Identity and Disability

Hello gentle-readers! My posts have slowed to a crawl because I have successfully returned to work! Things are going well. Rocky here and there, but overall my health has improved dramatically in the past year. I wish I could bestow on every zebra or spoonie the privilege of a paid year off from work (with excellent insurance) to focus on health. Alas, that is beyond my powers.

I recently started listening to a podcast, which shall remain nameless, about living with EDS/HSD. The podcast has a lot of great advice, but it is also deeply tied to oppressive ideas about food, diet, and weight. One episode in particular featured an interview with a doctor who encouraged us not to see our illness as an identity. He argued that if we do, we become consumed by it and will never get better. I was rather off-put by this notion. “I have EDS, but it doesn’t have me,” is a common refrain in our community. Far be it from me to tell others how they should cope. If that works for you, stick with it. But it doesn’t work for me.

Here’s why:

Even though I’ve only been diagnosed for a little over a year, I’ve always had EDS. And as I look back at my younger life, I can see the way that so many of my personality traits, habits, and characteristics have also been shaped, perhaps even “defined,” by my EDS. For example, I dealt with chronic pain and chronic fatigue from an early age and was forced to learn how to pace myself, and rest. Some of my colleagues have marveled at my ability to say “no” and not over extend myself. Now that I have a diagnosis, I am saying “no” even MORE often as I feel more justified and less guilty about setting those boundaries to protect my energy.

As a teenager, I feared deeply that my asthma would keep me from achieving my academic and social goals. I was sick all the time with bronchitis, or strep throat. I even got vestibular neuritis and pleurisy! I once missed a month of school due to bronchitis. I couldn’t fully participate in PE and had to be given alternate exercises or sit out from running. There were numerous times I was too sick to go to football games or dances that were so important to me at the time. And of course there were the two knee dislocations, the myriad sprained ankles, or the time my friend subluxed my shoulder while we were arm wrestling. Crutches, braces, slings. I felt different and marked by my sick, broken, fat body. When I wanted to do Running Start (a program for high school students allowing them to take classes at a local two year community college in my state), I feared I would get sick and jeopardize my high school graduation, though I managed to pull it off.

Worse, I was convinced no boy would ever be able to love someone as fat and sick as me. I eventually got over that (!) and found a fabulous fat woman to love and love me back. My geneticist explained that, for reasons as yet unknown, lots of folks with EDS have comorbid immune deficiencies. My immune system is currently functioning at the very lowest end of normal. But we suspect given all my struggles with viral and bacterial infections and subluxations in my teen years, it may not have been functioning well at all back then. Those formative years for me were defined by my marked physical differences and impairments.

At an even deeper level, I think about the way early childhood trauma has shaped my personality in conjunction with EDS. I was a screamer as a kid. The neighbors used to laugh that they could always tell when I was visiting my dad’s house because the blood curdling screams would cycle on and off every other weekend. Over time, I have trained myself not to scream, but I am still easily startled. I can’t watch scary movies; I hate the idea of a haunted house; and I am often startled by things that go bump in the night–usually mice–when I take my dogs out after dark. Even roller coaster’s have been out of the question since my early 20s.

As I began to deal with my childhood trauma I gained insight into my heightened startle response, which is common in c/PTSD. But I have learned that EDS and dysautonomia can also lower the fight/flight threshold. Extensive therapy helped me eliminate most of my cPTSD symptoms, but I still startle fairly easily, which is why I suspect EDS plays a role in this. For example, I nearly jumped out of my skin last week when a colleague came to my door and knocked. I could SEE her through the window in my door and I STILL literally jumped out of my seat. Though I can’t blame this entirely on EDS, it seems likely that this is yet another way that EDS has defined aspects of who I am.

When I returned to work this fall, many of my colleagues asked me: How was your sabbatical? Did you go anywhere? Did you do anything? I have found that these questions are uncomfortable to answer. The answer is “Yes, I went to Bend and Seattle multiple times for diagnosis and treatment of an incurable chronic illness.” It’s kind of a downer and conversation killer. Moreover, it is not at all what they are asking about. But it is impossible to answer to their satisfaction, because my sabbatical was fundamentally altered from the norm by my disability. Even my scholarship has changed in response my diagnosis–so focusing on the work I did, doesn’t even get me out of the awkwardness. I don’t always feel comfortable disclosing the level of detail necessary to answer the question at even the most casual level. But, the question is hard to evade … because I have EDS, and my life is defined by it.

I have EDS and EDS has me. Has that stopped me from getting better? Absolutely not. Part of that is because I have been working to learn as much as I can about my condition and implement what ever I can afford/fit in my life to help me improve my joint stability and manage my mast cells better. I’d say that privilege has more to do with it than anything else. I spend an obscene amount of money on supplements. And, I have a team of THREE different physical therapists (joint stabilization, vestibular rehabilitation, and pelvic floor). I have a job that is flexible enough to allow me to visit all these therapists during the week, and have the time to do my exercises in the morning. Moreover, I’m just straight up lucky that all this actually works for me. There just isn’t that much research out there on what treatments are likely to be successful for most EDSers so this is all kind of an experimental crap-shoot. But still, the point stands: Taking on EDS and disability as an identity has not prevented me from healing in the ways that were possible for me. I still sublux something almost weekly. I still get about 5 migraines a month, though I recover faster than I did a year ago. Some things won’t go away, because I HAVE EDS and EDS HAS ME. And that’s okay.

I think the idea that we need to transcend our disabilities is ablest and healthist. Transcendence, improvement, healing, progress … those things aren’t possible for everyone. AND, it is okay to have other priorities in your life beside your physical health. Many of us have to balance our goals for our health with our need to work and bring in money, or to care for our children/parents, or simply with other joyful activities that sustain us and fill us back up. Being sick/disabled and staying that way does not make us less worthy of respect, care, and dignity. Being sick/disabled and staying that way does not mean we have failed. Being sick/disabled and staying that way does not mean that we brought any of this on our selves. Being able to transcend, improve, heal, or make progress is shaped by the nature of our disability and the privileges we have (economic, social, physical, etc). Furthermore, improvement may only ever be temporary … I mean we are all slowly marching toward death’s door.

Yeah, there I go killing the conversation again. That isn’t depression talking. It is the observation of a chronically ill person who is learning to live every day as it comes, the ups, the downs, the good days, the bad days, with equanimity. If I wrestled with feeling responsible for my illness every bad day, I would waste what precious energy I have on fret rather than accepting, resting, and moving on. For me, recognizing that my life has been shaped at the deepest level by my condition is liberating. It frees me from feeling deficient. I mean, how could my life NOT have been shaped by all this? EDS is limiting. It does change my goals and perspectives. And that is okay, because it is okay to be unhealthy and it is okay to be disabled. And just cause it needs saying, it is also okay to be fat while being unhealthy and disabled.

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