• arielaaviva

Finding my herd

The people of Ehlers-Danlos Society's conference in Baltimore

I was curious, when arriving at the EDS Society's conference this summer, who I would find there. Looking around the conference room, it was striking to me how many people were in wheelchairs, wore intense neck braces, finger splints, used canes/crutches, etc. I immediately felt a pang of fear -- is this my future? But looking around, I actually felt comfortably in the middle. I think a part of me still clings to the "it's all in my head, I'm not really that sick, I don't deserve to be here" trope that was ingrained by years of misdiagnosis and detrimental medical experiences. So it was nice to see people worse off than me, to remember to appreciate how well I'm doing, while simultaneously having a visual reminder that this disease is real and I do deserve the support.


One of the cool things about this conference was that recognition we saw in one another's experiences, and the support that came with understanding. I've been to several conferences for work, and it always ends terribly. I can't eat any of the food, sitting for so long throws all of my joints out of place, and socializing with so many people uses up all of my spoons. The result is that I'm in too much pain to learn well and I become horribly ill.


This conference was so different!! The food was cooked in such a way that I could actually eat every meal. I never felt pressure to sit "professionally" -- looking around, everyone was sitting in a way that would help control their symptoms, like putting feet up on the chair in front to keep blood flow to the brain or changing position every few minutes to give joints a rest. I didn't feel the usual pressure to sit upright, so I brought pillows each day and laid down across several seats or on the floor. I get headaches from lights used in conferences, so I spent much of the time with sunglasses and/or a black cloth over my eyes. No one looked at me strangely; more than a few people exclaimed "what a great idea! I can't believe I didn't think to bring pillows!" I was never the only participant on the floor. Sometimes we'd share tips for feeling well at conferences, but mostly we all knew the cost of socializing and kept it to simply smiling at one another and helping each other up after each talk. It was so refreshing to see people doing what was needed to feel well with pride and confidence, rather than sneaking it when allowed by our professional world. I saw many Vogmasks and sunglasses, and knew this was where I'd feel at home.


I've often felt that zebras, and really people with any chronic illness, seem to be amazing people in general. I actually feel grateful at times to have been handed this deck, if only for the chance to be part of such a nurturing community. Zebras are kind, compassionate, and extraordinary problem-solvers. We have the skills to be fiercely independent (from having to handle situations that doctors/friends/family don't believe are real for so long) yet also appreciate the value of asking for help. We have learned the pain of not being believed or able to speak our truths, and therefore value honest sharing and listening. I have also felt amazed by the collective intellect of spoonies. I think it may have to do with the need to problem-solve and research our diseases on our own, but also maybe HSP -- highly sensitive people (again, not just emotional sensitivity, but an especially sensitive nervous system) tend to have high IQ's and be more observant than others. Whatever the reason, a few of the specialists who spoke at the conference actually commented that, despite the brain fog and other cognitive issues, zebras tend to be some of their most intelligent and curious patients.


Whatever the reasons, I feel more proud each day to be part of this community of bendy, weirdo, wonderful zebras. I'm so thankful to have found my herd.

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