Why I'll Talk About Anything Except My Ehlers-Danlos Syndrome


I do not want to talk about this. 

No, I mean it. I really don’t. I will talk about other vulnerable things all day long. 

I will talk about my struggles with anxiety, depression, mania, suicide, and hospitalizations, you name it. I will talk about dropping out of college — twice. I will talk about being broke, moving back in with my parents, moving back in with my grandma, and my dad going to prison and rehab. I will talk about being sexually assaulted — three times. I will talk about my drug use, my partying days, my three failed relationships, and how many people I have slept with. I will talk about my body image. I will talk about my failures. I will talk about the bad decisions I have made. 

But I do not want to talk about this

I am embarrassed of the limitations of my body and the lack of self-discipline, self-love, and self-acceptance I have to do what is best for it.

I read so many stories of people who spend years and years deteriorating slowly, searching for a diagnosis, praying for a doctor who would believe them. I read stories of people who have been put off for months to get physical therapy or surgery or what have you simply because their doctors don’t believe their symptoms or complaints. I don’t have that story. 

Ehlers-Danlos syndrome was a proposed diagnosis by a hematologist I saw once when I was 6. First visit to an orthopedist, and they’re like, “Oh, yeah, totally, you’ve got this.” I go to Texas Scottish Rite Hospital for Children, and they hook me up with ankle braces, finger braces, and at-home physical therapy. When I was 10, my audiologist hooked me up with some hearing aids. When I was 13, I injured my hip and had surgery within the year. When I was 17, I had headaches and fainted a few times. I got referred by a neurologist to a cardiologist and was diagnosed with postural orthostatic tachycardia syndrome (POTS) within weeks. Now, at 22, I’m going through some issues with my spine, and I’m taking the steps to get it taken care of. I have worked on managing my pain through acupuncture, meditation, hypnosis and physical therapy, avoiding painkillers as much as I can. 

I have never had a doctor tell me they think it is all in my head. I have never had a doctor tell me there was nothing they could do for me. 

You would think this would help me to be comfortable in my body. In addition to the helpful doctors, I have a supportive family that has always listened to me, been there for me through surgeries and appointments, and understood the few limitations I allowed for myself. 

But it didn’t matter. 

Once a year, at least, I would find myself crying into my mother’s lap, saying over and over again, “I just want to be normal. I just want to be like everyone else.” 

That hasn’t changed. 

I have lived in this body for almost 23 years, and I still just want to be “normal.” I just want to be like everyone else. I don’t acknowledge my limitations, and every year I am able to do less than I could the year before. I have consistently refused to accept that at any point in my life that was the healthiest and most able I would ever be. I cried the other day because I saw a video of a man waterskiing, and I had never been waterskiing, and I realized I would probably never get to waterski. 

I understand that I have other capabilities and talents. I’m a writer, a guitar player, a receptionist, a sister, a friend, an adventurer. I’m funny and smart and curious. I am a lot of things besides disabled. 

So, how am I working on accepting myself for my abilities and limitations? I am making myself live in reality. And here it is:

My reality is that I am most likely not going to get more spoons over the course of my lifetime. I am not going to have the same number of spoons over the course of my lifetime. So what can I do to have more energy, more joy, and be able to do more things? Spoon conservation. 

Yes, I look like a perfectly healthy 23-year-old woman. But I need an accessible parking sticker so I don’t waste spoons walking into/out of the mall and more time enjoying myself in the mall. I need the motorized shopping cart so I can buy all the groceries I need and not just what I can grab in 10 minutes because I can’t be on my feet for longer than that. I need the walker with the fold-down seat at the festival so I can sit whenever I need to and not push myself past my limits and end up miserable. 

But here’s the thing: I am terrified of these things. I have never made myself out to be different in my life. I have never stopped playing the game or turned down the trip to Six Flags. I sucked it up, put a smile on my face, had a blast, and cried myself to sleep. I have never been made fun of in my life, and at 23 years old I am not emotionally prepared to be questioned, suspected, or poked fun at for having to use these aids. But I have to remind myself that my overall joy and my overall health is more important than what people think, say, or do.

I have to be my own #1 advocate. I have to love myself more than anyone else can love me. I know my body, and there are so many things I can do. There is no shame in knowing and enforcing your own limitations. 

I don’t know if anyone out there has felt or feels similarly, but if you have, you are not alone. Let us be vulnerable and insecure and limited together. People like to tell me I’m strong, but strength is not ignoring your problems. Strength comes from accepting your weaknesses. So here I am. Let us be weak.

We want to hear your story. Become a Mighty contributor here.

 


Find this story helpful? Share it with someone you care about.


Related to Ehlers-Danlos Syndrome

Sad girl looking out of window

I Shouldn't Be Embarrassed That My Life Is Ruled By Ehlers-Danlos Syndrome

I am embarrassed by my life. I am 25 years old and I still live with my mother. I still depend on her to drive me everywhere because I can’t drive myself. I depend on her to support me financially because I cannot work and support myself. I wasn’t able to finish college because the pain and [...]
bandages on woman’s hand

To the Hand Specialist Who Acted Like He Was the Judge and Jury

I’m still processing our first important appointment we had a couple of months ago, and I thought it might be helpful if I articulated my feelings during and after our meeting to let you know why I won’t be coming back. I arrived in your office a sunny day in late winter. I was dressed [...]
female student walking to school wearing a backpack

The 10 Realities of Living With Ehlers-Danlos Syndrome as a Teenager

In April of this year I became very sick with fever, bloody urine, horrific flank pain, extreme fatigue to the point of not being able to stand, and severe nausea. I was bedridden and in and out of the ER and children’s hospital as well as Mayo Clinic in Rochester for four months. I had multiple [...]
woman standing in trees with black paper over her mouth that has a white smiling mouth drawn on it

10 Haunting Photos That Symbolize the Invisible Struggles of Ehlers-Danlos Syndrome

There is no easy way to explain how it feels to live with chronic illness. No words to harness the experience of enduring pain, crushing fatigue, and disorienting mental fog. No convenient conversation starter to express the mourning over impossible dreams or frustration over daily failures. No support to reach for when your body is [...]