May is Ehlers-Danlos Syndrome Awareness Month, the second I’ve experienced since receiving my diagnosis. This year, I implored friends and acquantainces to submit questions on the topic of EDS and how it affects my daily life.
However, I failed to realize that the world I’ve come to inhabit since I stopped going out regularly is radically different from the world as experienced by most of my able-bodied friends.
Every trip is now a great expedition: I leave the apartment, consistently with a mobility device and yet, most aborted trips are due to lack of access. If the service elevator is out-of-order or an able-bodied person rushes ahead of me to take it, I have to wait in pain as the precious few minutes that I can stand expire quickly. I could opt for the longer route, across the street and up a wheelchair ramp; but what I need most is fewer steps, period.
In both situations, neither of which account for my disability, I’m at risk of falling and and injuring myself further. It’s common that I cancel the trip and return home.
Even in the rare times when my disability is invisible, I still wrestle with feeling erased in conversation. I’m especially irked when a disability — mental or physical — becomes the punchline of a joke.
These are windows into my reality, one I hope is shockingly different from your own. While I can’t speak to the experiences of all disabled individuals (within the EDS community alone, many different disabilities exist), I can describe my experience navigating the world. Below are several points I wish you understood about my life and illness:
My Support Group Is Sacred
As I’ve explained in previous posts, Ehlers-Danlos Syndrome affects almost every system in my body. Personally, in addition to the recurrent issues with my joints, I also have problems with my eyes, teeth, ligaments, tendons, and blood vessels due to EDS as well. From the moment I wake until I fall asleep, I’m in pain.
This is a unique reality I can’t imagine sharing with anyone except those I know will understand. The number of friends I can talk to on my darkest days is relatively small already, and I prefer it remain that way. Yet, the unsolicited introductions continue to appear in my Facebook inbox.
The central issue is that, to some, rare illnesses are cool. I’ve often been in support groups where patients couldn’t talk candidly about their conditions because able-bodied caretakers and curious onlookers hijacked any productive discussion. There are many who end up in support groups but do not belong, and even though discussions are moderated, ableism can still creep in.
Please, I understand that you want to help, but connecting me with your colleague, friend, or family member who also struggles with a rare illness does neither of us a favor. Often, I’m not ready for new friends. I simply don’t have the spoons to vet the newcomer.
For my own mental and physical wellbeing, those closest must also be like me. It’s crucial that they understand my variant of the syndrome, and have the same commitment to scientific understanding that I do, since most information regarding EDS is still emerging.
I may be disabled, but I’m still an adult and capable of assembling my own support network.
I Don’t Exist to Inspire
Seeing a young person with mobility aids creates the opportunity for questions. Even strangers will ask “what happened?” when I step out in braces and crutches, but not one was prepared for my response.
Without hesitation, I explain the basic tenets of Ehlers-Danlos Syndrome, and how it is disabling me before I turn 30, while they leap for the safety of platitudes. Yes, it is terrifying; I don’t need to be informed of that.
As they’re stumbling for the right words, I sit in cold silence. “Wow, I don’t know if I could handle that,” they say.
The fact is, if I’m out of my home, I’m alright. The public rarely sees when I break down. Mostly, I’ve spent moments of intense pain at home where I can be assisted by family, and canceling outside plans.
Unless I’m in obvious distress, you don’t need to say or do anything. When I share my condition, it’s to encourage understanding. I’m not looking for advice, nor do I exist to inspire the able-bodied around me. Far too often I’ve heard a reflexive quip that I somehow possess superhuman strength and stamina, or the suggestion that if I try essential oils, my body will magically knit itself back together. No thank you.
These comments and recommendations aren’t intended for me. Instead, they’re familiar and comforting to the speaker, and to the speaker alone. There’s nothing to say that hasn’t already been said, and that’s fine.
Try not to be shocked when a young person reveals a disability you didn’t expect. I cannot stabilize the emotions of every stranger who asks and is caught off guard.
How You Can Help
My greatest challenge today is mobility. I’m elated at the thought of going out to see live music or grab a beer, which I know my wheelchair will enable.
Soon, I’ll be interacting with society in ways I haven’t in a year. I hope you can be mindful of my disability when I move about, while also allowing me to be mostly self-sufficient. I’ll need advocates in public and privates spaces, ready to speak up for me when the time is right, and remain silent when I have the spoons to raise my own voice. Above all, I ask that you be present and truthful.
If you offer assistance, please be ready to deliver. If you make a big deal out of being concerned for my healthcare, call and lobby. If you don’t know how to advocate best, ask. I don’t mind.