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!

…more than likely, you just want a place you can talk about what you’re facing and feel normal again. What could be better than a place where other such people congregate? It sounds like a good idea, right? Support groups really can be wonderful places when you just need to get out the things that are clogging up your thoughts and they’ve helped a lot of people! This post is not to discourage you from seeking refuse among fellow survivors, so please don’t take it that way. We’ve suggested support groups in articles before. However…

The problem with seeking out havens where abuse victims, survivors, and suffers congregate is that they end up attracting those people who are truly attention seekers as well. These groups tend to become locations for people who want to publicly measure their suffering penis length or play the Pain Olympics. You end up finding those people whom you find yourself questioning how genuine their experiences are as they constantly flip-flop the history of their story, trying to soak up any and all attention they can get. Their stories sound like everyone else with just a bit more drama and anyone who presents with the slightest skepticism or question for elaboration is met with hostility matching that of an active volcano. We’re talking about psychic vampires. Not the mythical creatures that you might find in a horror movie, but a specific type of person that seems to be a black hole of negativity no matter the situation. These kinds of people are not only the “Debbie Downers” of the group, but (like Hollywood vamps) can easily “turn” you if you don’t know to be on the lookout.

They’re Not As Easy To Spot As You Might Think

Identifying problematic people can be messy because there are always going to be times where we will have gone through similar experiences as another, but slightly worse. Because of this, we should be hesitant to be hypocritical and unsupportive of a fellow group member that is saying how they’re going through a rough patch…at least…most times. Sometimes, we even become afraid to share our own stories so we don’t come across as minimizing the suffering of someone else. There is truth in sharing can create empathy, and that is, in fact, what the groups are there for. There is also a fine line between sharing in solidarity and playing Pain Olympics.

In fact, that feeling of fear in regards to sharing our stories can often come out of interacting with a psychic vampire, knowing that this type of sharing can catch the attention of the type of person that will draw attention and sympathy to themselves while minimizing your experiences. Those that seem ready to jump on any post with how much their suffering is so much more extreme that you should be grateful that you don’t have their life.

This all has the potential to create a further feeling of isolation because in a group of what was expected to be similar minded peers, you again start to feel like the odd sheep out. Instead of finding support, we start questioning whether we should feel as if we’re struggling in the first place compared to those that loudly cry about how they’re suffering so much they are useless. Instead of finding encouragement, we find ourselves surrounded by those loudly cry how we shouldn’t do anything or how our accomplishments make them feel bad about themselves.

Making a Psychic Vampire

It’s not as nefarious as it sounds. Often, those of us that are living through invisible illnesses…we lack validation for what we’re going through. You see it in those that have been recently diagnosed. It’s talked about often as they go through the intense journey of processing what their diagnosis means to the rest of their life and even their past experiences. They ask 5,000 questions about what is normal and abnormal and common and if anyone else has suffered like they have. This is completely normal and it was touched on in a past post how a diagnosis can be a curse and a blessing at the same time. It is nothing to be ashamed of, hide, or shoot holes in if you’re on the outside looking in. It’s an important part of learning to travel the road of coping.

The problem comes about when that feeling of validation and support is too good to ever let go of so we can progress above it. The idea is no longer finding support. It is no longer showing empathy. It is simply to commiserate and continue the attention that has been lacking for so long. Psychic vampires don’t want to progress into feeling better because that means they no longer get the sympathy and attention they feel they need. Therefore, they don’t want you to feel better or focus on positive either because that means they’re more likely to be outed for what they are. They’re good at a sneaky kind of manipulation, that may not even be a conscious effort. They’ll respond in a heart beat to a post about how things suck to compete in Pain Olympics, but they’ll ignore more general or informative posts. They’ll constantly ask for encouragement on bad days but refuse in angry fashions when advice is suggested. And this is not a rare occurrence, it is all the time. In this way, unless you’re conscious of this process, you may start to find yourself interacting with these groups simply to complain and whinge rather than continue on a path that may bring you relief of any measure. Why? Because they’ve shown you that you get more attention and sympathy if you play Pain Olympics with them than you do if you choose to be hopeful towards the future. You get more “likes” and comments if you continually go over rough moments than if you share happier times.

There is also a type of awareness that one can sometimes gain from living through trauma of any sort; how to hurt people. We learn by watching and experiencing it first hand. It is one of those things that tends to be overlooked and ignored. yet a large number abuse victims and chronic illness patients we’ve met have “teeth and claws”. A morbid sense of humor or a quick wit. And yeah, this is part of how we survive and also part of how those cycles continue. There is this moment and feeling of power that comes with the moment we realize we can use what was once used against us. Not saying it is a good feeling or a liked feeling, but that moment when you have been through the pain and later someone provokes you…you find that perfect way to lash out at them that leaves them stunned? You suddenly go from helpless to powerful. It is a dangerous cycle and in a way it gives suffering a life of it’s own, after all that is almost a form of procreation in an abstract way of thinking about it. But unless we are careful to be aware of that potential within ourselves, we can easily find ourselves lashing out at support group members that have rubbed us the wrong way for a variety of reasons. They have a lesser version of our illness, so lashing out and making them feel small brings satisfaction that our pain is bigger and worth more.

It’s easy for anyone to slip into that has experienced long-term suffering. These actions lay between a security blanket of support and the power control brings. As said above, it’s not that most of these people are consciously making a decision to do this, and that’s the part that can make it difficult. They’re suffering, in more ways than one. but the scary part is the potential to be dragged down with it.

So What Do You Do?

The main thing is to be aware of it. Know that it is absolutely okay to reach out in times of need, but to not make it a way of life and to not engage those that are doing so. Don’t think you should go on a Psychic Vampire Crusade, for in truth, these people are just suffering and have decided that they’re not able to look for the light at the end anymore. You don’t need to point out their pain to them, just as you don’t need people to twist the knife in yours. Don’t spend your time hunting them or trying to fix them. As with all of us, people can only be helped if they are truly ready to step out into the sunlight on their own. You know that old adage how you can lead a horse to water? It works for people too.

If you find yourself getting down and drained when interacting, take a step back and interact with people or things that bring you joy. If not joy, at least comfort that doesn’t surround living in negative moments. Watch your favorite Netflix series, read a book, sleep, find a friend you’ve gotten out of touch with and reconnect. If you don’t have anything like that? Find something new you’d like to try. Give embroidery a shot and see what you can accomplish. Have fun with finger paints. Go to a coffee shop with live music. Accomplish something, no matter how small it is, and celebrate.

As said earlier, every one of us will have bad days, bad weeks, bad years. It’s not about never having them or never showing that they’re suffocating you in this moment. We can’t always be superheroes and push ahead full steam with a smiling passion that rivals a manic pixie. We need to face those times, and we need to reach out in those times. But we can’t afford to live there or let others drag us down to revisit that place any more than needed.

Just on Weight Management

So I have a (moderately) strict lifestyle diet when it comes to my food. I am gluten free and am supposed to stick to about 60 grams of carbs a day, lots of protein, low dairy, and lots of saturated fat. My other half jokes that I’m the only person he knows that the doctor said I can have loads of bacon, and it’s the truth! Even with that lovely grace of bacon, it’s a really difficult diet to follow. As difficult as it is though, I try to stick to it as best I can because it came out of years of trial and error and help from my whole medical team (which currently sits at 9, including an acupuncturist that networks with some of the traditional medicine team). Being on it, I’ve lost weight and continue to do so VERY slowly. This isn’t because it’s the best diet out there, but because I’ve found a way to work with how my body processes food.

Getting Into the Illness Aspect

All that was just weight management, but my particular diet has also helped me regain some of my health though the years of following it. It’s been a long hard road, and I can’t properly express just how infuriating it is to hear these snake oil salesmen touting their miracle diet that goes against doctor advice because theirs will fix all my problems. Let me be quite clear here….

NO DIET WILL COMPLETELY FIX YOUR HEALTH

Now before you jump to the comment section, that’s not to say a specified diet will not limit, manage, or reduce your symptoms. Of course it can! But we, as a whole, need to really step away from trying to push our diet agendas on those with chronic illness. What can be beneficial for one, such as low salt for high blood pressure, can be terrible for another, such as POTS that needs a very high salt content diet. Soy for some is a great source of non-meat based protein but can disrupt the endocrine system for those of us with PCOS, causing weight gain and increased complications with our hormones. Carbs are great as a source of energy if you need to work hard, unless you’ve got insulin and/or glucose resistance and then your body just decides it can’t break them down so it stores it and leaves you exhausted. Fruit is fantastic for the average person, unless you’ve got glucose resistance and then your body decided that it needs to store all that simple energy or let it the insulin float around the blood stream instead of using it. Red meat is absolutely fantastic for someone like me, but not for someone else who it triggers their IBS symptoms.

I don’t care what diet you personally subscribe to. Paleo, keto, atkins, low carb, low sugar, vegetarian, vegan, low acid, grain free, raw, alkaline, smoothies… There is not one “all size fits all diet” in any way. That doesn’t even get into the extreme end of the home remedies. David Avacado Wolfe should be considered the bane of all of our existence…seriously. Stop acting like you know what diet is best for your friends, your loved ones…and for goodness sake…stop accosting strangers! I had a woman approach me because she had seen me walking with a cane and order a sandwich with roast beef. Didn’t I know beef was probably the cause of why I’m walking with a cane? Even after I said “No, I just had surgery not too long ago, that’s why I’m walking with a cane”, that didn’t stop her. She just told me I wouldn’t have needed surgery if I wouldn’t eat meat. Yes…obviously eating meat changed my genetic make-up that created weak collagen. I’ve been living a lie. Thank you for making me see the error of my ways. Stop giving us crazy food advice! Please!

Research Can Be Difficult

Learning about proper nutrition is complicated, there’s a reason that nutritionists have to go to school and not just read a few health articles on Natural News and watch a few Dr. Oz episodes. Every body is different, and sometimes drastically so. I truly wish I had an easy answer that I could share with all of you. I wish I could share my food lifestyle and know that it could help everyone as it as helped me. Hell, I wish there was a set option I would have instead of struggling along and hoping for the best!

But there is good news. There are plenty of things that we do know about certain chronic illnesses. We know for PCOS, a low carb diet often works because of how the syndrome often directly affects insulin acceptance by the liver and they think they even pinpointed the gene. We know complex carbohydrates are bad for diabetics, especially in large quantities. There are general rules out there we CAN find and follow without going to extreme changes in a desperate hope to be cured. Research on sites dedicated to your specific chronic illness and stay away from anything that sounds like a miracle cure unless you’ve got some credible sources stating some really promising study evidence. If you try something and slide backwards? Make note of it. Talk to your doctors about it. And don’t force yourself through feeling terrible unless your doctor gives you a reason to. When I first went to gluten free, I swear I had the worst flu of my life…but it was just my body throwing a tantrum and it only lasted a week. Then I started feeling a lot better. But I talked to someone instead of just suffering in blind hope.

I don’t personally like the phrase “Love at any size” as a way of saying it’s okay to eat whatever you want and consider yourself healthy no matter how much you weigh. I do think we need to show love to ourselves no matter what size we happen to be though. Treat your body well, it may be flawed, but it’s the only one you have.

Why Are They Considered Bad?

Do a quick search on Google and you’ll get a ton of articles that will give you a list of what they consider negative emotions and what to do to get rid of them. We’ve also all had that well-meaning individual that when we’re feeling bad does their best to pull us out of it. But what makes them so bad?

The biggest reason is that they are uncomfortable to experience. Even when reading over the small list I had above, some readers will internally cringe or feel a wave of sympathy. Some may have even gotten uncomfortable at the title of this article. They’re not nice things to go through. As we develop into adulthood, we’ve learned along the way that uncomfortable equates to dangerous and dangerous equates to something to avoid. It only goes to follow that emotions that make us feel that discomfort, get categorized into bad.

Another reason is something that I’ve mentioned in an earlier article about physical pain, we don’t like to see our fellow humans in pain. When we see someone that is in the middle of facing a “negative” emotion, the reaction for most of us is to want to make it better…to fix it. So we offer condolence, try and make them laugh, tell them positive things going on. Their discomfort makes us equally as uncomfortable.

There is also a physiological correlation between those types of emotions that I touched on in an article about talking to your body. Studies have shown that certain emotions have a negative impact on the immune system, heal rates, and organ function. With all of that, the evidence seems to point in favor of avoiding or trying to get rid of those emotions as quickly as possible, right? Well…not really.

To Feel Is To Be Human

All emotions are equally important. ALL OF THEM. Whatever you feel, however you react to a situation…is okay. Let me repeat that. Whatever emotions you experience is okay and normal, even if you don’t like them .

To be human, is to experience the whole spectrum, not just the pleasant things in life. We can’t sever or bottle things just because they don’t feel nice at the moment and expect to function at our best. Whether we like it or not, ignoring an uncomfortable emotion carries with it the same risk as if we choose to ignore an ailment that is purely physical such as a sprained ankle. Pretending it’s not there doesn’t remove it, it just increases the potential for the damage to become worse. What’s even more dangerous about when this is done with emotions, is that we can lie to ourselves convincingly enough that because we don’t have a direct correlation, such as a sprained ankle would with increased pain, to let us be acutely aware of this escalated damage. Symptoms that can easily be written off such as decreased appetite, restless sleep, moodiness, headaches, fatigue, stomach upset, forgetfulness..can all be attributed to other aspects of our life rather than to emotional causes. It must be something we ate the day before, or an allergy because if it’s “bad” emotions we might actually have to do something about them.

This doesn’t mean I’m encouraging you to carve out a place and wallow in them. Nor do we have to make a banner out of our less pleasant emotions and wave it around wherever we go. But we shouldn’t try and pretend they don’t exist or try and convince others to push them out at all costs. You’re emotions are a reaction to what’s going on around you from your brain. Consider it the same as when your nerves send an excited chill at a lover’s touch or pain from touching a fire. In that sense, acknowledging sadness is just as important of an emotional message as joy.

So What SHOULD We Do?

With the flood of suggestions about how to remove them or hide them, what should we really do when those “bad” emotions show up?

Well….

Accept them.

It sounds simple, but in today’s age that’s a really difficult thing to do. So many of us are so used to shoving them in a dark place inside ourselves that we are unaccustomed to dealing with them in healthy ways. We explode at the source of those less than pleasant emotions or those we care for because they’re closest to us. We indulge in coping mechanisms such as video games so we can drown out the painful reminder of whatever is crushing us at the moment.

But it doesn’t have to be that way.

Letting yourself be angry or sad or frustrated and acknowledging to yourself that it’s okay to feel this way is SO VERY IMPORTANT! Until we do these things, all the positive thinking in the world isn’t going to help, especially when you’re facing chronic illness. EDS folks, we deal with constant pain and limitations because of how our body is built. If a professional athlete is allowed to feel upset and frustrated as they’re healing from an acute illness, we are allowed to be frustrated and upset at our life circumstances! You are allowed to cry. You are allowed to scream. You are allowed.

Now, like I mentioned above, you don’t have to live there. The idea behind this is that you need to allow, and then show yourself compassion about it. This can be as simple as holding your hands over where the emotion feels the strongest within your body. Does it tie your stomach in knots or make your heart ache? Hold your hands there. Hug yourself. Cuddle a stuffed animal there. Allow yourself to embrace that crappy feeling and comfort where your body is feeling it. It can sound a bit on the silly side, and may even feel that way doing it, but it does actually stimulate our nerves and can have a relaxing effect.

Then, let those emotions work FOR you instead of against you. I will use myself as an example. With all those things I listed in the beginning of this article, I am angry and disappointed. It started as anger towards everything and disappointment in myself if I’m to be honest. I felt like everything I did wasn’t helping and obviously I had to be doing something wrong. Maybe life just hated me that much. Maybe it’s not even worth trying anymore to improve my ankles because I’ve been facing this since last October and having so many problems that shouldn’t have happened. I tried to hide it at work, and from those I loved, because I didn’t want to be a burden. One day it got so bad, I completely broke down. I cried and hugged myself while I sobbed in the shower until I used up all the hot water about my circumstances. All of it came out. The fact I will never shoot archery again. I will never run again. I have to regulate how often I can do my artwork. I can’t do what I used to at work anymore. I will never get better. It felt like the internal pain was so overwhelming that it would never stop. It was embarrassing and I hated it.

But the tears did stop. And you know what? I felt better for finally releasing all of those things that I was trying so hard to pretend didn’t exist. I got angry at the depression and at the EDS for making me feel helpless. I got angry that I allowed myself to do this TO MYSELF! What did I think I was accomplishing? Hell if I’m going to let this stop me from being creative, or living my life. Yes, all of that sucks. A lot. More than I know how to properly express. But that doesn’t stop me from trying to figure out a way to accomplish new things, or inventing ways around my limitations to do what I’d like at least a little bit. I stopped turning those emotions inward, and used them as motivation to move forward.

It doesn’t stop things from being hard. The idea isn’t to stop them anyway. The idea is to let them do their job so we can move past them. Using them as signals of something we need to change either in ourselves or our surroundings to improve our quality of life. As an alert to turn inward and see where the core of those feelings start from and learn to grow as people from them. We can’t do that when they’re stuffed into a box deep inside the parts of our mind we don’t want to look. We can only do that when we dust off that box, and take it out into the light and look at ourselves with the compassion we all deserve.

Wishing you all, all the love.

I Just Want Answers!

There is a line that most people, whether they’ve already got their diagnosis or are still searching, don’t like to talk about when it comes to the process of getting answers. It’s a very sensitive topic that often stirs up a lot of heated conversation. It follows the phrase “What do I say to get my doctor to diagnose me?”

There is nothing inherently wrong with this phrase. It is merely indicative of the frustration that we all feel when walking the path of finding answers. Imagine for a moment, that your arm is in intermittent pain with such intensity that you drop anything you happen to be holding. Wisely, you go to your physician to diagnose and fix this problem. Despite multiple tests, they tell you that your arm is fine and is showing no issue. To make matters worse, it never seems to act up while at your office visits. At this point, you KNOW something is wrong because it is impacting your ability to function at home and work. You get referrals for specialists in hopes that those that have an area of focus in your particular problem will know something your primary care does not. Yet it yields the same results…there is no reason that shows up in testing to account for the symptoms you are explaining. After a year of this, your physician is starting to show signs of frustration every time you see him. Coworkers and family members begin to treat you as if you’re just being a drama queen because if it was a real problem you would have found a solution by now. But you still KNOW that this is a very real problem that impacts your ability to do normal tasks and now your emotional well being as you deal with others in your life. You’ve tried to even find your own answers through websites and community forums.

Now imagine that through one of your many community forum explorations that you find a group of people that seem to have similar problems but have received a diagnosis AND treatment! Can you not then imagine that you would ask what they did to get their help? It’s a natural and understandable progression in the journey to find solutions. You’ve been wandering around in dark tunnels for so long and have now finally found a light at the end of the tunnel and you want to bolt full speed towards it before you lose hope again.

Walking The Line

So where does the fine line I mentioned come into play? What we can sometimes forget as we run full speed towards that light, it’s not in the direction that’s meant for us. It can lead us to make rash decisions or changes to our health that have damaging potential rather than lead to improvement. It’s the fine line of using additional information that will assist your doctors in helping you vs telling your doctor what you think they need to hear to get the answer you think you want to hear. It’s incredibly tempting to exaggerate your symptoms or lie about what you experience if it will increase the chances of finding relief after so long of searching and suffering.

Coming up to this metaphorical line has a lot of benefits. It brings with it talking about symptoms that we have overlooked along our journey because we have normalized them as a part of daily life. It carries with it possible diagnosis to suggest to our physicians as they walk this road with us. It brings us down tunnels that we’ve previously overlooked. If we allow ourselves to trek these options with caution rather than give into the desperation that threatens to take hold, we give ourselves the proper time to make sure that this will lead us to the best options available.

It’s Not Easy

It’s about on par with the effort it takes to ice skate up an incline. Though I write about it, I’m currently struggling with it as well when approaching my chronic breathing complications. I’ve had to learn the hard way when I pretended my breathing issues presented in different ways during a time in my youth just so I could have the treatment I was convinced I needed to improve it. It ended up creating greater breathing issues as well as having an effect on my heart during treatment. Thankfully, it was completely reversible once I stopped the treatment, but I was lucky. It also served to profoundly confuse and frustrate my doctors rather than give them better diagnostic information. Despite this, I find myself STILL briefly considering telling the pulmonary and ENT things are worse than they are out of frustration of not having an answer after 15+ years of trying.

What keeps me from falling to the wrong side of that line is two main reminders to myself. The first, is the memory of my past experience. The second? Knowing that I’m not only helping myself the best way possible, but future patients that may be experiencing the same issue. If my physicians and I find the right answers while being honest, that information will spread and help others. Maybe not directly, perhaps it will be in passing conversation during a conference or a publication later down the line. Perpetuating the exaggeration or intentional invention of symptoms only serves to make a correct diagnosis more complicated for future patients.

But My Doctor Still Won’t Listen!

Not all doctor and patients are a good fit for each other. I went over some of this in a previous post. While there is always the potential to have a bad doctor, it’s wise to remember that every doctor has their area of comfort and specialty. Sometimes this means that you need to find a doctor that is a better fit for your needs. If you can’t find an answer together, it may behoove you to get a second opinion. This should not be an angry slight at your doctor, but rather seen as just a move to search down the dark tunnels with a different guide. Though it should go without saying, getting a second opinion should also not be used as doctor hopping until you get someone that will give you the answer you WANT.

Searching for answers it tiring, and my heart goes out to all of you facing similar paths that I’ve gone down and those that I’m still traveling. I wish with everything I’ve got that everyone could find answers and treatments that worked the first time. But since this isn’t an option for many like me, I will extend my wish that your journey bears sweet fruit…no matter how long it takes it to get there. Take the time and compassion towards yourself that you deserve to make sure that what you’re heading towards is an answer that will lead you to your true light at the end of the tunnel rather than into an oncoming train because you denied yourself that critical approach.

…is that it is surprisingly isolating. In an odd way it gives one some sense of what it is like to live in the closet in earlier years. We, as a culture, don’t even like to talk about trauma in an abstract sense let alone in a productive way for those that have gone through it. Actually, George Carlin had a bit about this on the topic of Shellshock/PTSD that very much relates to this. Just remember that comedy works because by and large it is a truth, an uncomfortable truth that we have a cathartic laugh about to feel better.

Hearing it put this way really seems to suck the humanity out of painful experiences, or at least what is deemed “negative” from those on the outside. Changing the words we use to even discuss trauma, to make them more comfortable to speak aloud, also has the effect of pushing those that have gone through it further away from those bringing it up. Making the terms to discuss trauma more polite, eventually we come to view the effects of trauma as being less severe to mirror the terms that have been used. We rely a lot on our words, so while Shell Shock sounds as terrible as it really is, Battle Fatigue sounds like all they need to do is take a rest and they’ll be fine.

There is an element of human nature in this. We want to fix people. We want them to be better and not in pain. When they’re in a type of pain we can’t fix, it makes us VERY uncomfortable. What’s the next step? If we can’t fix their problem, at least we can fix how uncomfortable it makes US to acknowledge it. Our brains can be so overwhelmed by our own discomfort, that we forget to remember those suffering and keep them within our own spectrum of empathy. But in doing that, we inadvertently are saying to those people “stay away from us while you’re like that” or “I can only deal with you when you can pretend to be okay”. So…to not be so alone…we adapt and learn to have a variety of social masks at our disposal.

When Pretending to Be “Normal” Becomes Second Nature

There is this point where you have been in a bad way for so long that you’ve normalized some of the tragic things that have happened to you and that you have seen, such as being abused as a child. Then one day you find yourself in a group of people and you mention “yeah my mother use to do X” and all of a sudden people begin reacting with a display of sympathy or thinking you are attention seeking. This can be as shocking as it is isolating because sometimes, we just want to talk about our past like everyone else seems to. To talk with someone who has been there just to banter about it and feel like it was normal. We’ve already gone over it in our minds enough that we’re a bit desensitized to the experience, or maybe we’ve managed to convince ourselves that everyone has gone through similar experiences.

The reaction from our peers, jolt us back (often very unexpectedly) to just how different our experiences really were. It mentally launches us out of whatever group we happen to be interacting with at warp speed complete with barbed wire barrier and nothing but a tin can telephone. The mask has slipped down unintentionally and, even if we quickly put it back up with some crafty application of gallows humor and a new mask that has a convincing smile, our secret is out and there’s no going back. Or…at least that’s how it feels. That only increases if we perceive that our circle of peers begin to treat us differently. “Perceive” is the important part of that statement because it could be actually being treated differently or we’re expecting it so much we see it when it’s not there.

Isolation and Our Relationships

This one aspect (of many) is why some abuse victims remain with their abusers for so long. They decide that the isolation of the outside world is too great and maybe, just maybe, staying with the one person who understands and seems accepts your damage is not so bad after all. It can be easy to blind oneself to the terms of that perceived acceptance. After all, they think to themselves, a little gaslighting and scapegoating is not so bad when compared to being out alone in the world that doesn’t understand you, is it? At least with the abuser you can put on your choice of masks to get through the day to day while still having some measure of a twisted form of acceptance to go home to. They make knowing what mask you have to put on predictable, and again, comfortable. Still though…ever see those pictures of what happens when you wear tight shoes or corsets the wrong way for too long? We are shaped by the masks we wear.

Similar to the tight shoes and improperly worn corset, if they’re worn for an extended period, it can become a hazard to then take them off. Our masks are no different, we start to rely on them instead of being able to realize when it is something that needs our attention. We don’t know how to function without using them. It makes it increasingly difficult to associate with “normal” people. Hiding behind the masks becomes our new normal and comfortable way of life and the thought of leaving that behind is (or at least can be) paralyzing. It means facing all of those horrible fears of isolation head on and risking what little we’ve gotten accustomed to as a security blanket. The longer it goes on, the scarier the monster is to face.

But That Isn’t The End of Hope

It’s never too late to reach out and combat these feelings of isolation. The important thing is to do act with compassion towards yourself and a healthy, stubborn ambition. Deciding that you are willing to approach the proverbial monster in the shadows is a major step that should never be underestimated or underappreciated. Don’t beat yourself up over the time it will take to make significant improvements. Remember that it is generally thought that the amount of time that you endured the trauma AND avoided working on it…will be close to the amount of time it takes to work on it as well. This isn’t meant to frighten or intimidate, but rather as merely a reminder to be kind to yourself through your process.

One of the biggest steps after this is in this is gaining a high level of self awareness of these things. Make a safe space to allow yourself time to process whatever traumatic events or memories that have come up in your life. This may be the office of a trained psychologist or simply a quiet, isolated space to freely process your emotions without fear of being approached. To learn that while masks are important to everyone in daily life, to limit their use to healthy amounts rather than a base state of being in public.

Search for a few friends who have the right amount of damage and awareness. That’s not to say ONLY have friends that have experienced similar trauma, because that defeats the purpose because the goal is to find ways not to live within your trauma. However, there is a type of validation that comes with being able to casually talk about your life that most people take for granted. Sometimes…we really DO just need to talk with someone who has been where we were and can see the world through a familiar lens. To not feel so alone in the world does wonders for one’s state of being. Find support groups and share stories from those that have been there and, ideally, with those that have worked past at least some of it.

The hardest steps are always the hardest, but we can do amazing things if we do it together.

My parents wanted me to come and visit and spend more time with them in San Francisco, which was an hour and a half ride by public transit (I don’t drive) each way, plus whatever time I spent with them. I often begged off due to fatigue, or due to pneumonia-like symptoms. See, I say “I feel like I have pneumonia,” which means that I feel many of the same symptoms of having pneumonia without having been to the doctor to get diagnosed. Having had as many cases as I’ve had, I can usually tell when it’s severe enough to warrant seeing the doctor, especially considering that seeing the doctor meant I had to work a half-day instead of a full day.

One time, when I was over at my parents’, they had left their email open. I made the mistake of reading it, and they declared that they believed me a hypochondriac in it. This was before my diagnosis of fibro, but while I was definitely expressing symptoms of it. Unfortunately, many of those symptoms resembled my mom’s, and she has MS. So they perceived me as wanting attention by pretending to express the same symptoms she had. This was not the case.

The world believes that what’s wrong with me is all in my head. My physician, blessedly, is not one of them. But even my first application for SSI included the words “it’s all in his head.” I even had a doctor in the ER tell me that I “had a lot of fake problems.”

I’m here to tell you an important message. It actually is all in my head, in that fibro is overactive nerves that are messing you up for no good reason. There’s no way to see it. There’s no way to prove it. But that doesn’t, in ANY WAY, make it any less real or valid. I am still in pain. I still have fatigue, and lose my apetite, and have hot spots where it is agony to be touched. I still find it exhausting to spend time around people, or loud noises, or a lot of strong smells. I still have the taste of food altered by my illness, and have floaters in my vision that sometimes render me unable to see much of anything, and get fairly awful tinnitus periodically, and sometimes I sleep for days at a time basically, getting up to eat and go to the bathroom and nothing else. I still forget words and use the wrong words for common concepts.

My illness is real. It is invisible. But it is real. And it doesn’t matter what other people think of it, whether other people believe me or not. It’s real. Medicines designed to treat these illnesses work and help to alleviate my symptoms. Medicines designed to treat some of the symptoms (like pain medicine, which has a history of not being effective for most fibro-related pain, and is only for breakthrough pain) are not effective, as expected. Altering my diet some, attempting to do more stretching and exercises that are shown to be effective help alleviate my symptoms. My illness is real.

I never told my parents that I read that they called me a hypochondriac. It wouldn’t be helpful and would just lead to us fighting about it. But I can, in all honesty, safely say that my illness is real.

It’s a tough fight to go through, having an invisible illness and facing a world that doesn’t believe in it. I am not the kind of person for whom support groups are effective. I use mantras to remind myself that I have this illness, but that it does not define me. That my limitations are real, but that I can continue to live a fulfilling life nonetheless. I remind myself that the opinions of others do not define me either, and that it doesn’t matter what anyone else says, my illness /is real/. Never let someone else tell you what you’re experiencing when it comes to this sort of thing. It’s hard, but you have to stick to your guns and know that it’s your life, your experience, and it’s real.

And anyone who tries to deny it? Examine whether they are necessary in your life or not. Give them a good, hard look. Because chances are? They aren’t. And you will be much better off without them.

Always remember: Just because it’s in your head doesn’t make it fake or untrue. It is real.

Anthropomorphizing My Mental Illness

No, I don’t literally hear voices arguing in my head. But giving them a life of their own has helped me to organize it in my own mind. When my depression and anxiety disorders decide it’s time to peak, it feels like I’m being ganged up on…even if it’s all me. This is because even though I know all the thoughts come from within my own mind, there’s a small part of me that fights every time to remind the of myself that I don’t normally think that way or that what thoughts I’m having are irrational.

These could be fairly obvious examples of irrational thought such as when my anxiety brain decides that checking my email is terrifying. “Seriously? What is the worst thing that I could read? It’s not like we’re being harassed and have to actually be concerned. My life is not in danger from email, I promise you”. But sometimes it’s more subtle and you only realize you drifted into crazy land after it’s too late. It has gone from wondering why the boyfriend didn’t respond to a text, to wondering if he’s upset with me, to wondering what I did, and somehow… Within minutes… My head is giving me insane concerns that our relationship has been a lie from the beginning and I have been manipulated for sex because that’s the only reason he’d keep talking to me and he’s obviously sleeping with a bunch of other people and that’s why he’s not called back because he’s tired of me! I wish I could properly explain just how far into crazy land this line of thinking is for my relationship with him. I didn’t just wander into crazy land, I staged a hostile take over of it’s capitol and declared myself its evil dictator. By the time it gets to that point, I’ve started to catch my brain rewriting past interactions to be negative and manipulative. And seriously? He’s one of the most genuinely compassionate people I know and can’t lie to save his life.

How Did I Get There?

It’s easier to understand if you think of the anxiety and depression brain as having the same behavior of the meanest girls you knew in highschool. You know, just like in the movie Mean Girls. They feel their purpose is to rip you down.

Anxiety tells you how everything is going to crash down in the worst way possible while Depression is there to tell you exactly how it’s all due to your gross ineptitude. They don’t give up easy, they’ve got a lot of practice, they have learned to play well off each other, and they’re unrelentlessly cruel.

Let me play out an extended version of the example I gave above of inner dialog.

I wonder if everything is okay, I normally hear back by now. I mean, all was good last time we spoke. Could be busy at work or left the phone at home.

I hope he’s not mad at me.

No, I mean, why? He didn’t say anything about being mad at me.

Probably trying to be nice and not hurt my feelings because he knows I’ve been through a lot right now.

I have been going through a lot lately… I’ve probably been really annoying to him.

Maybe he IS trying to distance himself a bit. I’m too much for me to deal with, I can only imagine how much it is for him.

It’s not like it’s his job to save me anyway. I’m asking too much for him to be there for me.

It’s only his right to be frustrated with me at this point.

How could he put up with all of me for this long?

Maybe he just doesn’t realize how bad I am, because I can be so terrible I don’t even want to be around me.

No, he’s seen me break a few times now. He knows.

Maybe that’s it then, he didn’t realize it, now he knows, so now he’s trying to find an easy out!

Can’t really blame him for it. I guess I hid it in the beginning. Really wasn’t fair.

But he has told me before that it’s not fair for me to deal with this on my own and that he wants to be here for me.

That’s easy to say though. Nobody actually means when they say that.

I do, but don’t hold anyone else to that. You’ll just be disappointed when you need them and they can’t be there.

He probably just said that because it calmed you down.

If you noticed, he wanted to have sex later. It was probably just to get you to shut up long enough to get laid.

That’s probably the real reason he stays around.

He’s probably really practiced at talking pretty and getting women convinced he cares for them.

I was probably just lured in and never saw it coming.

Oh gods, I’ve got myself into such a mess, I should back off too.

Oh, he messaged back. He says he just left his phone and said “love you beautiful”.

Yeah, probably just to get you to not think about it.

He’s probably just giving automatic responses. It’s an easily expected thing to do.

That’s how he lured you in the first place.

Yeah, I need to back away. It’ll only end in heartbreak.

I should have known better to think someone could be that sweet and actually love me.

And it continues to go on like this. Some days I can catch it early and quiet it. Some days it runs like a child with scissors. Now, to counter what Anxiety and Depression have to say…I totally made the first moves and it was equal in pursuing. We’re often talking about loads of really amazing conversation and while sex is important and fun…I am treated far from a booty call when convenient. That’s as much for the readers benefit as it is a reminder to myself when I read over this later. That line of thinking is beyond absurd. But, there it sits, straight from the Dictator of Crazy Land.

Where Do We Go From Here?

For me, it’s a mix of putting into effect cognitive coping skills and, recently, medication.

I have learned, with the help of an incredible therapist in my past, to help notice the difference between a bad situation and Depression and Anxiety logic. That’s the first step. As soon as I recognize it as bullshit, I call it out for what it is. This could be to myself, this could be to my friends, this could be to the person the bullshit is surrounding for the moment. I have, on occasion, gone to the boyfriend and said “I’ve got bad Depression and Anxiety brain right now and it’s telling lies about you. Can you just hold me and tell me it’s okay?” And, the fantastic man he is, goes above and beyond in somehow just the way that it makes it better.

But it still lays on my shoulders to recognize it and communicate. I’ve set up with a few friends warning signs I forget or have too much apathy to hide when it gets bad and what to do. All of it, however, is me looking out for myself in the end. Making sure that I’m basically hiding coping tools in the trust and love of those close to me. Honestly, it was due to those fail safes that I ended up at the doctor deciding to go on medication.

It would be hard enough if that kind of continual abuse was coming from bullies. We often can’t deal with such a situation on our own. It should be considered no different just because the bully is in your own mind, is okay to call in reinforcements.

I just had my second major surgery. It went well and though it was only a week ago, I can tell it’s healing pretty good thus far. The surgery prep was less than phenomenal, though it wasn’t the fault of a bad nursing staff. They dug around in various spots on my arms eight times before calling someone from the midline team.

I’ll state it again, the staff was fantastic. They were all very skilled nurses, and one was even my anesthesiologist that is familiar with EDS. The problem was completely with my veins that would blow or collapse on them. I can’t, and won’t, blame any of them because of my zebra veins causing problems. They were all kind, patient with my anxiety and slowly rising stress, and as gentle as trying to get the necessary IV allowed them to be. They even gave me a nice Ativan to help me calm down half way through the attempts and gave me warm blankets for my arms that were icy because of the Raynauds. Despite that, I will admit that I was struggling to hold back tears after one of the last attempts on my wrists. My surgeon happened to meander by at that time and asked how I was holding up. I looked at the anesthesiologist and back to my surgeon, and asked the both of them…

Can I Please, PLEASE Stop Being A Zebra Now?

My anesthesiologist responded with much appreciated humor and my surgeon responded with sincerity and empathy that, while I adore him, was unexpected. Though I was stressed so I don’t remember exactly, but it was something along the lines that while I can’t just stop being a zebra, how amazingly strong I must be to be able to handle being a zebra in the first place…only…I promise he was much more eloquent than that.

My pre-op nurses when I apologized for being a nervous wreck THANKED ME for my patience and cooperation and strength with this. I was told similar from my Primary Care Doctor, my Gynecologist, even my Acupuncturist. Not to mention friends that seem to never miss an opportunity to tell me. Even strangers that are visitors to where I work…”Wow, you’ve got an amazing attitude! You’re so strong!”

…But I Don’t Feel Strong

Especially not lying in that hospital bed, in a paper dress, arms with bumps from blown veins wrapped in warm towels, failing to hold back tears because I’m so broken I can’t even get an IV. Knowing I’d be going home to be confined to needing help with something as basic as taking a shower for about a month at least. Knowing I can’t be trusted to use a knee scooter the 200 yards to my work without supervision for at least a month. Yep, there’s the broken girl crying in the pre-op room.

I’m in pain all the time, and sometimes I break down because I just am completely overwhelmed with the fact I rarely have a day where something doesn’t hurt. I break down because I’ve been mobility impaired in some significant way with my ankles for over a year now. I break down because I’ve been breaking down more often than what I consider normal. Here I am, on the verge of breaking down in the hospital before surgery and they’re telling me how strong I am? And every time, I immediately think there’s something wrong with each person that sees me as having strength through any of this.

But Strength Isn’t About Never Breaking

This is something that I’ve still not learned well and will have to work on accepting. But strength in this situation is about choosing to push forward. I could have very well stopped after the fourth IV attempt, or even the second, and walked out. I could say “fuck it” to sticking to a strict diet that keeps me from going out to most places or eating without concern when friends cook. I could say I’m done seeing doctors for a while because it causes too much pain, and grief, and hopelessness.

Though I personally don’t see it as a choice, I persevere through each challenge the best I can. That after each time I break, I try and see what I can do next. If I stop being able to sit at my desk and paint, I wonder about ways to make it safe for me to do it in bed or on the couch. I am always on the look out for new things to try with my diet that will be replacements for foods I desperately miss. I’m even learning to let trusted friends know when I am truly not alright and should be checked in on occasionally. And though I still don’t see this strength most days, I have plenty that will remind me that while it feels inconsequential while elbow deep it in, the sheer fact of pushing forward in the face of adversity is where strength lies.

You gain strength, courage, and confidence by every experience in which you really stop to look fear in the face. You are able to say to yourself, ‘I lived through this horror. ~Eleanor Roosevelt

I’ve had this conversation, as well as overheard this conversation, recently…

“No, seriously. It’s like you’re always talking about it. Your rings, your surgery, your doctors, your diagnosis, your pain. On and on and on and on to everyone!” “She doesn’t do anything but tell people all about her medical issues like she’s special or something”

Honestly? I do talk about it a lot. I swear, I’m not greeting people with “Hi, nice to meet you I’m a zebra want to hear about it?” But when someone asks about my rings or why I’m in an air cast, I end up in discussions. They go one of two ways. People say “Oh, I’m sorry” and change the subject, or they start asking a bunch of questions. If it’s the later, I try to answer most questions.

Why talk about such personal medical matters?

A lot of people, including many of my family members, feel that medical information is very personal and should be hidden away like Harry Potter…let it out just enough to survive and then stuff them back it the closet under the stairs. There is some wisdom in being discrete. Potential employers can search you and have the risk of being turned down for having chronic illness issues. And not all of your friends have the stomach to hear illustrative descriptions of how you’re bleeding from your uterus an abnormal amount or the noises of putting a subluxed joint back into place.

I, however, think it’s all kind of fascinating. Though I can’t say I enjoy having to deal with it, I still enjoy learning about just what’s going on. I also love sharing things I’ve learned. So for me, it’s all about sharing new information with people that are interested.

Sounds like you’re just liking the attention of being rare

I can see how it can look like that from the outside. There are certainly moments when it’s really personally gratifying. However, those moments are probably different from what you might expect. One might think, I live for the moments that are full of emotion and sympathy, and being told how brave I am. Though I had a recent post that expressed appreciation at such a statement, those generally are more uncomfortable than encouraging. That’s another topic entirely though that I may go into at a later date.

So what about sharing DOES makes it personally gratifying? When I end up talking to someone that has similar issues and understands. Those rare moments where I meet someone that comments on my ring splints, and then asks if they’re medical because they have EDS and were looking into them. The few moments where you don’t quite feel like the only zebra in a herd of horses. It’s that connection to someone walking a similar road.

That can’t be the main reason though…right?

Well of course not! The main reason, as I’ve stated above, is that I love sharing things I’ve learned. Most people have not heard of anything on the hypermobile spectrum disorder list. They’ve also not heard about the really cool advancements of polyester ligaments and silver ring splints. These are all the kind of things that I wish with all my heart someone would have told me, or explained to a family member, years ago!

In just the short time I’ve had my ring splints (about 2 months at this point) I’ve been able to give a few lovely people hope of returning to things they’ve loved but had to put aside because of failing fingers. If you’ve never had that type of despair, it’s hard to explain what it means to have that particular type of hope.

And less on the zebra side of it, I feel we need to step out of the idea that mental illness such as depression and anxiety are embarrassing to have or a personal failing. That can’t happen unless we take it out of the shoebox we’ve stuffed it in. It’s never going to get the attention it needs to be helped if we keep stuffing it away like that and shoving it in the dustiest part of the closet like pictures of the ex you wish you forgot. And I think discussion is a good step in that direction because it at least makes us acknowledge that shoe box and reminds us that we’re not the only one with those hidden things in our minds.

But why all the time?

If I’m completely honest? Because that’s what occupies most of my life right now. I’ve been dealing with loose and painful joints since I was a tiny, little girl. Only in the past few years have I been to doctors that were able to help with various issues…but that means changing the whole way I view the world. You’ve got to accept that you have a serious condition as well as find a whole new way to approach every day life because of it. Recent surgery has put me at the mercy of others as I was unable to be self-reliant in the most basic of tasks while I recovered. I’ve got ring splints that I need to wear every day if I want to be productive. It makes you hyper-aware of your own issues to the point where things that aren’t absolutely necessary your brain just shuts out.

So while I may talk about things like my recent accomplishment of learning how to make pine needle baskets, or an amazing dinner I had with friends. I’ve no choice but to admit that the most pressing thoughts are all surrounding my mental and physical health right now because I’ve got so much going on that deals with it. From waking to sleeping, there’s little that I do in between that doesn’t have to have it in the forefront. Showering, nourishment, walking, even sex becomes complicated! So it should come as no surprise how much it’s in my conversation as well.

Which all goes back to knowing there’s other out there that are feeling similar struggles. And if by sharing any bit of my story…I can help them to feel less alone, a little bit braver, more vocal when they need it, understand a loved one who’s going through it, be reminded to offer a kind hand to another struggling…then it’s totally worth it.