How Standing Strong With My Queerdom Has Helped Me Cope With EDS

“Honey, did your boyfriend tell you to get all those tattoos?”

• What is Ehlers-Danlos Syndrome?
• What Are Common Ehlers-Danlos Syndrome Symptoms?

It took everything I had to remain calm and polite in the face of yet another incident of sexism, misogyny and misplaced heteronormativity. Clearly this former coworker making this ridiculous remark didn’t know me at all, but that’s no excuse.

Instead of rattling off a diatribe about my queerness and independence, which would have likely left me seen as the loose cannon feminist around my place of employment, I did what many other woman are conditioned to do: force a smile and make a comment just snarky enough to soothe my anger, yet not too harsh to break the man’s fragile soul.

“I don’t have a boyfriend, and I get tattoos because I want them.”

I’m used to being mistaken for a straight woman. I’m used to men hitting on me then being completely floored when I tell them I am not interested in men. I’m used to them following it up with “But you’re so pretty!” or “Have you actually ever dated men though?”

Over the years, I’ve had to learn to deal with these interactions. I’ve perfected my facial expressions and my verbal responses. I’ve added bits of flare to my appearance and fashion through piercings and tattoos as a way to subtly showcase my Pride to the world. These things are mere annoyances, though, because in many ways, being invisibly queer comes with serious privilege. What I deal with is truly nothing compared to what so many other queer people, particularly trans-women, are forced to struggle with on a daily basis.

More recently, however, I’ve had to come to terms with the consequences of yet another type of invisibility due to another facet of my being I cannot control, and it’s made it a bit harder to cope with the isolation that comes along with it.

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For years, I’ve been in pain. All day, I twist and pop my neck and shoulders, attempting to get them back into the places they feel they should be. I throw pills back every four to six hours trying to keep my migraines at bay. I come home at night completely depleted with just enough energy to shower and collapse into bed.

It wasn’t until a few months ago that a doctor was finally able to give me a diagnosis that explains my symptoms, though it wasn’t one I wanted.

Ehlers-Danlos syndrome (EDS) is a group of genetic, chronic connective tissue disorders caused by faulty collagen production. A physician diagnosed me with hypermobility-type EDS, which affects one’s joints, skin and intestines, among other things. In a nutshell, my collagen is not produced sufficiently, therefore my ligaments are too stretchy, causing my joints to be unstable. My muscles then have to do all of the work, resulting in constant spasms and knots. My skin is also fragile as a result of my condition, making it difficult for any wounds to heal properly. EDS also causes chronic fatigue and headaches, two symptoms that are incredibly difficult to manage. But even with all of our varied symptoms, on the surface, most of us with EDS appear “normal.”

 

Every single person’s EDS looks different. It manifests in countless ways, which is one of the reasons why it is one of the most under-diagnosed medical conditions. Even my physical therapist, who I now have to see twice a week to try to strengthen my overworked muscles, was shocked when I told her my diagnosis. Very few doctors and other professionals ever actually meet a patient with EDS face-to-face. They mostly just read about us in books, and that’s only on occasion.

While in medical school, students are often told this simple phrase to help them diagnose patients who present with odd, multi-faceted symptoms: “When you hear hooves, think horses – not zebras.” In essence, this means that most of the time, patients’ complaints are the result of a common problem, and doctors shouldn’t jump to rare conditions. However, there are far more of us zebras out there than people, even doctors, realize.

This lack of awareness about our condition and our mere existence adds even more trauma to the struggling so many of us already experience. Anyone dealing with an invisible illness knows how isolating that can be. Constantly trying to explain ourselves to our doctors, our friends, our family members and our coworkers is exhausting. Being told we have no reason to be tired or that we are probably just exaggerating is hurtful. Having people “compliment” us by saying, “You don’t look sick!” is demeaning.

Many people with different conditions and disabilities often have physical difficulties with doing even the simplest things. For example, I am no longer allowed to lift anything of any weight above my head. It’s also very taxing for me to do things like make my bed, take out the trash, hold my niece, etc. Although I don’t look “disabled” on the outside, my body fails me on a consistent basis.

For those who don’t know about my condition, I can come across as lazy. But that’s the farthest from the truth. I crave to return to the time when I could clean my apartment without being in pain for days; when I could carry my groceries from my car to my house without having to stop halfway to rest; when I could go to the gym and lift weights and jog and sleep and breathe without crying. If I could run a marathon, I would.

Judgment from others is an extra burden many of us unfortunately have to bear, and it’s something I am having to get used to.

No one should ever have to explain or defend their chronic condition or their disability to anyone, just like no one should ever have to explain or defend their sexual or gender identity.

And although I am in the early stages of accepting the chronicity of my disorder and the stares and comments from others, I know I must stand just as strong with it as I do with my queerdom.

I was already in the closet once before in my life, and I am not about to go back in it.

In some ways, it makes sense I have this condition that is so varied and difficult to pin down. That’s me in all of my infinite queerness: unidentifiable, perplexing, ambiguous. Those are things I actually like about myself, so now I just need to learn how to make peace with it in regards to my illness.

I am proud to be queer. And I must also learn to be proud to be a zebra, even if no one hears me and my hooves coming.

Thinkstock photo via Transfuchsian.