Depression

Depression is a insidious disorder. Often you don’t know how bad it really is until something triggers such a reaction that you say “oh dear heavens, I want to die”. Depression and thoughts of death go hand in hand. Not always, but chances are if you’re thinking of your own death, you’ve been suffering from depression. That’s my experience anyway.

Insidious because often it’s just a cascade of things dragging you down until the feeling of drowning is overwhelming. Maybe it is your job, money, family, friends, school, health or something else that drops you down into the Blue Meanies. I’ve always called my depression the Blue Meanies, probably because of my love for Yellow Submarine by the Beatles. In the movie, the Blue Meanies are trying to destroy all music and color in their world, turning it grey, dull and hopeless. I have that feeling quite a lot, ergo the Blue Meanies have invaded my spirit. I often don’t see them coming until they have a pretty strong hold over my spirit and I’ve become quiet, less animated, more prone to dark thoughts. (see https://www.musicmusingsandsuch.com/musicmusingsandsuch/2018/7/17/feature-blue-meanies-and-the-liberation-of-pepperland-celebrating-fifty-years-of-yellow-submarine)

Dark thoughts can take many forms. These are some of mine.
* Feelings of unworthiness
* The world would be better without me
* My health means I can’t work, so what do I contribute to the world?
* Who would notice if I just wasn’t here?
* I’m a burden to all around me, financially, emotionally and sometimes physically.

I write these down so people can see MY thoughts. While I think of death regularly as a friend I would welcome in, I do not have suicidal thoughts. If you do, please call 988 in the US for help. Trained crisis workers will help figure out how best to help you. Suicidal thoughts are not bad, not abnormal. They’re honest feelings that have to be allowed space to live. All feelings deserve to exist, but for some reason, feelings of death, self harm and hurting oneself is considered taboo to talk about. I’m not the person to talk about any of those, as I’ve never felt any of them in a way to truly talk about it well. But I can remind people that any and all feelings are valid.

Some of my depression is caused from my genetic disorder. Knowing you live with something that makes every day a challenge is hard. Many days I force myself to shower, because it’s the only thing I can do that day. I don’t cook anymore, I bake very rarely, but I do clean up after meals. Headaches that are so bad that focusing on anything is close to impossible, but what do you do all day if you can’t read, crochet, type etc? You choose sleep, but I can’t spend my entire life in my bedroom. Believe me, I’ve tried. So I get up, take that shower, eat, read a book on my iPad (easier to hold and I can make the font bigger), crochet, watch TV (I try not to do this until late in the day) and talk endlessly to doctors and their staff about symptoms or next steps.

Add in being a highly sensitive person, for whom the slightest raised voice or unkind word is like a wound, and you have a person who doesn’t feel like they fit in anywhere. And when someone feels like that, then depression is close by and the Blue Meanies are smothering the world to you. Fitting in isn’t exactly easy all the time. I struggle with where my place is, who AM I without being able to work. I have no children and no partner to be responsible for. Sometimes I feel “less” because I don’t have those typical things being very close to 50. And I’ll never have children, which I don’t necessarily regret, but I also wonder what I’ve missed because of it. How much did my depression play into my choices not to get married or have children? Quite a lot. I never felt that I was “good enough” for the men in my life. Or I thought that I was enough, but they weren’t. Being a HSP, I’m very good at reading people’s facial expressions, body language, etc. Which means I sometimes can feel what someone wants from me without them telling me. And that sometimes means that I’ll change myself to fit what that person wants or I think they want. It’s a conundrum, and it’s part of who I am, to try to fit what I think people want from me. And it’s a hard thing to recognize that is one of my personality traits, as I refuse to call it a flaw. It’s who I am, and I have to recognize it. I was watching Ted Lasso for the 3rd time and I thought of how Ted and Rebecca use a codeword of “Oklahoma” to say if something is true or not. To talk about their honest feelings, which is hard to do. Fo many people, I wear that mask of “it’s all ok” and very few people see the Oklahoma version, the true feelings and emotions I have. For most people, I wear a heavy mask, as if to say “I’m ok, really I am” when the truth is hard to admit because how many people actually want to hear that your day, week, month or year has been shitty and death could be preferable? VERY few people want to hear that. I don’t know how many people truly want to hear it. Even if they say it, very few actually want to know it. Because in my experience, telling the truth on how you feel only sounds like complaining and I don’t want to be someone who only complains. I would rather people think of me as someone who fights through things and rarely complains, but also rarely goes out because of pain. But that’s part of me. And I’d rather be quiet and respected for being “strong” than have people say that I only complain.

This is essentially what depression means to me. It’s hard, lonely and quiet. But as long as I talk to the Blue Meanies and welcome them and don’t pretend they aren’t there, then I can accept them and live with them and work on how to work through them. I accept them and will always have these feelings, as long as I live. I just need to know they’re there and try not to let them take over. As long as I don’t let them take over, then I can live on.

Whether ’tis nobler in the mind to suffer
The slings and arrows of outrageous fortune,
Or to take arms against a sea of troubles
And by opposing end them. To die—to sleep,
No more; and by a sleep to say we end
The heart-ache and the thousand natural shocks
That flesh is heir to: ’tis a consummation
Devoutly to be wish’d. To die, to sleep;
To sleep, perchance to dream—ay, there’s the rub:
For in that sleep of death what dreams may come,
When we have shuffled off this mortal coil,
Must give us pause—there’s the respect
That makes calamity of so long life.
For who would bear the whips and scorns of time,
Th’oppressor’s wrong, the proud man’s contumely,
The pangs of dispriz’d love, the law’s delay,
The insolence of office, and the spurns
That patient merit of th’unworthy takes,
When he himself might his quietus make
With a bare bodkin? Who would fardels bear,
To grunt and sweat under a weary life,
But that the dread of something after death,
The undiscovere’d country, from whose bourn
No traveller returns, puzzles the will,
And makes us rather bear those ills we have
Than fly to others that we know not of?
Thus conscience doth make cowards of us all,
And thus the native hue of resolution
Is sicklied o’er with the pale cast of thought,
And enterprises of great pith and moment
With this regard their currents turn awry
And lose the name of action.

Hamlet, spoken by Hamlet

While Hamlet is speaking of a more permanent death, what I’m going to write on today is a smaller kind of death that is related to that of significant change that is not always something we choose to take on. The tiny deaths that happen every time a new part of us gives out and forces us to adapt our way of life.

For me, I’ve recently been facing this with my ability to create art. While I write in my spare time, I live for my art. It’s partly how I manage having EDS and its various complications. It’s how I grieve. It’s how I process some of my psychological trauma. It’s how I distract myself when pain is constant. It’s how I show love. It’s how I survive. I do so many different types of art that I can’t keep track anymore.

And now, EDS threatens again to take it from me. I faced this before just a few years ago. The connective tissue in my hands have always been extremely hypermobile, but my left hand had suddenly developed exceptional pain in my thumb. I couldn’t knead clay. I couldn’t bead. I couldn’t even wash my hair efficiently. Thankfully, I had just started seeing a rheumatologist that was a bulldog against my insurance and got me a full set of swan necks and a thumb plate for my MCP joint that started to fully dislocate with minimal effort.

I wrote a full other post about my ring splints to talk about it before, but it was done long after the period of adaptation. I was able to type without taking breaks to cry and scream how I hated the feeling. I had already started beading with regularity at that point, rather than throwing a piece only a few rows in because I couldn’t get the needle to do what I wanted. I was writing almost with the elegance I expected of myself, not the chicken scratch that I fought to get out with the new splints. I did this intentionally because I wanted to show that it’s totally worth it! It was worth all the screaming and crying over the difficulties and discomfort.

But, now I’m facing it again. My right hand…..my dominant hand….has betrayed me. The MCP freely dislocates and is constantly in significant pain. My hand that holds the paintbrushes. The hand that writes. The hand that holds the carving tools. That hand is now unable to hold anything without shooting pain.

The hurdle at hand (mind the pun) is whether I want to put in the effort to adapt yet again. It may seem to the reader, that this is an obvious thing. If art is life, then of course I would choose to adapt! While, yes, I’ve ordered a thumb splint…I assure you that it was not an easy decision or a simple and pleasant experience to decide this. It’s the turmoil of facing such a thing that I wanted to shine a light on.

The first aspect of this is the gut punch that is yet another failure of the body caused by Ehlers-Danlos. I’m angry. I’m short tempered. I’m heartbroken. I’m grieving. Whether or not I adapt, there’s a grieving process that comes with the small death of yet another thing I’ve gotten comfortable with having in my life that will cause significant change no matter what I choose to do. It happens with everybody and every body. Most experience it with old age, but some of us experience it younger than we ever should for various reasons. This only adds to the rage and grief. Angry at people who get to experience a full life of enjoying things they love without such challenges. Angry at people that have their mobility and abilities cut short from their own obvious poor choices because it feels like they’re reckless as a toddler. Angry at people with acute and curable hurdles because they can go back to normal. All of this is a lot of anger to process. I’m grateful to my sister, and I’ll take a moment to push her books by saying you should look up Kahaula on Amazon, for all of her help during this time to keep me grounded as well as helping with a safe space to scream without judgement.

As the grieving is processing, there’s the decision of whether to adapt or to let go. To be, or not to be, if we go back to the quote I used above. Because each option carries with it emotional baggage. Neither is the right answer or the wrong answer. They just are. And this is something of a problem in the chronic illness community as well. The overwhelming battle between saying “you’re not your productivity” while pushing “but don’t give up on things you like to do” to anyone facing such a problem. It’s a bit hypocritical and I don’t think we acknowledge that quite enough.

It’s not as simple as forcing yourself to be cheerful and pushing onward. It’s evaluating your own mental health and deciding what’s best for you in the long run. Because sometimes, giving up something you love, is actually healthier than trying to force yourself into adaptations because you are pressured into not giving up. Only you can make that decision for yourself, and that’s important. This is also a great point to mention that a therapist can be an important sounding board for such things.

For example, with my art, I know the new splint isn’t going to be comfortable, no matter how skilled the splint maker is and how perfect it fits. I know it took me several months to stop shaking my hands to stim from the discomfort last time. I know I’m going to absolutely hate the process of adapting because it’s learning skills all over again. It’s not a pretty process. It’s not like the inspirational video posts you see where someone disabled just tried hard, had a few frustrated moments, but pushed past it with joy and everyone was celebrating YAY! It’s trying.

The other side of this is knowing that it’s uncertain how long any adaptations I get used to will actually last. I **JUST** got back to painting my feathers even semi-regularly. Right after I fully adapt, I’ve got to go through the cycle **AGAIN**. It’s one more thing on top of the never ending accumulating mountain of things I’ve got to manage with this damned disorder and the constant malfunctions it causes.

It would be easier to just let it go. It would be less stress on me and my slowly falling apart hand. It would be less stress on those around me as I go through the emotional turmoil of the process to adapt. It would be more certain than trying only to possibly be let down as soon as I fine tune my adaptation. After all, I’m not my productivity. I’m not less if I come to the point that I can’t do my art. I’ll be sad, and I’ll grieve, and I’ll be angry…but I’ll eventually put my energy toward something else to keep my heart and soul occupied.

Is trying to keep doing art only speeding the decline of my hands? Am I creating a path to permanent disability that’s paved with dried paint and wood shavings? Could I extend the life of my hands by giving up most of my art? And could I live with myself if that’s what I chose to do?

There isn’t a right answer, only what’s right for me. Just as when you face your own hurdles, there’s only what’s right for you. I took a long time contemplating all the angles before deciding what was in my best interest. I can’t see surviving without my art at this stage in my life. As soon as I came to be aware of that, I made arrangements to order a splint to suit my failed MCP joint. And I’ll take all the rage and spite and fury and channel it into moving forward

I’ll cry and scream and probably throw a few innocent paint brushes. I’ll judge myself much too harshly for not adapting faster and producing the quality I expect from myself. I’ll get angry at the loved ones that remind me to be kind to myself on this journey. I’ll curse the gods and the body I’m in. I’ll do this all in spite of how much I’ll try not to. I’ll mask the myriad of emotions like the ocean hides Her rip currents until the wave becomes too much and crashes over. And I will do all of this not because I want to be an inspiration for everyone to push through and adapt no matter what. I will do this for one reason, and one reason only.

Because it’s what I’ve decided was important to ME.

Not to family that wants to see me continue. Not to people who want to commission me. Not to doctors that have their opinions on both sides. Not to people I work with that think I can adapt to almost anything. Not to my partners that both know what being able to create means to me. Not for other people to utilize for their own motivational needs.

For me.

That is what I want you to get out of this. Adapting is fucking difficult. It’s not a Hallmark movie with one sad day and a perpetual cheer squad. It’s horrible and I refuse to sugar coat it. It has potential for amazing things and I know that I’ll also cry tears of joy when I’m able to paint to my own standards again. I know the pieces I create out of all that anger and spite will be incredibly emotional statements that I can look back on. For now, it’s worth all of the struggles I’ll face in order to get there. While that makes it easier…it doesn’t make it EASY…and that is a significant differentiation.

It also brings me a great comfort that when I choose to let my artistic side rest for good, that it will be on my own terms and my own choice. I’ll know that I tried, and I know that I did everything I possibly could to extend the ability of my hands by doing things like wearing protective gear and mobility splints. So when that time does come? I don’t think I’ll ever be ready, but I’ll know it’s time. I won’t be a failure because I’m not somehow pushing through to find a way, just like I wouldn’t be failing if that was my choice right now. I’ll have the same comfort then, as I do now.

That the choice I made was mine, and for me alone.

I wish all of you the strength to make all of those hard choices that EDS, or any other hurdle, forces you to face for you, and you alone. Wishing it won’t hurt is futile, so instead, I’ll just wish you find peace in it and live your best life.

Over the years, I have done a lot of work with the trauma I’ve faced. One of the things that I’ve come to rely on is my memory. Now, I’m aware that every human has a flawed memory. But I had the skill of recalling conversations down to body language, tone of voice, and expression. It was a survival technique my brain picked up along the way as gaslighting was something I grew up with. It was also one of the challenges I’ve had, when there were memories I didn’t want to have on instant replay. Whether it was a positive or negative…I still relied on it. It was a point of pride, sometimes even dark humor as well. I still remember events from childhood as if they happened last year. I also knew that the time with one of my ex’s was a time I tried not to remember. I actively pushed those memories down. I was still aware of them, though. I touched on some of it when I wrote THIS ARTICLE here.

Recently though…I was brought to the sudden realization that there were a whole vault of memories I had subconsciously repressed about that specific time. I had literally had them so tightly locked away that I had no awareness that they were even there in the first place. The funny thing, at least to me, is that it wasn’t trauma that caused them to resurface. It was a string of good things.

I met a new artist friend that did an incredible piece for me. I love it so much, that I already planning a few more pieces and will showcase them in a different article that isn’t tainted by the rest of the subject matter. It is a risqué rendering that features some of the hidden aspects of having Ehlers-Danlos. I had to have someone take photos of my body in order to get this, and it was a bit of a challenge on facing down body images. But let me tell you, this guy was utterly fantastic through the whole process. Encouraging, funny, kind, and supportive of the whole project. It took all the anxiety I had and washed it away. In the end, I got a spectacular work that is proudly hanging in my living room.

Relationships are also great! One of my partners has decided to get a bit more experimental and it’s been fantastic! Even the recent commission plays into that as it helped me get more comfortable with my body the way it is. So he’s been thoroughly enjoying the new turn! The other half is getting a new job and we’ve been cuddling and going for walks. And…I guess this is where I realize that I’ve come out as polyamorous. Because for me, it’s important to the rest of how this plays out so no turning back now. Might as well add that I’m a bi demisexual that is Two-Spirit while I’m at it. There. It’s all out there now. Because I’ve lost the fucks to give on it.

So everything was fine. Everything was great. I’m working on new projects, making new friends, networking with new friends……..and then….

I knew I was stressed for reasons I couldn’t put my finger on. I chalked it up to all the normal stuff. Weather. Pain. You know…normal EDS bullshit. Until the very last straw. My one partner decided he wanted to give oral. We’ve had discussions on how I’m just not comfortable with it, but it was never for a reason. It just…was. I always just kind of disassociated during and felt weird after. But he was SO sweet about everything. And SO cute. It was never set as a hard no, only a soft no, so when he was being coy saying he “wanted to play, but his hands were cold…but he could use something else” I got swept up in the moment. Until I didn’t. It was the strangest feeling of wanting to be there and wanting to run and mentally lock myself down at the same time. Even after, I just felt distressed and uneasy.

It wasn’t until the next day that everything came forward. I remember the ex being sexually abusive and mentally abusive. But somehow…my brain had taken a large collection of some of the worst experiences and hidden them from my conscious mind. I knew it happened. I know of people that have missing memories. My other half has missing memories. I just…didn’t think I went through anything worth it happening to me. I thought what I remembered was bad enough that I would obviously recall the rest of it.

Things came slowly at first. It wasn’t like the world was ripped away from me. It was a brief memory flash that was completely unfamiliar. So I mentally dove after it because I was confused. The deeper I went, the more came flowing towards me. I felt like Pandora opening her box, but instead of everything escaping…I was being pulled in.

The details of what I remembered are not something I will be sharing. It should suffice to say that what he did…was turn sex into an unpredictable and violent act. And it was a number of years before I was able to get free. What I will say, was that it was the positive interactions that I had. It was talking about my own photos and it being a fully positive experience. That during something my body remembered as traumatic, I was relaxed and unafraid and with someone that I know is safe. They were such a complete contrast to everything that came up, it’s the only thing I’ve been able to come up with as to why that was the trigger.

The flood of emotions that I experienced during this…I can’t even properly explain. It was being lost in the middle of a hurricane at the worst of the winds and the waves. I felt betrayed by my own mind. I felt like I had gone leaps and bounds backwards in all my healing because of things I had forgotten. I felt like I couldn’t trust my memory. I felt sick and disgusted. I felt the violation all over again. And before I got lost…I called my zebra sister. She worked with victims before and I knew she was a safe place. My partners…all I could feel was that I had lied to them or betrayed them by not remembering. I felt too dirty and tainted to talk to them. That it wasn’t fair. That I wanted to enjoy things with them. That they shouldn’t have to make accommodations for things I didn’t even remember. That it wasn’t fair to feel the way I do towards people that love me so much. So I called her.

I will repeat the important parts for anyone else that needs to hear them. And I plead, that if you ever face such things yourself, that you remember this. No. It’s not fair. This trauma turned sex into a violent act for my body. It’s not my fault. It’s not their fault. It is the fault of the one that caused the trauma. It isn’t my fault for not remembering. I am not weak for not remembering. I am not flawed for not remembering. I am not broken for not remembering. My brain did exactly what it was supposed to do, and it did such a good job, I didn’t even know it did it.

It kept me going.

20 years away from when I first met that monster…and my personality is completely different. I no longer am the young lady who believed that if anyone showed her attention, it was simply to get sex because she was otherwise worthless. I no longer am the timid thing trying to make everyone happy. I am no longer the person trying to be so small she hopefully goes unnoticed and left alone. I am no longer hiding behind walls of reinforced mental concrete.

Hiding the horrors of what happened…allowed me to get this far. I share raw stories so that others may not feel so alone. I have a rich life of friends from all over the world. I pushed myself to get over debilitating phobias. I express myself with my artwork and am not afraid to challenge when necessary. I’m actually quite proud of how far I’ve come.

That it is coming up now, because I’ve become the kind of person that CAN handle it. That my subconscious felt safe and confident enough that it drug the festering bag of rot so I can get rid of it. That is how I’ve taken to processing it. I got past so much, and now I’m at the point where I can get into the heavy stuff that would have broken me if I looked at it before.

I did manage to talk to both of my people about what I was going through. Why I had been upset and tweaky. Why I didn’t want to be touched. The initial feeling was that all of that progress was lost. I was reminded by my other half, that I was already pretty messed up when he met me. I was doing the best that I could do just to survive what I DID have on my plate. And there was a few times in those early years of meeting him that my body did try to go into an early exit. Nothing intentional on my part, it just…was not okay. Looking back, my body remembered what my mind hid from me. Every time I disassociated during sex, was because it remembered and was doing a kindness in its own way. My partner took the other route and reminded me that I’m still the beautiful woman that he has loved this whole time. For him, nothing has changed when he looks at me. They both hate what I’ve gone through, and I got plenty of love and support. But for them, they never had a glimmer of disgust towards me or hesitation to hold me. Rage at the ex….but nothing but love and support towards me.

All of this just reinforced that it really was time to get rid of the rancid aspects of what had been carried with me this whole time.

So I took a full two days, and let the memories come as they would. I let them go. I screamed, and cried, and wailed, and threw things, and slept, and did the same thing the next day. I faced all of them. Every horrific memory that swept through my mind. I faced every last one. I didn’t go looking for more, but I faced what came up.

And the strangest thing happened…

I realized that I wasn’t feeling scared of my ex. I was livid. I wasn’t angry and upset with myself for going through it or not escaping sooner. I was raging at him. I wasn’t disappointed in myself. I was full of disgust for those that instilled those feelings of worthlessness of the self before I met him. In those moments, I realized just how much truth the words of my zebra sister and my partners rang true. That I was a completely different person that who I was 20 years ago. That as terrible as this experience was, and horrible as those memories were to face…it was the fact that I could face them. They still hurt and they still were something I’d not volunteer to go through again by any stretch. But I could. And my brain, as much as we argue, somehow knew it was the right time.

I don’t know if there’s any others back there. I don’t want to go looking. This is one time, where I can say that I trust my subconscious to know when it’s time to let me know if there’s anything else. But as I’m writing this, I’m no longer overwhelmed with emotions. I’m not breaking into uncontrolled sobs just because someone texted me if I’m okay because they’ve not heard back from me in a few hours and that’s unusual. I’ve been back to work and getting back to all my classwork that I missed during this little meltdown.

I’m grateful that I had all of these positive things that came together, even if it triggered something unpleasant. I’m even more appreciative that I’ve gotten to be the person that is able to see all the fantastic things I’ve got going on and celebrate despite the negative. Even though there’s more to go…repressing the memories wasn’t something that was bad to do. It wasn’t a fault or a flaw. It was actually something pretty impressive. So I’m even grateful for my brain’s ability to do that.

So if you end up with memories that come back. Or you have holes in your past. Take a moment to thank your brain for looking out for you. You don’t have to like it or being excited about it. But just try to be grateful that you’ve got such a cool survival mechanism. Call a trusted love one, call a trauma therapist, call whoever you need to be safe, absolutely and always. But you got this far and I’m proud of you!

And just for one final…something that gave all that emotional energy a place to channel…this is one of the songs I used. Hope you enjoy it as much as I needed it

Someone I care about shared a quote. My knee-jerk reaction to this was to think that it’s absolutely beautiful and brought me quite a bit of joy. The quote was from the book Beautiful Lies, by Lisa Unger and said, “When you start to know someone, all their physical characteristics start to disappear. You begin to dwell in their energy, recognize the scent of their skin. You see only the essence of the person, not the shell. That’s why you can’t fall in love with beauty. You can lust after it, be infatuated by it, want to own it. You can love it with your eyes and your body but not your heart. And that’s why when you really connect with a person’s inner self, any physical imperfections disappear, become irrelevant.”

And still…I find this to be a beautiful statement. It’s something that a partner of mine discussed on multiple occasions, the most significant of which was when I was first facing ankle surgery and the diagnosis of Ehlers-Danlos was becoming horrifyingly inescapable. I was scared. Scared that I would be a burden to those I loved. That all they would see is my inability to do things with them. My hurdles. My splints. My crutches. My pain. That’s all I would become, a reminder of ugly things in life and they’d stop wanting to be around me because of it. He was very gentle as he spoke to me and asked me to elaborate. He listened patiently. Though my sobs and my long-winded rambling. Then, with a smirk, he nodded and said, “Ah. I see. So, what you’re saying, is that if I fall off a roof and get hurt that you’ll stop loving me?” I was appalled that he would say such a thing and told him so! He then put on a very confused expression and pointed out that was exactly what I expected everyone else to do, “Are you saying your better than me?”, and the smirk returned. The conversation took turn and we discussed that I need to maybe accept that I’m loved in the same way I love others. That’s it’s more than looks, or what they can do for me. It’s who they are as a whole.

So when a friend posted this quote to her social media…those memories came up and filled me with a love that is all encompassing and rooted deep in the soul. A reminder that what love means, isn’t your productivity or whether or not you’re sick. You intelligence and your skill doesn’t make you less or more worthy of love. Nor does having a degenerative disease make you less deserving of love. Because being human and sharing love is MUCH bigger than any of that.

But then…the thoughts took a turn…

I’ve written about difficult times growing up. How I put myself in therapy and had to digest the fact that I had treatment for cPTSD and not just depression. But all the acknowledgement and processing for all those years, and sometimes it still pops up out of nowhere. Memories strong enough that I can still see the whole scene play out and hear it play in my head word for word. Having your mother tell you that your bra size was too big, which means you were fat and needed to watch what you eat…I was still in Jr. High and wasn’t even over 100lbs. I just have a big chest. Or having her pinch your belly skin when she walks by and reminding you that if you were fit, she wouldn’t be able to do that. Nitpicking about how my hair was cut. What clothes I liked. How I sat. It was all superficial nonsense.

Which, some of this can be normal. Parents are supposed to help teach their kids how to be functional adults. So no, your parents telling you that you’re not going to a family holiday dinner dressed like you’re going to a GWAR concert isn’t them being abusive. But it’s also supposed to come with praise and acknowledgement of good things. An encouragement of passions. If all they do is nitpick on your outward appearance and superficial traits while ignoring all of the beautiful, unique, and incredibly important traits about you that make you the fantastic person that you are? This is probably something you need to tear apart and inspect a bit. Parents are human too, and sometimes personalities just clash. But sometimes, unfortunately, they’re just not capable of providing actual love. Maybe they’re hurting, maybe they need therapy, maybe they’re just mentally unstable. What matters there is you take a healthy look at whether they’ve been supportive and maybe it just looks different than you’d prefer…or…whether they’re honestly not and you need to reach out to get yourself the help and support that you deserve. No matter how old you are or whether you parents are even alive or not.

The quote then hurt. It was a reminder of people that were supposed to be showing me that love as a child and what I didn’t get behind closed doors. Feelings of jealousy for people who grew up in families that loved their kiddos. People with kids who share how proud they are of them and you can tell by the interaction that they mean it honestly, and not just something they are sharing to get praise for what a good parent they must be.

Then…the thoughts got darker

Because the quote can also be used as a tool of manipulation. This is even more common if you grew up without experiencing an environment to grow up with in which you experienced love. If you don’t know what real love looks like? It’s awfully hard to recognize it from toxic relationships.

Every relationship has hard times. No matter how much love is involved, everyone gets stressed. Everyone has a breaking point. Everyone has a line in the sand. And everyone is entitled to their limits and taking steps to ensure their own mental and physical health. But abusive situations often contain a lot of guilt trips and passive aggressive statements surrounding the idea behind this quote.

If you REALLY loved me, you’d understand. If you REALLY loved me, you’d give me another chance. If you REALLY loved me……

I lived in a relationship like that for too long.

Yes, love means that you absolutely love the person despite their physical state, despite their mental illness, despite their trauma, despite their hurdles. Because the person is so much bigger and so much more than that alone. HOWEVER!!! Love doesn’t mean that you have to put up with being abused because they’re not putting in the work with their own issues to not hurt you. You can love them, and still walk away because you are important enough to not be a verbal or literal punching bag. Love isn’t being expected to fix their problems by constantly modifying your behavior so they don’t have to. Love isn’t being expected to constantly allow your boundaries to be crossed and disrespected.

Have open and honest discussions about any problems. Walk away when you feel you want to scream at each other. Find compromises when you can and work together on other options when you can’t. But do not bully the other person for having boundaries and do not allow yourself to be made to feel less human because you are sticking to yours.

I’m keenly aware that this is a difficult subject amongst the zebras. There’s so many in the discussion groups that I see where their partners up and leave because it just got too much for them. I’m not in their relationships, so I’m in no spot to even speculate on what happened or if there were other things that could have been done. I empathize with them because that’s an incredible pain, even if it happens to be mutual. I illustrated that fear in the very beginning of this post.

And I wanted to be angry about the quote. To make corrections and say that’s not always the case and how that can be a bad thing too. To warn people not to post things like that.

And the more positive turn that I promised…

Despite all of this, and some of the darker more intimate aspects of this thought process that I refrained from the elaboration of…I came back to that initial feeling I had about this whole quote.

I sat with all of these thoughts for a few days. I let all of the memories pass through, gave them their space, and “talked” to them. At risk of sounding like I’m anthropomorphizing them, the two sides kind of argued in my head. One was screaming that the post was dangerous and full of misinformation, while the other just kind of sat and softly smiled…with love. Simply existed, full of the love I’ve experienced thus far.

One of the things my therapist and I have worked on over our time together, was that if you didn’t have the love growing up? Give it to yourself. Be that source of love for yourself. Get help if you are incapable of doing that, because all of you are worthy of feeling that love. Doesn’t matter if you’re healthy or a zebra that’s a constant medical train wreck.

You are worthy of love.

You deserve love.

You can experience love.

Love doesn’t have to be happiness all the time. It doesn’t mean there will never be arguments. It doesn’t mean there will never be pain. It doesn’t mean hurt will be less in bad times. It doesn’t mean personal limits are negligible. But it means that you’re seen and appreciated for all that you are. That you can have the more painful discussions cushioned in that love you have for each other.

I didn’t have the “bad feeling” reaction to the quote because there’s actually something wrong with it. I had that reaction because the trauma part of my brain was trying to give me a warning to protect me. To remind me not to trust blindly just because *I* feel love towards someone. To remember that love is much bigger and much more significant than people who abuse the concept for their own purposes. To remember not to bleed my trauma over beautiful things, and instead sit and “talk” with it and divide the trauma response from the reality of the situation.

It’s also served as a personal reminder to how far I’ve come over the years. To remember that trauma isn’t ever fully gone, and that’s okay. It’s not a personal failing when it comes back, it’s an opportunity to reevaluate your beliefs and adjust or take action if necessary. To appreciate the love that I have in my life. And be grateful for the reminder that for as bad as things were…it’s learning to give that love to myself that opened up the ability to accept it from others. Though it can still be touch and go sometimes because brain chemicals are a pain in the ass, and it certainly doesn’t fix everything, it makes the world so much better to live in. Give the love you need to yourself, and it makes it easier to express it in healthy ways to others.

Because real life and human nature will always have boundaries. But love? Love doesn’t see the little things. It sees the most important things about ourselves and embraces the light that our soul creates. And feeling that, even if it’s just from yourself, is worth facing every hardship and every hurdle.

I wish all the love to each and every one of you.

It’s very frustrating when there’s no easily discernable reason. We both acknowledged there’s a reason, because there’s always a reason. Just maybe, ones that weren’t quite understood or we didn’t have the technology to understand yet. But that didn’t change the fact that we just wanted to know the reason because that would mean we’d have something we could act on. We laughed about how it’s probably the most absurd reason that nobody ever realized. And I said…..

…Like A Purple Cow

Where is the purple cow? Doesn’t matter, it just exists.

Why is it a purple cow? No reason other than just because.

Have you seen the purple cow? No, but I know it’s there.

Why is it the fault of the purple cow? Reasons.

What does the purple cow want? Nobody really understands.

Sometimes, the cow was angry. What was it angry at? We weren’t quite sure, but we said it was when it caused pain. So when there’s stomach pain, joint pain, nerve pain, and all without an easily diagnosable reason?

It was because we were dealing with a very angry cow that was stomping around for no good reason.

Sometimes, the cow was hiding in plain sight. When you have something that seems like it’s an obvious issue with an obvious treatment. I once had a massive flare of what looked like poison ivy. Didn’t itch a whole lot, but that’s exactly what it looked like and it made sense. Took a steroid shot, and it got worse. Was given a high dosage steroid gel, and it got worse. Went to a dermatologist that shrugged it off at poison ivy and was convinced I was lying about the steroids because poison ivy would go away with steroids.

We never did figure it out, though we’ve assumed it to be MCAS related. But it was something that should have been very “normal” and “easy to treat”. Yet….it tormented me for over a month.

Purple cow

Sometimes the cow is a sneaky little thing. You’re having a good day. You’re getting things done. Enjoying life. Hanging out with friends. Working. Whatever you happen to be doing. When all of a sudden….

….without warning…

BAM! Debilitating symptoms! Whether it be a migraine or a joint going out of place. Gastroparesis causing you to vomit. Whatever the reason, it snuck up out of nowhere for seemingly no reason.

Purple cow

A symptom that you’ve dealt with forever and thought was completely normal only to find out that it’s actually a sign of having a rare disease?

Purple cow that’s been painting itself to look like a zebra this whole time.

I wrote a post a while back that included using lizard pictures sent to friends to describe the state of my mental health. Godzilla was the “I’m in immediate danger and am in legitimate danger” signal. Sometimes there was a trigger I can pick out. Other times?

That damned purple cow showed up in a Godzilla suit.

Having an over-active immune system that thinks it’s helping, but is really causing you significant issues? MCAS rejecting food that’s good for you? Lungs full of fluid because it’s trying to encapsulate the invaders? Nerves in pain because they’re trying to let you know there’s something wrong but won’t stop screaming?

It’s a cow trying really hard to be helpful, in all the wrong ways.

I even designed a cow for when people try and tell you that it’s spiritual reasons that you’re feeling poorly. I generally degrade it into “woo nonsense” when it’s unhelpful suggestions and tangents. But it can be things like having terrible dreams for no apparent reason?

Maybe it’s your meds, maybe it’s a cow in disguise as something magical.

But whatever is going on…..

Whether you’ve got a random flare of shingles or mono. You get the bad news of a diagnosis. You have strange complications that confuse your doctors.

It’s so easy for us to worry. Maybe I screwed up. Maybe I’m being divinely punished. Maybe I deserve it. Maybe I had it coming. *Maybe my doctor is bad. Maybe I didn’t try hard enough. Maybe I’m being a drama queen about it. Maybe I’m just making it up. Maybe I’m just weak.

Or maybe…just maybe…life is chaos and there’s not always a nice and neat answer for everything.

Maybe….

It’s just a purple cow.

IF you like these designs, you can find them on the RedBubble site through the art page of RedTailArts there.

*If you ever think that your doctor is the problem or you’re not being heard, please get a second opinion! You should always feel heard by your physician and we know that it can be a difficult thing to figure out whether it is a doctor or a body problem.

As with a post I’ve done previously, I probably don’t have it in me to edit for eloquence as much as I would prefer. Do not consider my statements legal or medical recommendations of action for your particular situation. Anything I talk about, is my own experience and I urge you to do what you feel necessary to stay safe and healthy.

One last note before we begin, while the #MeToo movement was generally centered around women that told their stories, I want to stress that sexual assault does not have a preference as to who will be a predator or a victim. Absolutely nobody is, by default, incapable of being in either category simply by being a particular gender, sexual orientation, or life circumstance. A straight cis man can be a victim, despite that the majority of predators fall into that category. A lesbian AMAB woman can be a predator, despite that they’re more likely to be victims. There is a dangerous undercurrent in many group conversations that has been suggesting that certain groups of people should ALWAYS be believed over another. I want to make it very clear that I don’t feel there is, nor should be, any group of person that should be considered protected above others…despite that it may not be a very popular opinion on things.

I’m aware this is not a comfortable statement. But we must not face trauma with our own fears of not being believed. Predators come in all genders, in all sexual orientations, and all levels of physical ability, ect… There’s even victims that instead of healing their own trauma, turn into predators themselves. If your situation doesn’t fit the typical “strong cis male forces himself on weaker unsuspecting female” story that we’ve come accustomed to…this had no impact on the validity of your experience.

After a lot of work, both with people that love me and a therapist that has an amazing skill with trauma, I came to truly accept some things. These are things that I would have told, and HAVE told friends that have been victims. But…when it happens to you, it’s harder to believe it yourself. I’m sure I’ll repeat it later here and that’s only because I want to be very upfront; none of it was easy, but all of it was worth it. Having ones that I trust remind me of these things, gave me permission to believe it too. Dear reader, you may, or may not, know me, but sometimes a stranger’s permission to accept can be a great help. So…for anyone that needs to hear it….

It is not your fault.

There’s a lot of blame that happens in our culture when a victim comes forward. I don’t care what you were wearing, or if you started it, or if they misunderstood something as a pass, or if you were drunk, or if you were drugged. It’s not your fault. The fault falls 100% to that of the person that assaulted you. Unless you were literally asking someone to do this to you as a BDSM scene and you negotiated a safe word (which is a completely different circumstance) then it’s not your fault. I understand it isn’t easy. I was on some high pain meds after a surgery, and yet I still wasted time trying to talk myself into ways that that I could have been responsible. Think about that for a moment. Drugged up person, less than 48 hours after significant surgery to my ankle, was trying to figure out how it could have been my fault. The person that needed someone to give them meds and was so discombobulated they needed physical assistance in going to the bathroom. Was trying figure out how it could possibly be their fault.

Now that some time has passed, I understand why I tried to take that approach. It was someone I considered a friend. It was exceptionally difficult to think this individual would do this without a reasonable explanation, because friends don’t do things like that. It was easier to lie to myself about the truth of the situation by trying to take responsibility despite being drugged…than it was to accept that this person took full advantage of knowing I was greatly impaired on a medicine that would make memory incomplete.

This is something that is hard to accept for just about anyone. Not only do we have to come to the realization that the friendship was a lie as a whole, but it often creates feelings of suspicions on other topics. If one could make such a grave error in judgement in this situation, they may start to question if any of their friendships are real. And to come out of the darkness the situation brings, you’ve got to face those concerns (preferably with a good therapist as a neutral party rather than a friend that, by the nature of trauma, you may question the motives of later). It can slowly spiral into everything that’s beautiful and healthy. And I know that it can be painful and scary and terrifying, but you are worth the effort to give that gift to yourself. To be able to truly accept the reality of it not being your fault.

I certainly wasn’t excited about that particular part of the journey toward recovery, but, it’s also not a part of my nature to even entertain a lie to myself for very long. A terrible truth is more useful than a pleasant lie in my world. Facing temporary discomfort, no matter how intense, is better in the long term. Try and remember that on your journey as well. Whether your skirt was short, you got in the car, you asked them to help when vulnerable, you were drunk, you were too scared to say no. It. Isn’t. Your. Fault. If the person that assaulted you wasn’t a predator…would what you have done mattered as much?

It can happen to anyone

You are not weak or dumb or asking for it more than anyone else that it’s happened to. All you can do is protect yourself the best ways you know how. Just because sometimes it can still happen, it says more about the one that assaulted you than it does you. I know that, again, it’s not easy. We want to believe that there’s always a way to prevent it. That if we just do the right thing, that will keep us safe. It’s incredibly jarring to have to face that we ALL have times when we’re vulnerable. We can’t be hyper-vigilant 100% of the time and still lead normal lives. Or healthy ones for that matter. Though, our minds may try to tell us that this needs to be our new normal as it may become hyperfocused on trying to prevent this from ever occuring again.

This is a natural part of trauma for many people. Our brains try to take what happened and create a new set of rules in order to prevent it from ever happening again. So many people come up with tips and tricks like walking with keys between your fingers in a fist or a nail polish to dip in your bar drink to detect an added drug. But all the precautions in the world, doesn’t mean we’ll be perfectly safe. If military personnel can be sexually assaulted despite all their training and knowledge, then it can certainly happen to you too. While that can be fear inducing, try to use it to reflect back on how it’s not your fault. If it can happen to some of the best, then you are not less or flawed or broken or weak because it happened to you. As previously stated, it says more about the predator than it does about you.

Part of the reason I sought help for myself is because I know I couldn’t accept that truth on my own. But with another surgery coming up shortly after it happened, I couldn’t afford a scared and wounded heart going into it. I was not going to give myself the best chance of healing if I was still consumed by the trauma. Considering refusing pain meds so you stay fully aware, is not good for your healing. Considering trying to force your partner to stay conscious for 72 hours so you don’t have to even think about the chance it could happen with anyone, is not healthy. I refused to let it poison my chances of healing. Taking healthy precautions is great and knowing it could happen to anyone shouldn’t prevent you from doing so. But the take away here should be not to beat yourself up if the worst does occur.

It’s okay to feel however you feel about it

I know as much as we can understand things from a logical point of view, it doesn’t mean that emotions will be kind enough to follow suit. They’re going to do whatever they’re going to do. Anger, guilt, betrayal, fear, disgust, grief, hatred…no matter what feeling it is…it’s okay and normal. The important thing is to just acknowledge them, embrace them for what they are, and refrain from acting solely on just those emotions. Don’t focus on whether the emotions are okay to have. Sexual assault is a trauma, and as a dear friend reminded me, there’s no such thing as a minor sexual assault trauma, and trauma brings a mix of volatile emotions. So whatever your feeling is valid.

It is also valid to grieve the loss of what you thought was friendship (or whatever relationship it may have been) and still feel like you never want to see the person again. You can miss the person that assaulted you, the person you thought you knew. Just never allow them the chance to come back and do it again because of that feeling of loss. There is nothing wrong with you if you miss the relationship you thought was real. Those memories are valid. There’s nothing wrong with you if you don’t need to grieve right now too. You don’t have to have the same response as someone seeks to be valid. Contrary to what some will tell you, there’s no right or wrong way to feel after a trauma. The only right or wrong is action taken solely because of the emotions that come about.

Reach out to loved ones, but only for your sake, not for spite

Nobody should have to handle such a burden by themselves. So reach out to those that you trust and you know love you. Don’t do it because you just want to ruin the life of the one that assaulted you. Do it because you are a person that deserves love and support when dealing with a trauma.

When I reached out to the first few loved ones, it wasn’t to convince people to take sides or ask them to help me plot revenge. It certainly wasn’t a cry for attention so I could whinge about poor little me. My whole intention was that I refused to let someone not worth my attention have an impact on my life without taking healthy action about it. I was going to talk to those that I trusted the most to prove to myself that I could do it. Whatever the people I told did, was up to them. I owed it to myself to reach out, despite any fear of rejection.

Some of them were livid, some were full of sympathy, and some simply let me talk, but the important part is that I have been blessed so far that the vast majority have been full of love and support. And really…that was all I wanted at the time. A reminder that just because one person played a good game of pretending to be a decent human being, didn’t negate the fact that others were honest in their relationship. Prove that to yourself too. It isn’t about them, it is about you giving yourself the best chance at overcoming it in healthy ways. Confirm the bonds that you love and trust. Don’t let the trauma ooze onto the good things that you deserve to have in your life.

Predators will lie about what happened. It’s about them…not about you

As if the assault wasn’t enough, it’s not uncommon for someone that assaults you to lie to others about it in an attempt to invalidate your experience and your story. If they paint themselves as a victim, their hope is that the lie is believable enough for others to ignore your truth. Document everything as much as you can. Write down what you remembered happening as clear as you can. Screen shot texts. Think of any outside person that can disprove the lies being said. For my personal story, having someone else that was close by and the only one that administered my aforementioned pain meds with a surgeon that could speak to my state and past history with similar surgeries?

And though it may be tempting in the face of someone accusing you of something you know to be untrue…DO NOT LIE IN RETALIATION. Do not fabricate part of your story in an attempt to quiet the lies. Do not attack back in spite. Do not encourage, or allow without counter, others to lie about their involvement or awareness of your circumstances. There’s also a great benefit to living one’s life in the pursuit of truth. There’s no lies to uncover. No conspiracy to unravel. I know all too well how it feels when you hear lies about the event. Lies about who you are. But no matter how that feels…stick to truths.

No matter the reason they did it, no matter the reason they’re lying about the truth of reality. They are doing it because they don’t want others to know they screwed up. Their victim just happens to be the easiest whipping post because they’re typically scared and wounded from digesting what happened to them days, weeks, even months later. Not because the victim is weak, but because that is how trauma impacts the brain. I know it can be scary, facing a mess like that. But be honest to yourself, and don’t let the fact that they’re trying to get everyone’s who’s listening. Try to have faith that those worth your presence will not fall prey. And if they do? You’ve just outgrown them.

Never let your aggressor convince you that you need to talk one on one to work things out. Or that you poor thing, you’re so confused, if only you could have talked it out. Or that you’re the one throwing the friendship away. Or that you’re ruining their relationship with people. Or feel obligated to answer their questions. Hell…don’t feel obligated to even answer interrogatory questions from supposed loved ones if you aren’t okay with it right now. Don’t flay yourself in order to prove anything unless it is your choosing. Listen to those you trust if they’re worried about your well being as you heal during this time. But you owe your story to nobody.

Healing will take time and can show up in very unexpected ways

As I’m writing this particular section, it has been months since the incident. I went through two different rounds of some pretty heavy therapy. In my mind, I thought I had gotten over it and recovered because it wasn’t impacting my life………..that I noticed.

Unfortunately, part of the problem was I wasn’t noticing. I was blissfully unaware until very recently to be perfectly honest. Someone I have been quite close to for about 5 years now, asked if they could spend some time overnight with me. I was in a complete panic about it. You’d think that would be panic over Covid exposure? Nope. I don’t have any concerns there because he pretty much stays away from people too. No no. I was completely obsessed with things that were kinda nonsense. Want an idea? Take a took over at this previous post for an example of what my sentient ball of bacon jelly that calls itself a brain decides to go a bit crazy.

It took just venting to a trusted friend before I realized…the last time I fell asleep next to someone that wasn’t my primary partner…was the person that was supposed to be keeping me safe while recovering from surgery. Months later, my sentient bacon jelly still felt a need to keep me safe from anyone that wasn’t my primary partner. Despite the fact I’ve been close to this other person for five years and he’s one of the ones that helped me recover in the first place. Despite the fact that he’s seen me at some of my worst and still supports me in ways I don’t even always have words for. I was still experiencing remnants of trauma over the idea of falling asleep with them even close by.

But you know what? That’s okay. While it does bring up quite a bit of rage that I thought had completely cooled down towards my aggressor, I’m more furious at how trauma impacts things rather than upset over “Oh woe is me, poor me and my situation.” Because as soon as I realized it? It gave me the chance to work with it. I’ve spent the day messaging him about where my head is at, and it allowed a healthy conversation about how to move forward in safe ways.

Is it a shitty set of circumstances that lead to issues that can be intimidating to have conversations about? Yep. But having those conversations was the only way to face it. Refusing to let it get in between me and those I’ve gotten to share wonderful bonds with. Even though it was unexpected and months after the fact. Don’t let the trauma of the event dictate your life. You’re not failing if it comes back. You haven’t failed if you look back and realize that some of your new behaviors are trauma based. You haven’t failed if you have a flashback even years later. You’re only failing if you give in and stay there.

One of the most important things, is to get the professional help you need

Every location is different. Where I’m at, we have a FANTASTIC advocacy group that is very easy to talk to. Many areas have women’s shelters that will have a list of recommended therapists that handle sexual trauma specifically. There are also a number of lawyers that will provide a free consult to help you understand the proper measures to take in order to protect yourself and your rights as a victim. Some victims feel comfortable going to the police, while others do not. Though I encourage speaking up, I also have to acknowledge that everyone’s circumstances is different.

The first thing I did was I discussed my concerns with my surgeon during one of the post-op appointments to get an unbiased take on what the chances were it was a freak medication reaction. Making sure that there was no chance that my fragmented memory was, in fact, unprecedented hallucinations. When that was shot out of the water pretty concretely? I didn’t see any other option but to go to therapy. But that is my path and how I chose to walk down it.

You know your situation better than anyone else. Whether you quietly find a therapist or you go for the metaphorical throat of those that have wronged you. What matters above all else, is that you’re safe and taking steps to protect your own well being.

The faster one can take a trauma and process it in healthy ways, the faster we can also move on and live happy lives despite it. It has come up with several different therapists now. The longer you wait for help, the longer it will take to recover. It’s never too late, but if you get to it sooner, you remove more opportunities for it to ooze over more positive things in you life. So please…get professional help. Despite the stigma about it. Despite what those around you may think. Get help from someone trained in trauma specific therapy.

Because you are worth it.

You deserve to be happy.

You are not the trauma that happened to you.

And those that insist on using something out of your control to shame you or make you feel less worthy of having a life worth living…leave them behind with their choices. Because you deserve those that will support you in trying to make your life better.

I’m blessed to have a support network. And I’ve got a stubborn bitch of a personality. I may not always know the right thing to do or the best way to handle it. But I do know it’s always better to keep putting one foot in front of the other. Because I’m worth it. I’m worth all that effort and pain and fear and heartbreak it took to recover this far.

And if I’m worth it?

So are you, you magical fucking zebra, you.

If you need immediate help, the number for the national suicide hotline is 1-800-273-8255 and they have a chat option on their website at https://suicidepreventionlifeline.org/

Suicidal thoughts are a major taboo subject, but we can’t even come close to helping if we avoid productive or honest conversation on the matter. If we’re too afraid to talk about it and shine a light on it, we’re too afraid to give help that’s of consequence too. This will be much like a previous post, and while I feel it’s an important thing to write, I don’t have it in me to edit as much as I normally would. I hesitated a lot on whether I should be writing it at all. But with the birthday of a friend that made that choice today, several friends talking about the topic, I think maybe it’s just time to get it out there. As it says in my bio, I’m not a medical professional. This only comes from self-study of the subject and experience.

We’ve all got some idea of what goes on in the mind of someone who’s deeply depressed and suicidal, whether from experience or from assumptions, whether accurate or inaccurate. For the average person, suicidal thoughts are often thought of as largely a passionate experience. To be hopelessly overwhelmed all the time. It’s where we get some of the confusion when a suicide does occur and then we see photos or videos of the person shortly prior to the incident and they appear to be enjoying life. There’s this misconception that if someone is suicidal, they will give off constant warning signs when they’re in danger.

But suicidal thoughts aren’t loud all the time.

I’ll repeat it for those in the back, suicidal thoughts aren’t loud all the time. Sometimes they are loud and overwhelming, invading each conversation and daily task. The mind turning the smallest negative aspect into a travesty. “The toothpaste is out, you can’t even remember to buy everyday things. You’re worthless.” Or “You need help showering? You’re such a burden on everyone, they’re just too nice to say it.” When they’re in so much control of your thoughts, you start to make a plan of exit. It seems to be this version that people expect when talk of suicidal thoughts surfaces. The iconic image of an emo kid, someone so burdened by emotional hardship that it bleeds into what they wear, how the style their hair, their music, and anything else that’s pretty stereotypical.

But sometimes these thoughts are nothing but a whisper of a notion that quickly passes. A bad pain day turns into a bad week, you’re talking with your doctor about options, and the thought flits through your awareness as a half-sarcastic…. “Or death, death is an option”.

It’s not with anger or overwhelming emotion that this thought slithers through your brain, knocking everything else down in its wake. It flutters through with the grace of a butterfly and gently lands in your awareness and just sits there. Calmly. Patiently. Unintrusive. Oddly comforting. “There’s always death”

Is One Type More of a Risk Than The Other?

Let’s call the two types of suicidal thoughts I brought up active and passive. Active being the drive to commit the act, passive being just a thought that calmly passes through. While it’s often thought that active is the only real risk, both need to be given proper attention and taken very seriously.

With active, it is a current emergency. They (or you) need immediate attention and active intervention from friend and family and mental health professionals. This is kinda common sense. Whatever their current crisis is needs addressed and as soon as possible. Because of this, this flavor of suicidal thoughts are often thought of as the most dangerous because the individual is actively making a plan. Emotions are not listening to true logic. They’re understood as teetering on the edge and in desperate need of a safe space.

Passive, however, is a lurking monster that often doesn’t get the attention it needs because it plays a really good game. In general, passive can be a really effective coping skill…until it’s not. The hidden danger of passive is that it becomes simply a choice. The high emotion is taken out of it. If you feel that your other options have been tried and failed, the brain starts to see it as just a logical progression. I have seen this a lot in the chronic illness community because when life is painful all the time, it can be hard to always look on the positive side. This is especially true with something like Ehlers-Danlos where there is currently no cure…just waiting for your body to inevitably get worse. A time period of complications or sliding backwards can easily trigger the brain to go, “Yeah, maybe that last option is all we’ve got left”.

So when it comes down to, one isn’t safer than the other. One isn’t better or more healthy, or even less dangerous. Their peak risk just comes in different forms and in different circumstances. If you experience either, I urge you with all the love in my little zebra heart, please seek professional help. You are worthy of such help, and you are worth the effort of finding a therapist that is a good match for you. It won’t stop the physical pain of what you’re going through, but it can help the psychological aspects. It is possible to bleed this topic into that of medically assisted suicide for terminal cases…but I do not have it in me to breech that aspect at this time.

The Appearance of Suicidal Thoughts

How do these look on the outside though? Are there warning signs? Is there something you, as a family member or loved one, should be looking for?

Well, in my limited experience, yes and no. There are always signs that people notice after a person exits that they feel they should have picked up on. How much of that is actual signs and how much is people wanting to feel that there is an illusion of control in such a situation? I’m honestly not sure. Sometimes people pull away and start to isolate themselves. Sometimes they will go on a minor binge to make amends, help loved ones, and gift their prized possessions. Sometimes they start making a point to check off bucket list items. Sometimes they go out of their way to do good things. Sometimes there’s loads of morbid humor. Sometimes they go on an emotional downward spiral. Sometimes…there’s nothing.

The difficult thing is that some of these “signs” are also just signs of someone going through the normal ups and downs of life. That isn’t to brush them off by any means, more to cause pause before panic. Just because your sister gifted you something important to her, doesn’t mean she’s going to jump from the roof. But, it may be something that should be inviting conversation. When your best friend is making a morbid joke about their condition, they may not be at risk to themselves. However, it probably is at minimum their way of subtly letting you know that life has been chucking lemons at their face and the morbid humor is their way of shielding themselves from the worst of it.

There’s no reason to immediately panic and call for a wellness check from the police. But there’s plenty of reason to reach out and simply see if they need to talk. Just to listen. To be there. Never underestimate the power just being there can have for someone.

What About More Obvious Signs of Self Harm?

While most immediately think of cutting one’s self, there’s other types. Taking high risks, substance abuse, picking fights, and similar actions are all able to be thought of in the spectrum of self harm. Even going off of one’s medications rather than overdosing can be in this category.

I’m generally familiar with two main reasons for doing think kind of thing. The first is for self punishment. The pain is felt to be deserved, if nobody else is going to do it they feel a drive to do it to themselves. I’ve personally seen this more with risk taking types where they feel like they’re giving fate a chance to step in. Doing something like crossing a street without looking because they’re giving the universe a chance to “correct a mistake”.

The other reason is to induce pain. While I’ve often been told by therapists trying to explain the behavior to others as trying to mimic the pain that’s on the inside on the outside, my personal understanding of it is that it is more often to do with the physical sensation of pain. Forcing the body to feel something other than focusing on the internal torment. To make the mental anguish stop by derailing it with physical sensation. Ever see a TV show where they snap a rubber band on their wrist? It’s an attempt to glitch out that thought cycle in the brain. Self-injury is a more extreme case, but often along the same lines.

I’m sure there are other reasons, but as I stated, I am not a medical professional an this is the limit of my personal experience and knowledge of the subject. Do not consider than an exhaustive explanation.

If a loved one comes to you or you accidentally discover this behavior, please, for all the love you have for them, don’t freak out. Make sure they’re safe first and foremost. Is the wound bleeding? Was the instrument and the site sterilized? What do they need from you right now? Whatever immediate questions are relevant to their safety. I know the instinct of most is to lecture, but I’m telling you, they already know all of it. Their brain is so deep down the rabbit hole that it didn’t matter to them. What they need from you is just to help get them in an immediate safe spot.

If they’re in a safe spot, or if when you notice by accident and the wounds are already healed up, lecturing them is still not as good of an idea as you might think. Most know why they do it, and are ashamed of the fact they’ve felt they had to resort to that in the moment it occurred. They need support and love. It can be tough-enough love telling a loved one “No, don’t you mark up my beautiful friend anymore and I love you” to a more gentle “I really would prefer that you not do that but can you at least promise me that you are being as safe as you can be?” It sounds counter-intuitive, but I can’t stress enough that the individual is already going through a hard enough time that it drove them to these actions. A lecture, yelling, threatening hospital stays, it can easily encourage any negative self-belief that they’re a burden and loved ones would be better off without them. This is not something you can logic out with them at this point by aggressive tactics. This is due to mental illness. Please don’t assume that if you just force your point, that it will be understood.

What Is the Next Step?

Whether active or passive, suicidal thoughts are something to take care with. There is no one-size-fits-all solution. But whatever you do, approach it with your heart full of empathy, love, and compassion. Ask them what they need and what you can do. When I’ve had personal experience from one side or the other, there’s a few things that have worked from time to time.

• Set up a check-in time
  Everyone is different, but set up where there’s a check-in for them to contact or at least pick up the phone. Talk to them about a secondary act about what to do next, not as a threat, but more of a “If you don’t pick up, I’m going to think the worst and call ______ to go over and check in on you. Not because I’m mad, but because I love you and I care”
  
• Sometimes a code word or image helps
  Among my nearest and dearest, we’ve got a code. Reptiles. If I’m seriously not doing okay, I can’t always talk and express my words they way I need to. So I can text a picture. The severity of where I’m at is reflected in the danger level of the reptile. The worst days, times where I’m legitimately concerned for myself and where my brain is at…I send a picture of Godzilla. If I’m just not okay, but worry I’m being a burden, but still know I need someone to talk to, it might be a rattlesnake. As I’m having better days and improving, it’ll head to a cute gecko.
  
  It may seem like downplaying the significance, but it’s actually more about finding a way to communicate. Often, the darkest spots of that state of mind really do make it hard to ask for what you need. Whether the individual has pushed so hard to hide it they are overwhelmed with embarrassment at having to have to ask or their brain is telling them they don’t deserve the help in the first place. It gives a slightly indirect way of asking for help when it maters the most.
  
• Help them get comfortable talking with a professional
  Going to a psychiatrist or mental hospital has a TON of stigma still. I remember horror stories of people insisting if you went in, you’d never come back out again. Yes, there are bad doctors and bad facilities. I’m not going to pretend otherwise. But there are so many that are truly out there to help. You and/or your loved one struggling are worth going through the effort to find one that is a good fit. Avoiding professional help because of fear is like avoiding going to the ER when you’re vomiting blood. There are terrible ER experiences…but isn’t your life worth that? Because you’re obviously not okay on your own right now. If you’d go for vomiting blood, you should go when considering taking your own life. They’re the same level of severity of symptoms.
  
  Look up reviews online. Ask support groups in your area for a psychologist they had a productive experience with. Talk to the individual in need and ask what their fears are and how you can best help get them the assistance they need.
  
• Listen to them
  This may seem obvious, but don’t brush off their concerns. Listen to what they have to say. Engage them in conversation at their level. If they can just cry, let them cry. If they repeat the same thing over and over, acknowledge that you’ve heard it by discussing the topic.
  
• Let them know they’re loved
  This may seem like another obvious, but so many times I’ve seen where others are so consumed with panic that they forget to approach the individual with love and compassion.
  
• Be honest
  Tell them that you’re not sure what to do if you really have no idea. It’s okay. They don’t need someone blowing smoke at them, they need someone being honest. You can be honest AND be compassionate. There’s no shame in saying “I’m sorry, I really don’t know what to say, but I know that I love you and I’m sorry your hurting.” or “I’m not really sure what to do here, so if I do something that upsets you, please just let me know and know that I don’t mean to”
  
• Finding any reason to go on, even if it’s short term is helpful
  While I often hear to learn to live for youself, not everyone can do that in the moment they need it. So find whatever you can.
  
  Because your pets need fed tomorrow
  
  Because you promised your best friend you’d make them a craft they’ve been pining over
  
  Because you need to see your favorite band in concert at least once
  
  Because you made an appointment with your doctors and you keep your appointments
  
  Because you promised a friend you’d meet them for coffee next month
  
  Because you have tasks to do at work
  
  Whatever keeps you going for just one more day, and then one more, and then one more. It doesn’t negate the need to get professional help, but it can help you get to that point.

What Not to Do

• Don’t lecture
  I know I railed on it a bit earlier, but seriously…don’t do it.
  
  They don’t need to hear how others have it worse. Or how they’d cause pain to others left behind. Or how they’re being selfish. They know. Trust me.
  
  But suicidal thoughts are so overpowering that there’s a discolored logic to all of it. If you say you’ll leave pain behind, they think it’ll only be temporary compared to the pain they’re currently causing. Doesn’t matter that it’s generally not an accurate statement. This is what I call Depression Brain. It refuses logic.
  
• Don’t think you’re fully responsible for fixing it
  You are not their savior. You are not flawed for not being able to fix them. If you cannot pull someone out of a dark place, it is not because you’re not good enough. You can only help people as much as they’re willing to be helped.
  
  There is a reason therapists and psychiatrists exist. Utilize their existance.
  
• Don’t mock them or their pain
  This should be self explanatory, but I’ve seen where people honestly thought it was helpful. I’m still murky on that line of thinking to be honest. I suppose it could fall into the “don’t lecture” catagory, but it seems different enough I wanted to mention it all on its own.
  
• Don’t say things that you don’t truly believe just because you think it’ll make them feel better in the moment.
  
  If the individual asks if you can come over tomorrow, and you know you can’t, don’t lie and say yes because you think that’s what they want to hear. Don’t make promises you don’t intend on at least making honest efforts on keeping. You can’t make things better for them by intentionally lying if you’re trying to get them to see how things aren’t as bad as what they seem right now.
  
  Don’t tell them they can call anytime and if you’re going to yell when they call you at 2am because they’re scared. It’s okay to have limits and know you’re not able to give them what they need. Just don’t lie about it.

There’s No Shame In Needing Help

I know I’ve already stated that if you’re feeling these things, to please get help. But please please PLEASE know that there’s no shame in getting help. You haven’t failed. You’re not a lesser person. You’re not worthless. I don’t have to know you personally to know this either.

I’ll share something that stuck with me. It came from someone I’ve grown to be exceptionally close to over the past few years and it made a big difference when it came to those moments I needed to ask for help. For context, I was in the middle of a really deep depression. I was scheduled for my first major surgery, the surgeon had told me I was on my way to walking myself into a wheelchair (which was pretty much true and no blame falls to him), I had been in a walking boot for 9 months, and I was terrified that it was the beginning of the end. I was upset with myself at being upset and not being able to put the emotions back into their box. He came by unexpected and at the worst (at least at that moment, it was really the best thing that I just didn’t want) time. He let me cry to him about all of it, put up with my apologizing over it……and then decided to give his input…

“I’m confused though, why do you keep apologizing? If I understand what you’re saying, it’s that your brain sometimes gets a litle sick. So…what’s the difference if you get a cold and if your brain gets a cold? You think you’re somehow broken because your brain gets a cold or something? Isn’t that what you see some of your doctors for? You have one that talks to sick brains right? If you’d go for a broken arm, why don’t you call her for brain sneezes? Besides, your brain having a cold doesn’t make you less beautiful. Or less smart. Or less skilled. So stop apologizing, and let’s just get you feeling better.”

So I’ll pass that to you. What you’re feeling is just symptoms of your brain being a bit ill and needing help. It doens’t make you any less of a person in any way. Because he didn’t know me that well when he told me all that. Just like I don’t know most of you. But he meant it, and you know what…I’ve found it to be true. Even if I’ve needed someone to remind me of it occassionally.

So one last time before I hit the publish button and get myself a hot cup of tea and call that particular friend for a bit of a needed cuddle… If you need immediate help, the number for the national suicide hotline is 1-800-273-8255 and they have a chat option on their website at https://suicidepreventionlifeline.org/

When invited yesterday to be a contributor I became excited. Here would be a place where I can, in guarded anonymity, pour out my struggles and, more importantly, share wisdom gained from experiences. Little did I know that I would spend the entire night in a vivid dreamworld that illuminated the depth and width of how I feel at home.

As long as I can remember I have never felt loved, appreciated or wanted by my Mother. This was evident as a child when she either allowed me to be with her in a home where the various stepfathers could abuse me in every way imaginable or pawn me off to my various grandparents. Creating an adult who feels that nothing is ever good enough, who feels like a fulfillment of disappointment , and who lives to find some glimmer of appreciation and love from the person who should give this freely is created by the life I’ve led.

Nothing I do is good enough for my Mom. Nothing that I’ve accomplished is worthy of praise. No matter the lengths that I’ve gone through and the sacrifices I’ve made I remain in a perpetual state of disappointment to her. Some of her life long friends have called her out on this. I’ve accomplished so many praiseworthy things. These include earning four college degrees, becoming a college professor, serving in the military, being a professional athlete on the national level, awards that number in the hundreds and so much more. None of it is appreciated by my Mom.

Last night I had a very real and vivid dream about visiting a small town that I know quite well. Everyone was supportive, happy, attentive, and loving. Everywhere I went in this town I was greeted by a warmth that left no doubt that I was loved and interest in the various aspects of my life was genuine. They even helped me to prepare to return home only to have every attempt fail, yet every time I was sent on my way it was with the invitation to please move to the town as quickly as possible.

Imagine that – being where I am appreciated rather than hated.

This is how I imagine the next life. I think that I’m fulfilling a service to this woman to get her through life. Those who have appreciated me and loved me will one day welcome me into their arms again in a higher level of living. I somehow think my Mom will be there, but somehow put in her place and with the loss of control over anyone else, save herself.

Just so you, the reader knows, I’m very aware of how enabling, dysfunctional, and co-dependent all of this is. I am living in response to a higher authority in my life. The maker of the Way. The whispering of all that is good and right telling me to have forbearance. If I don’t I know to the very depths of my soul that I will learn this in some other way, which I don’t want. I can’t know how this will happen. Would it be through reincarnation to have to suffer through horrific trials again? Would I be required to finish my servanthood in the next realm? Best to listen now and fulfill the requirement as best I can.

Be around the people and in the places that feed you as much as possible while somehow living your mission

What is my goal for the year?

To learn to see myself as the person that people that love me see. A side note of that is to learn to accept compliments instead of finding ways to merely brush them off with unhealthy humor. Or, at least start the journey to get there because it might just be a long, winding, rocky one. I’ve no illusion that it’s going to be an easy path because this particular paradigm was cemented into me from a young age. The longer you let it continue, the longer it will probably take to reverse it. However, I have decided it’s about time to face this particular monster in the closet and serve her an eviction notice.

Paradigms such as this, often have a root belief system in place that causes it to develop. Mine? That I am not good enough or worthy enough to actually be given compliments. That eventually oozed into believing I was not worthy of real affection, let alone love. It’s not an uncommon root belief system. There’s many people that believe that in some form or another, and it came about in each person for various, very individual, reasons.

My Personal Backstory

Where did my belief system stem from? Children should be nurtured into having healthy friendships and achieving their goals. Most would agree with that statement without hesitation. However, not all children receive that, and it can create a long-lasting impact on their psychological well-being. There’s a lot of controversy in parenting styles and it can be difficult when different forms of discipline are discussed to see a clear line between abuse and necessary tactics for the situation. Unfortunately, this isn’t about a fine line.

Imagine you’re a small, shy child in 1st Grade. One of your classmates invites you to a birthday party and you are SOOO EXCITED to come home with that little invitation. When you show it to your parents, they laugh and say that the only reason you were invited was to get presents because nobody is really your friend. 1st Grade. A tiny little shy child, in first grade, hearing from their parents that nobody really liked them, they just wanted another body there to get gifts from. This response never changes through many similar events until much later in life.

Now imagine that same, shy child growing up through elementary school and developing an interest in art. That tiny, beautiful little mind wanting to draw everything they saw in nature and everything their imagination could come up with. Yet when they would show their parents something they were particularly proud of, it was only met with harsh criticism. The proportions were off or the eraser marks could be seen. It wasn’t good unless it was close to perfect. As the child grows into a teenager, each interest they have is met with that same, harsh, criticism that whispers “You’re just not good enough for me to be involved in your interests.”

Children are impressionable things with minds that absorb their surroundings and build a world view around them. If what they continually were exposed to was a constant flow of exceptionally harsh criticism along with belittling, it only follows that eventually…they’d start to believe this was reality. They were not good enough. They would never be good enough. Many in that environment just stop trying because it is seen as a waste of time. They’ll always be the weird ones that people are only nice to and compliment out of pity no matter what they do. Why bother?

This is especially exaggerated when the child does receive compliments from others, only to return home to mocking. Sometimes, criticism of the person that delivered the compliment and a harsher break down of the flaws in that work that was praised follows. “You’re not good enough, and anyone that says you are…they just don’t know how you REALLY are”, is the message that is delivered with increasing intensity.

The above examples are part of where my belief came from. When I had adults reach out during that time, I was unaware that they were actually reaching out and instead took it as some kind of potentially cruel joke. It wasn’t until I put myself into therapy before graduating High School, that I even considered that I might be wrong in my approach to myself. That maybe, I wasn’t at the core of the problem.

Why This Recent Goal?

It was a long string of events that really seemed like a message I couldn’t ignore. Something bigger than me seemed to be yelling, “Would you work on this already please?! You’re missing a huge, beautiful world out there!”

Over the past 2 years, I’ve had a pretty intense struggle with my health. Being diagnosed with Ehlers-Danlos, going through surgery, recovering from odd complications, Hurricane Matthew bringing 2 feet of storm surge into my home, major changes at work….the list could go on. Friends were there to help as best they could. Sometimes it was just letting me vent on the phone and sometimes it was something major like helping me to get a shower after surgery. It took me a long time to accept that these people weren’t just helping out of obligation. It shook my reality a little bit to know that these people were helping me because they really just cared for me. This, is something that should have never been a huge revelation…but it was.

Recently, I have gotten to know someone I deeply admire, respect, and even care for. When he wrote me a very sweet compliment of being intelligent and cool…I brushed it off and made a sideways joke of just saying that because I brought chocolate earlier. My other half, scolded me. Later on, so did the other person. I can’t tell you why that interaction in particular shook me the way it did. I had done it so many times before with so many friends. One of my closest even had a discussion with me that he often picks on me in odd ways because he knows it just makes me suspicious if he would be straight up nice. We had a laugh about how screwed up that was and I forgot it…until it finally struck home just how screwed up that behavior was. Until now.

I don’t easily care for people, and I don’t say things like “I love you” unless I mean it. I’m kind, and I understand everyone has their life going on so I try and bring a bit of cheer to their day. But actually caring about someone to that I get close to them? It’s a rare thing. Mostly because of all that past baggage I’ve not yet found out how to drop it off. So when I do, it’s a major thing for me, and I hold those people close. At the same time, there I was unwilling to properly accept that someone else could possibly even consider wanting to have any kind of positive connection to me. I would be crushed if I found I made someone feel unloved, yet I was inadvertently directing those feelings outward to people who never deserved such suspicion or flippant responses.

It hurt. I cried. I had a breakdown.

Then, I got angry. How dare those thoughts and feelings stand in the way. How dare those things from so long ago, creep in and try and keep me from getting to know amazing people. How dare they keep me from being proud of things I’ve accomplished so far. How dare they keep me from accepting that people are allowed to see beautiful and incredible things in me.

What To Do Now?

I’ve got enough faith in myself matched with stubborn ambition to approach this head on. To attack this to the best of my ability. I put myself into therapy back then, and I decided not too long ago to return. I’ve also got the added help of Lexapro. Most importantly, I know I have friends…no…extended family that will remind me of my goals and correct me when I need it.

I am not in this alone. Anyone out there struggling with similar issues…you’re not in this alone. Sure, we all have flaws. Even fatal flaws. But none of that means that we are not worthy of appreciation and affection. Whether you were taught otherwise from family, husbands, wives, friends…you are worth it. You have something incredible and unique about you. Don’t ever let anyone extinguish your flame because they’re too cold and hardened to appreciate it.

When those terrible thoughts surface, ask yourself who said that to you first? Where did you first hear that from? Even though they’re things we tell ourselves, it always has come from someone else first. So dig deep. Figure out who first to try to snuff out your light? Acknowledge that the voice isn’t really yours, it comes from them. Think, what would be different if you truly believed that statement was untrue. Then…tell it to fuck off as many times as necessary.

Why Do So Many Zebras Feel Like A Black Sheep?

It’s ingrained in us to expect support and comfort from those closest to us, our direct family members. Humans are built to want a close bond to their parents and it’s completely natural. When you’ve got a disorder that presents unique challenges however, it can strain the bonds of that relationship through no fault of anyone involved. Sadly, this can also have long term effects on the way a zebra child develops into an adult.

I will use my own personal stories as an example here. I first had noticeable hip problems with clicking and subluxation around 4th grade. When I went into the pediatricians office and complained about it during one of my check ups…the doctor told my mother and me that children my age don’t have joint problems like I’m describing and I probably just need more exercise. I’m either looking for attention or I’m weak. To my mother, it seemed pretty logical. Looking at a lot of normal cases, I can see where it made sense to her. So she acted accordingly and I was deemed the drama queen. Phrases like “You’re always complaining about SOMETHING!” became common place. Doctors were used as a type of threat, “Well if you feel that bad, we’ll have to go to the doctor…”, always in a tone that was a plea for me to knock it off.

Other family members weren’t of great help. Then again, when they hear stories about how you’re overdramatic…they’re just responding to what they’ve taken as truth. To be honest, Ehlers-Danlos presents in almost unbelievable ways. You’re a young kid and you have joints that just kind of damage easy but nothing seems to show up on exams? You say things hurt but there’s not diagnostic that shows any kind of damage? Sounds like a kid trying to get out of gym class to most people. I’m not going to make excuses or pretend that what I experienced was okay, but I make it a goal to try to understand why hurtful behavior happens whether I approve of it personally or not. I could lay blame to my mother for not finding me a new doctor or the doctor for being an ass, but that doesn’t really help anything aside from helping to acknowledge that it wasn’t my fault. Either way, it let to me feeling like I just didn’t fit in the family.

But You Talked About Long Term Effects?

This is much more than just someone complaining that mommy and daddy didn’t give them enough hugs as a kid. When you’re developing, you don’t have the full power of your frontal lobes to reason out things. Your experiences as a child set the paradigms for how you learn to see the world. When you are told that you are just looking for attention, or treated as a drama queen when it comes to your physical health…that becomes part of your world view. Some will accept it and intentionally act out to better play the role, some will internalize and feel that they can rely on no one, while others will simply get angry. There’s no one set way in which people in this situation will develop. All people are just trying to do their best to survive.

This does start to impact long term relationships with friends, family, partners, and even doctors. Again with my story as an example, I internalized it as I was inherently flawed. That maybe I was just weak like they said. I constantly pushed myself despite pain to do tasks that my peers could perform without issue. I stopped complaining unless the discomfort was severe and I wasn’t able to fake it anymore. I thought that the pain I felt in my joints was something everyone felt, and I just was too weak to handle normal life. I didn’t ask for help, and I didn’t have a good communication with any of my doctors. Growing up as I did had taught me that there will be no help for my issues…so why bother trying for any? And let me tell you, you can’t have a healthy relationship with a partner when you think it’s normal to not discuss when something is upsetting you, no matter whether it is physically or emotionally.

It even had a negative impact on my spiritual health as people told me God doesn’t like people who lie (insinuating again that I was a drama queen). It got worse as I started to show signs of clinical depression because maybe if I gave my problems to God, I wouldn’t be struggling so much. I even had a doctor tell me that if I went to church, maybe I wouldn’t have any of these problems. Being raised in a religious family, that further added to the feeling of isolation as it was hinted that maybe I was just a bad person and being punished. I felt abandoned by family and then by God.

The core problem, was that nobody was listening to me or trying to do anything about the suffering I was under. Granted, it was because to them it seemed to fall outside of their medical knowledge and didn’t make sense. Still, there are a number of problems that developed through my life that have roots in being made to feel like I was so different from everyone else. I pulled back from a lot of social interaction. It only added to the clinical depression and anxiety as I started to really believe that my worth as a friend or partner was limited because I’m inherently broken. I started to believe that doctors weren’t worth going to because all of them (excluding my current medical team) treated me like I was making it up. This kind of thinking was well cemented into my mind before I even approached 18. I was the freak that nobody understood, and nobody wanted to understand.

Are You Saying Children Should ALWAYS Be Believed?

I’ve seen my fair share of children telling tall tales and been there when my peers tried to contrive stories to get out of gym class. So no, I’m not saying that the solution is to just believe children. I don’t think I could even give a good answer for a blanket solution. However, I do think that if people were more aware of what it can feel like as a child growing up with an odd chronic illness can be…maybe it’s something that can just be kept in the back of the mind as they watch other children grow. Perhaps we can foster an awareness that instead of treating a kid as “that one that’s sick all the time” they should be shown the same support that all children require. To not pick on children for being weak or damaged because they suffer with something out of their control.

Maybe if we share stories of being told by pediatricians that we were just weak when in fact we have a collagen disorder that created severe issues…maybe we will have more people being diagnosed before something more serious damage is done. Maybe we can foster future physicians to carry more of a compassion for when things don’t fit into a nice and neat diagnosis box.

Once The Black Sheep, Always The Black Sheep

So far, I’ve talked only about the impact on children, but this kind of dismissive attitude doesn’t just impact children. I can’t count the number of times I read that fellow zebras are worried about going to family events because someone there always nitpicks. Why are they tired? Why do they have a cane? Why don’t they work more? Why are they complaining more than Grandma? Why do you act sick when you look fine? Why are they on a strict diet? Why did they go for surgery? Being offered a slew of useless advice. You can probably imagine a lot more than what I’ve listed here, as most of us have encountered similar statements on a regular basis.

So many zebras have this fear of talking with family. Some of this could be solved by explaining about what your illness does to you. So often though, no amount of explaining will help these folks because too many face family members that would rather stick their heads in the sand. It is more comfortable for them to live in denial than it would be to face the truth about rare illness. This is not always done maliciously, even if it feels like that to the zebra in question. I feel it’s important to state that. People will always have a hard time coping with things they don’t understand. Those of us with the disorder, we don’t really have a choice if we want to survive. For them? Life makes sense when there’s cause and effect, when there are problems that are common and can be fixed. Ehlers-Danlos is neither common, nor fixable. That’s a huge thing.

It doesn’t make their avoidance of truth okay, and I am in NO WAY insinuating that it is a viable reason to treat another person badly. What I am saying, is that don’t assume your relatives are terrible people because they can’t understand. I am saying don’t burden yourself with constantly trying to prove to those difficult members that you are, in fact, sick. I’m saying you don’t have to accept their behavior to you as okay, but it may be in your best interest to accept that it is the way they are. No matter how we may wish them to be different, they are just people.

Where My Story Led Me

I don’t have a wonderful relationship with much of my family. Some of this is because I am a fairly unique individual compared to the rest of them outside of my disorders. I make jewelry out of bones and keep snakes and spiders as pets. I left the church and found a new spiritual path that is fulfilling. I dye my hair fun colors when I get in the mood. I’m an odd duck in comparison. I set personal boundaries for what I will and not tolerate, such as I will leave a conversation if it starts to smell of condescension. This doesn’t come from a place of anger or pain, simply that I’ve got better ways to spend my time. With Ehler-Danlos constantly threatening to strip things I enjoy from my life, I don’t want to be a part of wasting my time and energy on pointless arguments.

When I say these things like this face to face, people seem to imagine me storming out or being petty about it. I can assure you, that’s not what it’s about. It’s simply acknowledging that the road that I walk is hard for them to understand. They are not in a place where they can feel comfortable providing the support that I sometimes require. It doesn’t make them inherently bad people, just as having Ehlers-Danlos doesn’t make me inherently a person broken in all ways. It just means that we’re not compatible in that way. Wishing or pushing them to be different, is as pointless as them wishing and pushing me to be something other than a zebra. I also see it as a type of self-love. I care and respect myself to not try and deal with things as they are, but instead foster a group of close friends that can understand and are in a place that they can comfortably offer support. We all deserve love and support of people that care, and there is nothing wrong with getting different types from different people.

It’s normal to feel outcast and angry if you happen to be in a similar situation. Those emotions are perfectly healthy. But we also owe it to ourselves to deal with those emotions in healthy ways rather than trying to drag horses down paths meant for zebras and then continuing to feel angry and hurt that those same horses just don’t get it. If you’ll forgive the continuation of the zebra and horse metaphors, I feel it’s the responsibility of other family members, that when they see on of their herd standing out a bit, to understand why they’re different and respect that they’re just a different breed. I also understand that just because I feel it’s a responsibility that falls on their shoulders…doesn’t mean it’ll happen that way or they’re capable of doing so.

Sometimes, you’ve just got to find your own herd. Or in this case…find your DAZZLE!