My doctor said I was “textbook” enough that she didn’t think I needed the blood work or a biopsy to confirm her diagnosis of Ehlers-Danlos Syndrome.
“Confirm?” I thought. I had only made this appointment because I’d lost a bet; if my husband’s best friend would drop his paternalistic concern, I would take my list of symptoms—hypermobile (overly flexible) joints and attending “clumsiness,” loose skin that bruises and scars easily and abnormally, extreme sensitivity to cold or rapid temperature changes, chronic pain and fatigue—to my doctor during her very next opening. No one in my family had been diagnosed with EDS, which is hereditary; I was sure enough that my husband’s friend was wrong that I agreed to allow him to keep “attempting to help me” if the diagnosis was positive for EDS. It turned out that my scoliosis, flat feet and pronating ankles, easily dislocated hips, and carpal tunnel syndrome were all “complications” of EDS, not their own separate conditions.
I fell a lot as a kid. No one wants Miss Jell-O joints on their soccer team at recess or to play Jenga with Clumsy McGee. But I learned that the same kids who might ignore me in the public fracas of recess pick-up sports could be entertained in other contexts. At birthday parties, I’d kick my foot behind me, then grab it and hook my heel onto the front of my hip bone, hopping around as long as the gasps and giggles lasted, hoping my slippery knee joint would hold out that long. In class, I’d flatten both thumbs against their sides’ forearms, able to pull each all the way up to the inside, snug against the radii. During the gymnastics unit of 4th-grade PE, I discovered I could put my feet together behind my head; later that year, I somersaulted down the hill behind the school like that. I had a bruise for every color of the rainbow and two stress fractures. I still have a scar that looks like an exclamation point along my right wrist. From the bottom, the kids’ applause sounded shattered. But I had found a way to be able to laugh at myself, and I was proud of reaching a new level of emotional maturity.
Falling as an adult, especially often, is less funny and more painful. When I fell walking down the sidewalk and landed on my hands and snapped my pinky like a carrot, I realized I wasn’t going to grow out of this. I still wore ACE bandages on both ankles, knees and wrists mostly every day, especially if I anticipated more walking than usual. I also realized constant aching wasn’t normal; most of my friends could sit in a cushioned office chair for over an hour without cold pain pouring down their legs and enough tightness in their low back to require half an hour of Upward Dog to break it up every time.
So, Advil in multiple bottles clapped their chemically pink, sugar-calloused hands as they retreated to the depths of my purse (hence the various bottles). I began to miss out on more and more social events because I couldn’t trust myself to stay awake past 9:30 no matter where I was. I have fallen asleep in the shower, during an action movie at an IMAX and walking to a bus stop. Working full-time challenged my ability to get to much-needed doctor and therapist appointments and nothing I did helped me either stay awake in the afternoon or get enough sleep at night to avoid the after-lunch slump.
Most people who experience chronic pain or fatigue know its isolating grip. It’s not just the inability to do what pain-free people abounding in energy don’t have to think twice about doing and it’s not just the confused “you-don’t-look-sick” expressions when you do make the choice to disclose. Some of my closest friends have told me how “brave” it is to seek services, how noble wanting a good life is for those who don’t fit neatly into any category culture has created. “You must have an amazing mindset,” they’ll say, as if getting through each of my days, Herculean effort though it is, might not be worth it.
Actually, I don’t have an amazing mindset. I was called “Megativity” up until only about four years ago for a reason. But then, desperate to get out of the emotional, physical and vocational ruts I’d bedded down into, I decided to try something completely new. Doctors hadn’t been able to help me reduce the pain or improve my sleep; therapists hadn’t been able to reach whatever recesses were responsible for my guilt over failing to be a more helpful person or my shame at being who I am and angry depression at the very large amount of bafflingly ugly things human beings are doing to each other and the world. Career counselors had steered me in no clearer direction than I had been able to on my own. Changing your mindset has quickly become all the rage in this culture; I decided to jump on the bandwagon.
Looking for silver linings, writing in a gratitude journal, focusing on what you’re manifesting, cutting “negative” people out of your life, allowing only positive and optimistic thoughts in, none of this worked. There’s absolutely nothing wrong with pushing yourself to be genuinely grateful—I found blessings up to the rafters once I started looking for them. But optimism can be toxic. It can crowd out authenticity, honesty. It can lead to desiring things that, if obtained, would actually be obstacles to personal growth. This is not to say that we should accept suffering because it makes us stronger—suffering can make us stronger; but it has often made me angry, fearful and withdrawn. But my desire to be pain free and full of energy, born out of a galumphing optimism that barred unhappy endings, really was a desire to be limitless, a condition that is impossible for any creature on earth.
Optimism also crippled my ability to come to terms with my condition and my body’s legitimate needs: EDS is chronic, sometimes lifelong and can be life-threatening. Striving for optimism—“who says my future has to be compromised by this condition?” “it’s only sometimes lifelong.”—quickly morphed into refusing to fully face the implications of my diagnosis. EDS is a connective-tissue issue that causes loose joints and can weaken blood vessels: I’m at a higher risk for repetitive injury and permanent bone, joint and nerve damage, as well as aneurysm, arterial rupture, hernias and collapsed lungs.
A positive mindset isn’t going to change those facts. It hasn’t changed my relationship to those facts, either, because working on one’s mindset is an individualistic response to disability and human beings are irretrievably social. Social science has made research into the lethality of loneliness and the detrimental effects of social isolation very popular these last few years. Disability is an especially isolating experience; I’ve found few adequate community resources or social services. Our individualistic culture strongly encourages total self-sufficiency; by optimistically holding out for a body that functioned well enough for me to achieve such a thing cut me off from community. Even able-bodied people are not whole human beings outside of connection with others; that I was being encouraged by friends, healthcare providers and therapists to “think positive,” code for striving for radical self-reliance with no need for anyone, may have been more about the discomfort others feel about disease, perhaps a culturally ingrained hesitancy to support those with chronic conditions or long-term needs than it was about what actually helps sick people. My optimistic mindset may have helped me be superficially nicer to people while it lasted but it wasn’t my bad attitude that kept me from the healing I needed and the things I wanted to do regardless. It was my desire for a body that could do everything all by itself.
