Over the past year, an incredible bit of collaboration has been brewing. On the surface, it presents as the culmination of being able to release a new EDS ring splint. This is an exciting enough announcement, but allow me to take you behind the scenes of what went into the development of this splint. It’s going to be a long one, so if you just want to jump straight to Lumecluster to order one – I’ll only be a little disappointed. You can also jump to the section where I give my experience with the Celestial Eye EDS Splint. I do, however, hope that you’ll stay and be inspired.

It was a few years ago when I first reached out to Melissa Ng, the glorious artisan behind Lumecluster. I had followed them for a little while as their fantasy armor would float across my timeline. During my short foray into TikTok, I was excited to see them pop up with a video featuring their Descendants of the Dragon Armor Rings. I loved the design and the story they wrote… but… I had a ponderance. So on a whim, I replied to the post. I figured no harm in asking; worst case scenario was that it would be lost in the comments.

My question? “Hey, does your ring armor allow your fingers to bend backwards?” As if that was a totally normal and reasonable ask. Hahaha

Thrilled to see that they replied and thankful they weren’t too discombobulated by it. We connected and started discussing how Ehlers-Danlos causes significant impacts on my hands. Videos to demonstrate significant hypermobility in my hands. How their current designs would probably not suit my particular splint requirements. Consideration of making a design specifically for EDS needs. And then?

We both kind of fell away from social media.

It was the time of the sleeping phoenix.

At least that’s what I’ve come to see it as. I was struggling with new braces, new ring splints, new surgeries, new specialists to add to my doctor team, post covid struggles, worsening of mast cell symptoms, anaphylaxis from prednisone, learning I’ve had asthma that’s been ignored since childhood, interpersonal relationship problems… I fell away from posting on Anxiety Zebra. Much of my artwork had paused and I was facing the very real possibility that the EDS could take it away for good. Work felt overwhelming and like a burden for the first time since I started there 19 years ago. I was even falling away from some of my closest connections.

We call it burnout.

It’s become such a pop-psychology term. It’s lost a lot significance when it comes up. It has become a synonym for simply needing to take a quick vacation to be able to bounce back. This was akin to scraping a recently washed and polished bowl and hoping there’s still somehow an essence of cake frosting left to sustain yourself on. To top it off, the frosting originally in the bowl wasn’t even the good kind in the first place. It was artificial banana that wasn’t blended enough so it’s all gritty and unpleasant.

Taking time to reevaluate my approach on how I needed to move forward living with the hand I’ve been dealt, I conversely tried to appear the same as the me that was younger – before I knew I had EDS. I had always lived by pushing through everything at full speed until there was a catastrophic crash… and that wasn’t serving me anymore. However, at the time that was all I knew. I didn’t know how to move forward going slow and being mindful. It was a complete change of perception that had its tendrils in everything. Even with having loved ones that were incredibly supportive, it was a difficult time where progress followed the one step forward and two steps back vibe.

What helped?

Diving into my indigenous heritage. Learning to use rotary tools again at a pace that honored the limits my body was trying to set. Taking some time to be out in nature and appreciating the bees and wasps. Learning, despite my conscious objections to it, how to embrace patience. Or as my brother says; to lower my expectations. Not because I was worthy of less, but because I deserved to not push myself into pain and to stop seeing production as a reward for it.

In that time, I was too exhausted to heavily mask. In an unexpected twist (unexpected to me and only me by the way) it was through that, I ended up making deeper connections with some of the indigenous people I know. They helped me see things from a more decolonized perspective and it started to make that transition time click together.

And then… A Spark

I saw Lumecluster post for the first time in years about coming back. At that point, it was simply the normal excitement of seeing a favorite artist coming out with a new thing. Curiosity and support. So when their first post in several years came out? Of course I signed up for their newsletter! As I read it… it hit like a gut punch. Not because it was disappointing, but because it was like expecting to be shown a glimpse into the behind the scenes. Instead? It was raw and seemingly unfiltered. All the wounds from the battle of struggling to survive were put into words, and I was realizing that they looked all too familiar. It wasn’t a blow from an enemy. It landed as a hard reminder to not retreat alone and that we can limp back from the battlefield together.

At the end of that post, was a request. “What part of yourself have you been missing lately and how can you start bringing it back? Feel free to reply to the newsletter or drop a comment below” Despite the mountain of complicated feelings that I was struggling with in my own life, I wrote a reply. I don’t recall what I responded with and I’ve a personal habit of not going back to reread things I’ve written unless it’s a technical issue. What I do remember is a metaphorical stretching out of a hand from under the cocoon of blankets I’ve wrapped up in despite feeling like all the bandages and scars should stay hidden.

It wasn’t because I felt like I needed to be brave. I wasn’t even expecting them to remember me from what felt like such a brief interaction several years prior. It was simply to reach out and say that I see you. That you’ve reminded me that I’m not alone in feeling this way; neither are you.

An acceptance that it was time to rise up from the ashes if you will.

From a Spark to a Rustling of Flame

Lumecluster responded and we reconnected on the topic of potentially designing ring splints. It quickly blossomed into more than that. I wasn’t talking to the brand, I was talking to Melissa. I brought up concerns about my limitations and was met with understanding and flexibility. They shared concerns about the process and functionality I needed, and I met them with some humor and explanations with video. An impressive amount of voice messages, emails, and short messages to further sort out details and considerations as they came up during the design process. My partner got involved and created a version of my prescription splints out of coat hanger wire. They were sent off so Melissa could glean a better understanding.

We also shared our experiences. Conversations about life as part of marginalized communities. Tattoo session sharing. Critique and appreciation of different authors and what they meant to our perception of the culture we’re surrounded by. The pressure we feel as artists. The struggle we’ve felt as people born in a feminine presenting body. How cats are little house goblins. The complicated nature of rediscovering our identity.

We’re so very different, and yet we formed a friendship that has become something treasured. Two artists coming together to create something incredible. Two people willing to see each other for who they are and embrace it. It became so much more than just a cool ring splint project, it was empathy, compassion, and healing cast in metal.

The Trials of Prototypes

I don’t want to give the wrong impression. This wasn’t just a heart-felt experience, it was a hell of a lot of work as well. Trying a new ring splint, even when it is perfectly fitted, makes my skin crawl and my bones itch. I’ve discussed before how it takes me a few months to adapt to the more official ones I have. I had to not only put the prototypes through trials, but also sort what was a legitimate design issue and what was me needing to grit my teeth and wait for this new contraption to feel less alien.

I wasn’t alone in this journey though. My partner also tested out one of the prototypes in an effort to better evaluate their comfort as someone without extreme hypermobility in their hands. Though designed with intention as a splint, the ring is going out as the crowning piece within the Mending Collection and is available to everyone. He gave invaluable input to ensure it would serve as simply fashion.

My occupational therapist, Mickey Calhoun OTR/L at Island Hand and Upper Body Rehabilitation, looked at videos, asked questions, and gave them a heavy in-person inspection. He had worked with me through the harrowing experience of having both my ulnar nerves go under the knife as well as experience with other Ehlers-Danlos patients. I trusted his feedback from a medical standpoint to look at the bigger picture.

Multiple friends were willing to try them on and give a detailed assessment of how they felt. From my tattoo artist Nikki Canady to friends that also face the challenges of Ehlers-Danlos… so many people were willing to be a part of the development process to ensure Melissa had well rounded feedback.

I put the prototypes through just about every trial I could think of. I made pine needle baskets and carved shells with a rotary tool. I sorted beads and organized paperwork. I typed articles like this and went to work. I cleaned and took apart a vacuum to fix it. I put on my body braid wrap and brushed my hair.

To make matters ever so slightly more complicated? I came to accept that it was time to work with a somatic therapist with a focus on sex therapy. She has been helping me shed some of the generational and societal expectations that have bogged me down and caused some of the suffocation of my inner self. However, imagine trying to adapt and find comfort in a brand new style of splint that’s necessary to function while you’re going into therapy that specifically brings attention to the sensations of the body. At times, it was as much fun as exfoliating a sunburn with sandpaper. And yet? It was motivated by joy and love rather than obligation.

This was a collaboration that had the potential to touch so many people which made even the challenging aspects seem significant.

Turns out, it was the final push;. No longer a limping off the battlefield licking wounds. This collaboration was a trust fall off of the cliff knowing that I’ve been ready to take flight for a while now. Everything started to fall together into this beautiful chaos of creation and rebirth. It was feeling the rage, shame, grief, pain, and insecurity right along with the euphoria. It was being ready for the sleeping embers to turn back into wings of lava to take flight on dreams thought to be forgotten – even if the approach to those dreams has to be through an adapted path.

The Celestial Eye and the Phoenix

I am beyond ecstatic to show off what has come from trusting those wings of inspiration. Melissa has created the Mending Collection. Featured in all its glory, is the Celestial Eye EDS Ring Splint accompanied by the striking collection of stacking rings. There will be several patina options and we can say with confidence that they’ve been tried and tested to be both comfortable and functional!

From the side, it resembles a Phoenix feather and from the front, an open eye. It’s a reminder to always elevate our understanding and empathy by keeping our eyes, hearts, and minds open.

This collection is for people who have been fighters all their life.

~Melissa Ng of Lumecluster

These rings aren’t just for those like me. They’re not just for people struggling with hands that might as well be put together with dry rotted rubber bands. Not just for people who feel they’re put together so badly that their Creator got carpel tunnel when they were being made and forgot some parts. They’re for anyone who needs a reminder of what their light looks like. Anyone who needs a call back to that divine part of themselves that has felt smothered, bruised, and exhausted. For all of us that have a need to learn to fight through Mending and Healing rather than sheer force.

Let’s Talk Functionality Though…

As excited as I am, I did want to give a functionality run down during my experiments with them in relation to my level of hypermobility. For reference, my hands are profoundly impacted by EDS. There’s past entries for the first time I got ring splints as well as when I got the second set to give a bit more insight if you’re wanting a deeper dive. Most of my finger joints have very little stability and holding a pen is enough to dislocate the MCP joint of my thumb. For someone that likes to do things like work with power tools? Not the best combination.

Could this design hold up to a heavy duty daily use as a splint?

With heavy duty work, some of my prescribed splints end up kind of clam shell closing due to the pressure of the joint naturally experiencing significant hyperextention. What I’ve found in the Celestial Eye design is that the nature of the multiple bands prevents the outer most bands from closing past a certain point and therefor preventing a greater level of hyperextention during power tool gripping.

While this was a point of frustration because I’m used to the ones from Silver Ring Splint Company having a greater degree of give so I can have “bad finger” positions… this isn’t actually a good thing. Extra give allows hyperextention and risks damage. I’ve accepted that the Celestial Eye is better for my mobility range. I just need to whinge about it first.

I do need to occasionally adjust them back into position if I’m doing work where they’re under a lot of pressure as they try to keep my knuckles from bending backwards. And they do slip a bit if I’m doing anything that takes a lot of opening and closing of my hand… but less so than the more official style. It’s just the nature of having a ring in the bend of your finger.

With that aspect sorted, I also had some major concerns about the fact that they were adjustable. One of the reasons I have always recommended going with the official channels and sizing was that you’d have splints perfectly suited to your ring size. Because they’re solid, I’ve also found them to not be at risk from stretching. I’ve had friends with hands less severely impacted that had luck with some other designs by Etsy artists, but my degree of wonk made them mostly useless.

How did the new Celestial Eye compare? Did they hold up?

Better than my expectations and with a surprise benefit! The standard swan neck ring splints can be adjusted within a half size by opening or closing the ring like a clam shell. I was used to this feature and utilized it often.

But having 3 points of more refined adjustment!? I can now more acutely adjust for swelling in my joints through the day. I can both bend the top band out AND tighten it! I didn’t consider what a shift in comfort this would turn out to be.

I found myself making small adjustments on the regular and wishing that I had the same ability with my other splints. Though it was easy for me to refine the fit, this may start as a slightly intimidating challenge for those without jewelry experience. We did try this out with some friends, but most of those closest to me are, shockingly, also involved in the arts. It seemed quite intuitive to all of us, but in the sake of transparency I’d not claim it would be easy for everyone.

The last consideration is the size of these rings. If you somehow managed to overlook this aspect until this point… in order to make the design fit over a functional knuckle? They had to have some height to them. Did the size of the ring make them clunky and uncomfortable? Any problems with functioning?

Shockingly? This was less of an issue than I had expected them to be. I’ve been working on a detailed cross stitch and they’ve never got in the way. (And btw, the strings never got caught in the adjustable bits either!) Occasionally, there’s a small handled mug that I give an annoyed side eye to as my fingers cause a clink. The second iteration of the Celestial Eye was a slightly lower profile and suited my hands even better!

We did find that my partner and OT did better with the higher profile. Hands are complex little things with such incredible variation from person to person. My fingers are shorter so they need less clearance space for the knuckle bend. Others may find they prefer the higher clearance. All and all, it’s a relatively minor consideration unless you’re planning on doing some heavy work while wearing them.

They do make it a bit annoying to put your hands in the pockets of clothing designed for women… but isn’t that true of unadorned hands as well? Harder to slide under the stove, fridge, or really any space the cat rushes to try and bat it under if they fall off too! I’ll take it!

In the end, I feel confident that we’ve managed to come together and make something that’s beautiful and functional. No hyperextention. Comfortable for EDS hands as well as folks wearing it on just as a fashion piece. Lack of any pinching at adjustment points. I’m not sure they could be improved unless you’ve got a magic wand stashed somewhere. I’ve loved my previous ring splints; they were a way to add some style to mobility aids. These new creations add a whole new level of fantasy flare that I thought had become out of reach because of my needs.

All We Are Is Light Made Whole

So then we come full circle. Back to the idea of the Mending Collection being more than pretty rings, and part of something bigger. A story of coming back to ourselves as we were always meant to be this whole time. I’d say like a moth coming out of a cocoon, but I feel more like I’ve come out as a wasp. Trust me, sounds bad ass, until you realize they’re all generally low key still trying to survive in a world full of things trying to eat them.

With everything going on in our lives and current events, it can be difficult to pierce the darkness. We wrap up in it and use it like a pillow fort. Hope can seem dangerous or pointless. Stepping into ourselves and the willingness to reach for our dreams can feel self-destructive. Part of this is because we know deep down that we’re not going to step out from the comfort and warmth into who we used to be and a time we felt safer. Not only do we have to emerge from where we’ve hidden, we’ve got to rebuild into something new? Sounds down right rude.

I carry two little pocket pieces from a dearly departed friend to remind me that even in the darkness there’s still light to guide us if we’re willing to look for it. It’s more than darkness before the dawn. It’s embracing all we’ve experienced and all we are, seeing the light that’s always been there. Even when we’ve thought it extinguished.

Even the stars themselves are born from the fathomless darkness. Celestial bodies burning bright to let us know we’re not alone. Matter is not created or destroyed. It just changes forms. So maybe, just maybe, that same light that gives new life to your sleeping phoenix is just left over stars stuff we’re birthed from. We may have to rebuild and rediscover and readjust and all sorts of anxiety inducing concepts that lay the groundwork for growth. But the most beautiful part of this? We get to write our own story and with a consciousness we may have been lacking before.

I hope that you’ll wander over to Lumecluster to read Melissa’s blog and the journey from their perspective before you step away. Maybe pick up a ring for yourself along the way and rekindle something you thought lost. Maybe carve out a unique way back or forward to your dreams. Maybe even a bit of both. Whatever you do? I’m glad you’re here for the ride.

Disability and admitting that one is disabled should not be a social faux pas. Everyone is fully able-bodied temporarily. Whether it ends in a sudden accident or the slow creep of life, we’ll all face it in some way. Many of the more….let’s call them inspirational for the sake of conversation…terms come from a place of discomfort. You may think that this is the whole point! We don’t want disabled people to feel bad, so we use other phrases! However, that’s not what I’m meaning. It can get a little complicated, so let’s try and break it down a bit.

Take this as referring to all the phrases like “Differently Abled” and “Disability is My Superpower” and all statements that are similar. On the surface, it seems to be very much a positive thing. The statement even has a more positive birthing when it came about in the 1980’s from festival workers. From people wanting to be seen as human, equal, and worthy of taking up space. For a long time, people born with deformities or significant disability had few options. Often those options included freak shows or an institution. The phrase was originated to be used to help illustrate that just because they look different or have different physical needs, it doesn’t mean they’re less. Just because someone needs a wheelchair or a walker doesn’t mean they can’t enjoy the same things you do. Now, I want you to really sit with this for a moment or two. These phrases came about because we had to remind the rest of the population that people born differently were still, in fact, people…..

Take an honest amount of time to think about the implications. It may sound harsh against such positive sounding intentions, but look at it from a step back. The phrase came about to remind able-bodied people that people with a disability…are still people. To be quite frank, there’s still an uphill battle for those of us facing extra need. Just walk around with a cane and you’ll hear all sorts of reminders. With enough time, you’ll hear plenty of unwelcome opinions that come out of left field. Persuasions that if you use your aids too long you might never be normal again. Suggestions of trying yoga or some new essential oil from a popular MLM scheme. Concerns if you look young that you’re possibly faking your illness for attention. The simple act of using a mobility aid is approached by way too many people as something to police. I dream of a time when the most common discussion about one’s mobility aid is to compliment one that’s been decked out to be a cool personal accessory or tips for getting maximum benefit.

We’re in a culture that want’s to use “differently abled” to remind others that disabled people are human. Are we accomplishing this while an overwhelming number of people will jump at the chance to try and convince aforementioned disabled person that they should maybe just try harder to appear “normal”? We don’t need a shift in wording, we need a shift of culture. A shift in understanding. A shift in acceptance

Acknowledging that some of us have to have accommodations is just a fact of life. That being said? It’s still a major consideration and deserves to be thought of as such. I can still travel, but I have to pack medical bags, make sure my meds are all in order for long and short term, consider what mobility aids I need, work out how to travel with all my ring splints, plans for meals way in advance, look at communication availability of the location, and discuss with my partner or travel mates what to do in case of emergency. Spontaneous trips can be exciting, but they can also carry more risk than average for someone like me. Does that mean I never do such things? Pfft…no. But it does mean I’m more keenly aware of what I’m risking as consequences so it happens less often.

Whether work or pleasure, so many things have to be taken into planning of day to day life. That’s fine, but the more feel-good phrases of “differently abled” carry a hidden implication of small accommodations make someone more “normal”. A way of gently side-stepping responsibility of those around you to consider what may assist in your ability to perform and/or enjoy what is happening. A congratulations of how much you’re able to be like “one of us”….and now we don’t have to worry about it because you’ve got this! A permission slip to pass the buck. Even to the degree that when the impact of chronic illness/disability becomes overwhelming, it opens the door for a pat on the back and token phrases of “But you’re so brave!” to follow up. This slips into another facet of this impact….

You’re Such An Inspiration!

Sideways encouragement like being perceived as brave or strong…doesn’t hit how one might assume. Imma hold your hand when I say this….telling us that you don’t know how you’d survive if you had to live our lives? It likely doesn’t make the subject of your “praise” feel proud or renew their ambition. Many of us struggle to keep going and there’s a constantly growing number that have given up. It could be the lack of support, access to proper medical assistance, or simply the reality of what someone’s condition takes from them. What it comes down to? It doesn’t matter the specific reason because we’re not here to judge someone for how they feel in the moment.

There is a less obvious burden that comes with such sentiments. We not only have to navigate our own challenges to survive…but we’ve got to serve as an inspiration for you too. I’m fully aware that this is not intentional. Well, at least most of the people I know would never mean it this way. I’ll assume that if you’re reading this, you’re in the same demographic of intended support. Let’s pull the previous concept into this. Statements meant to remind everyone that we’re equally deserving and worthy. Yet what is getting brought to attention? Coping with something that was forced upon us. Not our creativity or business skills. Nor out wit or our grace with children. Our ability to *checks notes* do normal person things. Can you see how maybe, just maybe, that it chips away at our humanity? Even if it’s just a little bit?

This is related, in part, to all the inspirational videos that are popular. I’m sure ya’ll have seen at least one by now.

• Marathon runner was in a car crash and the doctors said they’d never walk again. By SHEER WILL POWER…they got prosthetics and started running marathons again!
• Artist lost their arms, but PERSEVERED to learn how to paint with their mouth!
• Child born with no legs PUSHED THEMSELVES to be a champion swimmer!
• Woman OVERCAME HER ILLNESS to get a degree!

The list goes on and on with possibilities. As we discussed with the term “differently abled”, it sounds positive and encouraging on the surface. It even touches on what was just mentioned and celebrates accomplishments of the individual. Yet…look at the highlighted words. If you can imagine for a moment that you’re faced with a similar disability. What might you feel? Would you be motivated to try harder? Would you simply be happy for the person in the feature?

Or…..

Would you perhaps feel shame that you have not achieved as much? If you see your loved ones posting these videos, would you feel like they acknowledge that you’re enough the way you are? Would you feel pressured to stuff your needs aside in preference of achievements?

It’s where the term “Inspiration P*rn” comes from. It’s a video that makes you feel real good. However it lacks the reality and real life experience. It gives you a glorified perception of what real interaction in that situation looks like. And you never see all the behind the scenes that made it happen.

Some of it is absolutely work that we have to do as disabled people. We have to also willingly step back from feeling such responsibility. That can mean different reactions for every individual. It may mean calling out loved ones on their impact. It could mean deciding that you’re not engaging in such conversations. It may mean brushing off the comments as if they didn’t happen. It could be discussing accommodations at work. It might even look like wearing mobility aids when before they tried not to. It may even look like reevaluating how they approach all their relationships moving forward. It may even look like therapy and choosing to give up on certain dreams for the sake of their health. How it looks will never be the same for all of us.

Unfortunately, this can also come with social consequences for us. Change, even when beneficial, doesn’t happen in a vacuum. It’s a community effort. It doesn’t mean that able-bodied people need to carry the entire burden, and the disability and chronic illness community can’t do it on our own.

What Can We Do to Encourage the Change We Need?

There are people doing the work of helping people step into the mindset in a more constant way like Imani Barbarin that has accounts under Crutches and Spice on social media. They tackle many subjects in a way that I can’t replicate and deeply appreciate. (It was actually a recent post of theirs that reminded me to pull this draft up from the depths of 2020 and finish it). Check out accounts like that.

Look at our own bias that may exist. Are we judging ourselves or our loved ones by a metric that asks them to flay themselves for the sake of reaching goalposts that were set by outsiders or allowing them to walk their own path? Are we expecting others in similar circumstances to ourselves to have the same priorities in the same way or giving them the opportunity to choose what they feel needs the most effort? Are we listening to what our disabled and chronically ill people are feeling and holding space or are we trying to skip to the part where we feel better?

Do we put ourselves on a pedestal because we aren’t in a position where a new building not having a ramp doesn’t impact us? Or do we notice that it doesn’t and make effort to change it where we can? Do we stop when we can access things we need or want to do? Or do we add to the voice of those still disenfranchised? Do we expect everyone else to carry our burden as disabled people? Or do we try to work with those around us? What do we think working together needs to look like? When we celebrate the accomplishments, is “despite everything you deal with” included either out loud or behind a bitten tongue? There’s no perfect way to approach change of this magnitude, but there’s the willingness to try in good faith.

If this hits funny, please remember that this is not about denying accomplishments or walking on eggshells. I’m not saying we SHOULDN’T celebrate the accomplishments of those that are disabled/chronically ill. I’m saying we should try and learn a mindfulness around it. Base it from a place of love and respect and we can learn to shift in a more authentic way towards true acceptance. It’s not going to be an easy path because we live in a culture that presses all of us to judge our worth from our ability to produce. However….

Look at this little hover fly on the flower. We don’t say, “Wow! You do such a good job and thrive even though you’re not eating dead stuff and poop like your cousins!” Nor do we say, “You’re so brave, little fly, pretending to be a bee. Out there doing things like eating and flying.” Such things likely sound absurd. It’s just a hover fly, doing hover fly things. It’s not out here worrying about whether its stripes are good enough. It just wants to fly and eat and mate and keep enjoying its little fly life. When it becomes unable to fly, do you think it will try its best to survive? Or do you think it would benefit from all the other flies telling it to do flower yoga so it can get back to things?

We’re all out here doing the same. I’m not working with my OT to find ways to do my art because I want anyone else to be proud or give me their approval. I do it because it matters to me and feeds my soul. At the time it becomes no longer healthy for me to do so…do you think I need to have my reasoning and choices ripped apart by those not living in this meat suit? Or do you think I just need someone to be there with me and give me the space to grieve? Someone to support my choices, even if they’re sad and inconvenienced by how I’ve chosen to put myself first?

I’m a bug nerd, so I’m not sure that suggesting that if you wouldn’t say *insert questionable phrase here* to this cute little hover fly, maybe don’t suggest it to your disabled/chronically ill loved one. While that works for me? Find something that works for you to help knock down some of what society has written into your world view. I’ve got faith in you to make the steps!

It’s not an easy road or a quick road. But if we all chose to head towards that destination? Even if we all take our own detours and arrive at different times. With joy just as much as frustration and grief. With missteps down the wrong paths alongside sprints towards the goal…we can get there.

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!

What Is Imposter Syndrome?

Simply put, it’s an internal feeling of not being as skilled or accomplished as others perceive you to be. Instead of feeling good about compliments that are given, you feel as if you’re under added pressure to make sure they don’t find out what you feel is the truth. That you’re not good enough.

But how does this fit into chronic illness, and specifically EDS? So many of us go years without a correct diagnosis. We’re told by friends, family, coworkers, and even doctors that our symptoms don’t make sense or are all in out minds. In the case of hEDS (Hypermobile Type EDS), there’s not even a genetic marker. We don’t have any kind of definitive test that you can draw our blood and see a positive result. You have to be lucky enough to find a doctor that is familiar with the symptom check list and the Beighton Scale to be able to evaluate your seemingly odd symptom list. EDS is also a spectrum disorder, meaning that there’s a sliding scale of severity of how one’s body is presenting symptoms. Low level may only have a few problem joints, minimal pain, and just be considered double jointed for most of their life. High level may have chronic dislocation in most joints to the point of requiring mobility aids for most of their life and have severe complications from one of the many common comorbids that can come along for the ride.

All of this combined is a perfect storm of circumstances to foster a constant wondering, even if only in the subconscious, if we really have the disorder or if it is truly something to be concerned about. So many of us have come to accept that we will be brushed off or called hypochondriacs, there is a part (no matter how small) that starts to wonder if it’s true.

When It Bleeds Into Socializing

When I first got diagnosed, I went through the expected roller coaster of being relieved and worried about the future of my health. I joined a handful of support groups to help me understand what I was facing and hoped to pick up a few tips and tricks along the way. While I accomplished my goal, my interactions also served to foster that lurking monster in my subconscious. As I wrote in an earlier post, those with chronic illness are frequently participating in Pain Olympics. I caught myself wondering, with so many people that seem to have it much worse than I do…was I even diagnosed correctly?

There were times that I wanted to comment on a social media thread, but instead decided against it because others that were obviously worse than I am had already commented so who was I to think I had any input of worth.

I was officially diagnosed. It was confirmed by someone who just may be the most experienced podiatry surgeon for EDS in the world. I’m in pain every day, need to wear ring splints to do everyday tasks, sublux or dislocate weekly, have bad reactions to adhesive, have a few common comorbids…and yet I’m sitting here wondering if I’m actually sick enough to be worthy of being heard.

THAT…is Imposter Syndrome.

My Personal Struggles

I work in a place where I interact with visitors on a regular basis. Because of that, my hEDS often comes up because someone asks about my ring splints, a mobility device, or I happen to slip something out of joint. I’m not embarrassed to talk about it. In fact, I really enjoy being able to educate people in this syndrome. If I can help just one person understand better, that will ripple outward. This is especially true when I get to meet someone in the medical field that is interested.

On more than a few occasions, some of those conversations lead to suggestions that I try speaking in a more public forum about my disorder. They always have sound reasons. I’ve self-studied extensively, articulate, have real life experience living with it, and manage to elaborate on the most devastating parts of struggling with EDS while maintaining a positive attitude. I’ve had a lot of practice in my workplace to have learned a lot on how to talk about difficult subjects in such a way that people want to listen and learn without shoving so much fluff and glitter into the talk it dilutes the reality of the subject matter. In response, I smile and thank them…and promptly ignore it.

Why do I ignore it? Easy. Imposter Syndrome. I’m only a middle of the spectrum zebra. Sure, I have a lot of very challenging struggles. But I am not in a wheelchair. I don’t have a feeding tube. I don’t have some of the more fatal forms of EDS. I’ve only had a few surgeries. I can still manage without constant pain medication most days (despite it hurts every day it’s not extreme yet). I’ve only self-studied, I’m not a doctor. I could go on and on with some of the ways that others have it worse than I do. I had used all of those examples, and I wondered “Who in the world am I to think that I could even begin to speak about it?” In simple terms? I didn’t think I was “sick enough” to even consider the idea that I could be of use when talking about EDS.

Why Imposter Syndrome Is Real, But Silly

Though Imposter Syndrome is not officially in the DSM, it is often talked about in everything from the art to the medical communities. While there are some we all will meet along our life journey that seem they’ve got all their ducks in a row and trained to perform with perfect synchronicity…most of us will face feeling this way. Despite whether we’re suffering with a chronic illness or asked to perform an important task, there will be a point in most of our lives where we think to ourselves, “Am I good enough?” It’s a self-check mechanism. It helps to keep us from jumping into absurdly dangerous situations or tasks that are out of our abilities. Left unchecked, this mechanism will also serve to keep us from doing things of which we are more than capable due to the fear being allowed to run free.

I ignored a very important fact that I won’t hesitate to regurgitate on any other occasion. Just because someone has it worse than you, does not invalidate your situation, your pain, or your accomplishments. This goes the same for trying to figure out if you’re “sick enough”. Do you have a diagnosis? Do you struggle with the challenges of your health complications? Does your health complication have a negative effect on your daily life? Guess what….YOU’RE SICK ENOUGH.

When I had shared my personal struggles with Imposter Syndrome and the very concept of speaking about hEDS, I had a number of friends poke their nose into my diatribe to remind me of this.

You do not have to be the absolute worst end of the spectrum to share important knowledge and experience. You do not have to be a specialist for your commentary to be of worth. Being at the lower end of the spectrum of any disorder does not mean your struggles are less valid. It’s true that we don’t need to wrap ourselves in our suffering as one would wrap in a blanket during winter. But acknowledgment and acceptance of this can be an important bit for all of us that walk along the road of chronic illness.

So who knows, maybe I’ll end up speaking in a more formal setting in the future. Maybe I’ll just continue the path that I’m currently trudging. But either way, I will try and keep these facts in my mind to help in times I need to tell that subconscious monster that I am sick enough…and I hope you do the same.

I’ll leave you with this quote from one of my favorite novelists, Neil Gaiman:

Some years ago, I was lucky enough invited to a gathering of great and good people: artists and scientists, writers and discoverers of things. And I felt that at any moment they would realise that I didn’t qualify to be there, among these people who had really done things.

On my second or third night there, I was standing at the back of the hall, while a musical entertainment happened, and I started talking to a very nice, polite, elderly gentleman about several things, including our shared first name*. And then he pointed to the hall of people, and said words to the effect of, “I just look at all these people, and I think, what the heck am I doing here? They’ve made amazing things. I just went where I was sent.”

And I said, “Yes. But you were the first man on the moon. I think that counts for something.”

And I felt a bit better. Because if Neil Armstrong felt like an imposter, maybe everyone did. Maybe there weren’t any grown-ups, only people who had worked hard and also got lucky and were slightly out of their depth, all of us doing the best job we could, which is all we can really hope for.

…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.

When Communication Looks Irregular

As I’ve personally had a recent flare of significant pain, the messages of a few friends have brought to my attention that it can be a bit confusing from the other side. They see me sharing a video on Facebook but not respond to their private message or answer a text. Or knowing that I’ve gone to work yet I’ve not picked up the phone. There is, of course, an explanation and I’ll try my best to illustrate it.

All communication is taxing, but in varying degrees and in different ways. Sometimes, there are also ways to work around some of it and appear better than how we’re actually doing.

Autopilot in People

“Being on autopilot” is a term I’ve used for a long time now in trying to explain how I can work and I seem fine. I’m sure many of have experienced something like it. Instead of remembering a phone number you remember what order you pushed buttons in. You don’t remember a lock number, but find that as soon as you do it, the memory takes over and you punch it in. You can’t give someone directions, but you know how to get to a certain location because you’ve been there so many times. It’s a form of muscle memory, where you do a task to often that you no longer have to think about it…you just do it.

Interacting with people can be very similar, especially in a work situation. People come in, the greeting is always the same. They often ask the same questions I’ve heard for the past 10 years that the answer is automatic. On good days, I’m alert and completely aware and can have a really engaging conversation. On days like recently where there’s significant pain constantly that makes it hard to concentrate? Most visitors feel like I’m aware and alert and having an engaging conversation because of that muscle memory. I don’t have to think about the smile, it comes when I’m there answering a common question because that’s what I’m supposed to be doing. There have been occasions where I feel like I’m half in a dream world because I can feel and hear myself responding but all my conscious mind is doing is wondering what time it is so I can get off my foot or change a dressing and be far away from any light source. Though I’m grateful for the ability, it can be very surreal and distressing in the moment.

I’ve done things like take out the trash and cleaned without realizing it because it was just part of the daily routine that my brain had stored away “this is what needs done”. The hard part is that is that for others watching, it seems like I’m just a tiny bit off because I appear pretty functional, maybe just a bit weird.

Friends Aren’t Autopilot Material

There’s a lot in life that can’t be put on autopilot though. Anyone I’m close to? Those aren’t a dull, everyday interaction. There’s engaging conversation on a wide variety of topics that you need to be a willing participant in. So while I can have what seems like a productive day at work, knowing that a friend is calling can present more of a challenge than I’m able to take on at the moment.

Sounds a bit weird, I know. Friends are the ones that are supposed to be your support network and the ones you can be yourself around. Problem is, on bad days, we’re not even ourselves. I’m not just grumpy or feeling a bit anti-social, I literally cannot give them the attention needed to interact. We had a friend over for dinner recently and there were several occasions where I have no idea what they were saying. It was such a taxing thing, trying to listen, that my brain just kind of shut off and I stared off into space in the middle of the conversation. I couldn’t even focus on words to say aside from being able to mumble “Sorry, pain” and just cuddled in a blanket on the couch. A part of me could see that they were frustrated, but the rest of me couldn’t even figure out words to speak and it just frustrated and upset me more…making everything in my own head feel worse.

When The Streams Cross

This leads into one of the possible reasons we seem to cancel plans last minute. Sometimes, autopilot can seem to take over when we’re on the edge of being not okay, so that when someone asks “Hey, you want to come to the movies with me tonight?” your automatic response is “Sure!”. Not because you’re just agreeable, but because you like to hang out with those close to you and a part of you really does want to go. You’re not thinking in the moment “Oh, but it’s slightly hard for me to think about complicated things and I may get worse over the next hour. I may want to reschedule”, you’re thinking “Awesome! Let’s go!”.

Now, on bad days, they can hit quickly or slowly, but either way, you find yourself unable to complete a task and it takes an inordinate amount of brain power to figure out what to do. Simple tasks become as complicated as doing complex algebra…while drunk…and high…and on a sedative…while dizzy. I have been in tears because I couldn’t understand how to cancel plans with someone. Not because I was scared I was going to upset them, but because I just couldn’t figure it out. Do I call? Where’s their number? Do I text? Can’t…think…words.

Over the years I’ve learned how to cope with this and work through it as best I can, but that took a lot of experience and a truck load of stubborn ambition. Despite that, there’s just days where I can’t people. My brain is so overwhelmed, I can’t have a conversation. It’s just not going to work no matter what I do or what meds I do or don’t take. So by the time I can figure out or recognize that I need to cancel plans, it can be right as someone pulls up to pick me up. It’s not intentional, and I can promise that I hate it more than anyone I’ve had to cancel on.

Like A Ton of Bricks

One of the other reasons that we seem to be unpredictable is that…well…we are! I can be having the best day, fantastic work day, be getting ready to go without a care in the world. Then, I pull my hip or my knee or my ankle putting on my shoe. (Yes, seriously something that basic. I’ve jarred my ankle, slipped my hip, and subluxed my knee putting shoes on) There’s no choice but to cancel. It’s not like I decided to do gymnastics so I intentionally injured myself so I can get out of participating. But the pain has hit and the injury needs attention unless I want to be completely nonfunctional for the rest of the week.

Recently, I’ll be having a decent day and all it takes is stepping on my braced ankle the wrong way and I’m down for the rest of the evening. At this point, I know that either I can still go and be restricted and miserable and just want to go home the whole time, or I can cancel plans and take care of myself like I need to. So while it may be frustrating on the outside looking in…just imagine being in the other side of that.

We’re Not Avoiding You, We’re Avoiding Pain

So with all of that, please try and understand that while it seems like there’s no logic or pattern to what we’re doing. It may be confusing that we call and talk one week and then we disappear to the point you consider putting our face on a milk carton. We’re not being terrible friends intentionally. We probably feel MORE isolated than our seemingly odd behavior makes our loved ones feel. But for us, it’s like being held hostage by your body sometimes. You never know if it’s going to let you out and enjoy the fresh air for the day, or lock you in isolation without warning.

We’re not trying to push you away, we’re trying to survive and sometimes it’s just a bit difficult. We still love our friends, and we still need them. We just also just ask for a bit of understanding of what this personal prison is like while we’re trying to do it.

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.

She says “Oh.”

*Fact: You never want to hear your doctor say “Oh” when looking at any test results

I say… OH???
Her…Your neck is bad. Really bad
Me…….. >Can I just get a new body? Because this one sucks donkey turds.
Her….. No, but let’s see what we can do.

Increase Gabapentin to max dose.  Another round of my favorite <snark implied> nemesis, methylprednisone.  Add Topamax for migraine control and to help with the tremors in my hands caused by the nerve damage in my neck.  Order an inflatable home c-spine traction device.  Caudal injections in my l-spine and SI joint . She wants an epidural block done on my c-spine .  All of this in an effort to put off cervical spine surgery for as long as possible .

It’s one of those days where too much happened in a very small time frame.  And now, I’m sharing my pity party with all of you.

But, I will process these new problems, and I will add these new meds to my overflowing pill planner.  And most importantly, I will tell myself what I always tell myself whenever a new roadblock pops up.

It is what it is.

If I cannot change the facts, fix the problem, well….. there is no point in making myself miserable over it.  We cannot dwell on that which is impossible to change.
               
*Pssssssst…  I still want that new body.  Preferably one about sixty pounds lighter, and ten years younger. 

For me, as a child of the seventies, none of the doctors in my pissant, backwards, steel town, had even heard of Ehlers-Danlos. Of course neither had my parents. It seems as if I always knew that my joints were different, that my body could do things other kids couldn’t. It started when I was quite young, I believe I was three when the doctors put me in hard, metal braces with special shoes, from my ankles to my waist.(think Forrest Gump) There were multiple reasons given for the braces… hip dysplasia and spontaneous subluxations of the hips and knees. Ankles that were weak, etc… I wore those things for two and a half years.

I can’t remember a time when I couldn’t spontaneously sublux whatever joint I wanted. I delighted in freaking out my classmates by pulling my shoulders out of socket, and then putting my arms behind my back, but in the opposite direction. I was pretty athletic, and I  sprained my wrists, knees and ankles more times than I can count. The doctors would be astounded at the enormity of the swelling in my sprained joints, and would insist that they absolutely *had to be* broken… Nope, always sprained. They told my parents that my joints were just “wonky”.

In addition to all of the problems with my joints, I also had numerous issues with my bladder and kidneys.  Most notably, the urethra tube between my kidneys and bladder wouldn’t stay open, causing urine to be trapped in the kidneys, causing massive infections.  The urologist would stretch it back open only for it to close up again a few months later.  I spent so much of my childhood in the pediatric wing of our local hospital, once staying for almost a month!  I had my favorite nurses, I  even learned how to ride my IV pole in the hallways.  But still, not one of my doctors put the puzzle pieces together.

I grew up, I joined the Navy, and even they thought something was wrong with me (I developed my postural tachycardia while in the Navy) Forever passing out whilst standing formation, waking up in medical, hooked to an IV, getting electrolytes. They even referred me to a rheumatologist, but they came up empty.
Then came my first shoulder surgery, my right one, it just would not stay in place. An open procedure was performed, leaving me with hellacious pain, and a scar from the edge of my neck, all across my shoulder blade. Still, no doctor caught on.

An accident in 1999 resulted in a posterior dislocation of my other shoulder, I’ll spare you the details, but after five separate surgeries on my left shoulder, it still subluxes if I dare pick up a gallon of milk with my left arm. Still, no bells went off in my doctor’s brains.
Another accident, more surgeries, tachycardia, degenerative disc disease, SI joint dysfunction, trochanteric pain syndrome, gastro, and the list went on and on.
Until one day, at forty-seven years old, I sat in my primary care doc’s office.
Me “My knee is bugging me, especially when it slides sideways out of place”
Him “Knees don’t slide sideways out of place ”
Me “well… mine do”
*proceed to demonstrate*
Him. *shudders*
“First of all, never do that again. And second, you are going to see a rheumatologist, because suddenly all of your problems make sense.”
The rest is history. Saw the rheumatologist, she confirmed diagnosis, and suddenly I’m a Zebra. And I have never felt so vindicated in my entire life.
I wanted to tell all of my childhood doctors, and my parents, and even my teachers
SEE????? I was not, and I am not, a hypochondriac.

Wow, that took a lot to write, but I feel good for getting it out there.
Thanks for *listening*
~Tammy

When we’re talking about the term in a medical sense, it means when an additional disease or disorder is present at the same time as another. This is important because many in the medical world are taught to look for a single underlying cause. Think to many of the episodes of the TV series House. “She has low blood pressure, elevated white blood cells, seizures, migraines….what is the one cause?” But EDS patients aren’t your run of the mill patients and we come with quite the laundry list of cormorbid conditions.

Why Is This Important?

Awareness is one of the greatest tools in your arsenal. The more we are aware of potential problems, the more we can hopefully catch them before they progress. This is also important because EDS patients can’t safely take the approach of “one core cause” when it comes to our health. We must treat each individual illness that may decide to tag along with that base diagnosis of EDS.

It is so important thatThe Ehlers-Danlos Society even has a whole Coalition of physicians dedicated to researching cormorbids! EDS is so much more than being hypermobile or flexible, it means a whole range of potential problems that we face every day throughout our lives.

Unofficial List of Comorbidities Associated with EDS

The bulk of this list is from the wonderful site Oh Twist!, though I’ve added just a few that I’ve seen within the community. Please make sure to check out their site as there’s a lot of really wonderful information there so we can support others in the Dazzle! Please keep in mind that this list is not the official list of comorbidity conditions, they are a list that has been gathered from members within the EDS community and is not meant to be used as a diagnostic criteria.

• Fibromyalgia
• Local Anesthetic Resistance anesthetic is either ineffective, weak, or wears off quicker than normal
• Chronic fatigue, often diagnosed as CFS/ME
• Chronic Pain of ALL kinds, including RSD/CRPS, arachnoiditis, neuropathies, radiculopathy, neuralgia, fibromyalgia, etc. often invisible on scans
• MCAD (Mastocytosis or the newly recognized Mast Cell Activation Syndrome aka MCAS – ICD-10 code to come soon hopefully in 2014)
• Fibromyscular dysplasia (deformity of the arteries, especially leading to the kidneys)
• Autism Spectrum  (all levels) and related conditions (OCD, ADHD, SPD)
• Auditory Processing Disorders
• Apraxia (loss of speech, ability to speak) and/ or selective mutism (when under stress)
• Mood disorders, especially anxiety and depression (likely organic in origin and/or secondary with ASD)
• Syringoma, Keretosis pilaris, Milla as well as other benign skin conditions
Thyroid issues (high and low, often auto-immune despite normal TSH “levels”)
• MS and other auto-immune disorders (RA, Sjogren’s, Lupus, Ankylosing Spondylitis, OA, more)
• Arthritis of all kinds, especially early onset Oestoarthritis in the spine, neck and hands, but RA common also (really AI also)
• Irritable Bowel Syndrome (IBS) & proclivity toward constipation, but with quick flips to diarrhea (likely food allergies/MCAD)
• Incontinence at any age (often from occult tethered cord and/or MCAD or allergy induced)
• Uterine or rectal prolapse, pelvic floor dysfunction
• Frequent (seemingly idiopathic) nausea and vomiting (may be from impinged vagus nerve/MCAD/hiatal hernia/gastroparesis/Chiari)
• Dysautonomia of all kinds, most notably poor temperature and BP regulation (high or low, see POTS below)
• Raynaud’s phenomon (blood vessel constriction from cold, stress) pronounced “ray-noe’s”) – a form of dysautonomia
• POTS (Postural Orthostatic Tachycardia Syndrome) – a subset of dysautonomia involving BP drops and syncope (fainting)
• Hyperadrenergic POTS (aka HyperPOTS) – a subtype of POTS involving more variable BP and adrenaline responses
• NMH (Neurally Mediated Hypotension) – another form of dysautonomia affecting BP
• Livedo Reticularis (purplish/white “mottling” on skin surface from likely small capillary spasming)
• Frequent joint dislocations and subluxations (partial dislocations) or being so-called “double-jointed“
• Behcet’s Disease
• Club foot at birth
• Partial syndactyly (connected fingers or toes seen at birth)
• Mitochondrial disorders and deficiencies
• Kidney trouble including diabetes insipidus
• Diabetes miellitus and Metabolic X syndrome
• Sensory Processing Disorders
• Tinnitus (ringing in the ears)
• Empty Sella Syndrome (common wtih Chiari Malformation apparently too fwiw)
• Insomnia (trouble falling and staying asleep, multiple causes in the EDS patient including pain and hyperadrenergia)
• Sleep apnea, both obstructive airway issues and Central Nervous System (CNS) Apnea(neurologic in origin requiring a sort of breathing “pace maker”)
• Cranio-cervical settling (which may cause the CNS Apnea) and attendant neuropathic issues and glaucoma
• Hypotonia (unusually weak muscles despite “training”) sometimes presenting as “floppy babies”
• Syncope and pre-syncope (fainting and near fainting) and unusually low BP
• Dizzyness (with or without syncope)
• Common Variable Immune Deficiency (CVID) of all kinds leaving us prone to frequent & worsening recurrent infections of all kinds, especially respiratory & UTI’s
• Interstitial cystitis
• Lymphedema and angioedema (the latter comes with MCAD triggering usually)
• Lipoedema (not the same as lymphedema, also spelled “lipedema” in US) an adipose (fat) tissue disorder causing unavoidable weight gain and lipomas
• Dercum’s disease (see Lipedmea above, looks a lot like that plus MCAD)
• Endometriosis
• PCOS and menorraghea (very heavy periods)
• Tendonitis and bursitis of all kinds (aka “soft tissue rheumatism”, alt. tendinitis)
• Keratoconus or thinning /”pointy” corneas that lend to astigmatism
• Fuch’s Dystrophy a cornea disease that effects the middle layer of the cornea
• Uveitis (inflammation of hte uvea of the eye, common with ankylosing spondylitis)
• Varicose and spider veins, often early onset, easy bruising and bleeding from same
• Phlebitis
• Migraines and headaches of ALL kinds and durations, (often driven by hydrocephalus from MCAD)
• Food and drug allergies and sensitivities with a lot of paradoxic and unexpected super sensitive reactions
• Bleeding disorders including Von Willebrand’s
• Strokes
• Mitral valve prolapse
• Aneurysms of all kinds, anywhere
• Easy bruising often from no apparent cause or injury
• GERD (weak hiatal sphincters and MCAD can contribute here – the stomach produces acid in resopnse to histamine from food reactions)
• Gastroparesis (slow or no stomach emptying) and dysmotility (poor digestive movement) beyond just constipation and IBS, possibly from impinged nerves & vessels
• Idiopathic postprandial syndrome and/ or “Adrenergic hormonal postprandial Syndrome” (sort of “pseudo-hypglycemia” in absence of low blood sugar measures)
• Chiari malformation, including occult (hidden) Chiari aka “Chiari Zero” formation (“saggy” hind brain, often protruding through the back skull, but not always)
• Tethered cord
• Syringomyelia or “syrinx formation” in the spinal cord (may be caused by long term hydrocephalus)
• Spondylolysthesis, spondylolisis (misalignment of the spinal vertebrae in various directions – front -to-back, side-to-side)
• Cranial cervical instability, esp C1-C2 “owl turns” and “bobble-head” issues (trouble keeping head on neck, literally, with resulting neurologic issues)
• Thoracic outlet syndrome, brachial outlet syndrome
• Seizure disorders and epilepsy
• Fallen arches (pes planus)
• Sciatica
• Bilateral hip dysplasia (ability to “pop” – aka sublux – hips out and back in easily, which should be avoided!)
• Cerebral Spinal Fluid (CSF) leaks including CSF rhinorrhea, CSF otorrhea (CSF leaks out nose and ears) or anywhere along the dura (lining of spinal column & brain)
• Celiac disease and all forms of gluten sensitivity
• Malabsorption and malnutrition and nutritional deficiencies despite diet and even supplementation sometimes. (Poor absorbption).
• Electrolyte imbalances (often low potassium)
• Osteopoenia (low bone density) and osteoporosis (brittle bones), often early onset
• Scoliosis (deformity of spinal curve) of all kinds including kyphosis (aka “roundback”, forward bent spine)
• Hiatal hernia (stomach to esophagus sphincter) and all other forms of hernias just about anywhere (inguinal, duodenal, abdominal, etc.)
• Costochondritis (pain at front rib attachment point to sternum)
• Chondromalacia (cartilage loss) of all kinds, especially patellae (loss of cartilage in the knees, but can occur elsewhere, e.g. hips)
• Frozen shoulder
• Geographic Tongue
• Petechiae (dark purplish spots, essentially flat blood blisters under the skin, common in those with MCAD with high heparin levels)
• Metal and other environmental allergies, especially nickel sensitivity (ELISA testing often helpful, pre-test all implant materials)
• Diastasis recti, (splitting of abdominal wall along the midline) even in males and unpregnant females
• Striae aka “stretch marks” even in males and young (prepubescent) females (i.e. not always associated with pregnancy!)
• Myopia (often severe), macular degeneration, astigmatism, keratoconus
• Strabismus (crossed eyes) or wandering eyes from likely weak eye ligaments
• Bruxism (jaw clenching, tooth grinding)
• TMJ pain and issues, subluxations and dislocations (Temporo-mandibular joint syndrome, jaw alignment trouble)
• Restless Leg Syndrome (RLS) and leg cramps (often eased by increased magnesium)
• Neuromas in the feet
• Plantar Fasciitis
• Chronically low Vitamin D and B12 levels (caution urged for those with MTHFR mutations with the latter, may need a different form of Vit B)
• Weak or crowded teeth, many need early or partial dentures
• Receding gums
• Urticaria (hives) and Urticaria Pigmentosa (persistant hive-like patches, part of MCAD above)
• Hair loss early, and even in women, especially those with signs of MCAD or iron imbalances
• Deviated septum (misaligned nasal cartilage)
• Trouble swallowing & choking issues, often neuropathic in origin from CCI, sometimes due to floppy laryngial tissues
• Esophageal spasms (can extend to anywhere along GI tract also)
• Skin tears or rips, trouble suturing, would dehiscence (trouble healing post surgery, especially soft inner tissues)
• Liver problems, including fatty liver and lesions, enlarged liver
• Enlarged gallbladder & spleen, appendicitis (may be MCAD driven)
• Vocal cord dysfunction
• Hearing loss from a variety of causes, some bio-mechanical, others neurologic
• Diverticulitis and diverticulosis
• Breast Ptosis (sagging, droopy breasts)
• Crohn’s and colitis
• Leaky gut syndrome
• Retinal detachment and tears (rips)
•  Dry eyes and blepharitis (bacterial eyelid infections), as well as retinal tears and more
• A perpetual case of dishes – seriously. From having to cook only whole, unprocessed organic foods you tolerate right? (Mine are all consuming anyway…)