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How I Relate to Hannah Baker as Someone With Ehlers-Danlos Syndrome and Chronic Pain

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Editor’s note: If you experience suicidal thoughts or have lost someone to suicide, the following post could be potentially triggering. You can contact the Crisis Text Line by texting “START” to 741-741.

This isn’t a topic I like to write on because there is a part of myself I haven’t shared with a lot of people. A deeply private part of my life. An intimate secret I’ve hinted at a few times briefly through my years of erratic writing. But there are things I need to say – to myself, so I can hear them too, instead of sitting in these feelings. It’s nearly 4 a.m. and I just finished the new Netflix show “13 Reasons Why.” So what does that have to do with me, peeling back the layers that have held this part of myself in the dark for nearly five years?

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

In 2012, I attempted suicide.

This show was deeply personal to me. Not necessarily because I was bullied (I was), not because I am currently feeling suicidal (I’m not), not because I’m in the midst of a depressive episode (I am), but because there was a point in my life when I was like Hannah Baker. I want to talk about how I got there, and where I am today.

I struggled as a medically complex patient for my entire life. I’ve navigated the medical system as an adopted person with no medical background, facing the practices that usually don’t fail patients with typical illness, but can fall short for people like me. I’ve lived with a history of medical neglect. I have an incurable genetic condition called Ehlers-Danlos syndrome and experience chronic pain. What does this have to do with 2012 and suicide? Everything. Every. Single. Thing. There are a lot of reasons a person might consider suicide. But my reason? I was sick and I couldn’t get help. Not for lack of trying, not for lack of access, but just literally – the people who were supposed to help me, didn’t. They didn’t know how, they couldn’t or they didn’t care. I’ve met people along the way who desperately try to conflate my pain with my depression, with my suicidal thoughts and ideation, but it’s honestly the other way around.

I was in pain every single day and doctors doubted me. They disbelieved me. They invalidated me. They blamed me. And I felt “crazy.” I felt like I was “insane,” as if I had done it to myself, like maybe they were right, maybe, just maybe it was all inside my head. I tried to commit to not feeling pain anymore, not being tired anymore, not being “crazy” anymore. And the more I tried to commit to that, the further I sank, until I felt nothing. Except well, that little tugging, that tickle, the one in the back of your head when you’ve gone numb, the tiny thought you’re a burden, worthless, an inconvenience. With each following day, that tickle became background noise and then an all-consuming roar. I felt like an inconvenience to my friends, my family, my husband, my doctors, strangers in the store, the person crossing the street, the mailman —  it didn’t really matter who. I felt like an inconvenience.

Some of the thoughts I experienced were things like, Why should I live? Why should I have to stay when I’m in so much physical pain every day? Why me? Why won’t anyone believe me? Will it get better? How do I keep going?

It’s 2017. Spoiler: I didn’t die by suicide. I’m still here and you’re here with me. OK, so it didn’t really get better for me — I mean not objectively. I still have Ehlers-Danlos and I’m still in pain. I am still overwhelmingly exhausted. I still have a cluster of interrelated medical conditions. But I’m here. At first, I stayed because I wanted to live for my husband, which is admittedly a lot of pressure to put on one person. That’s changed. Now, I live for myself. I don’t really know how to keep going. There isn’t a roadmap for this shit. Some days the grief I experience from my illness is unbearable and some days, that tickle quietly resurfaces. And some days, I exhale bullshit acceptance ad nauseum.

But that’s why this show resonated with me so much. Because even though I’m living for myself, I still don’t know what the hell I’m even doing, or how I keep going. There is no single profound statement about how not to die by suicide, or how not to be depressed, or how to keep going. Everyone gets there differently and has different needs. Whatever yours may be, it doesn’t necessarily get easier, but you get better at it. You adapt. You keep going. So, how do I keep going? I just do. None of us know though, right? We are all stumbling in the dark for a light switch that doesn’t exist. And that is OK, no matter what your situation may be.

There is just one more thing I need to say though. If you’re feeling suicidal, or depressed, and you think you’re alone and no one notices – they do. They really do. Probably more than you’ll ever realize. Someone noticed me. I didn’t know it until years later, but she noticed, and I am so glad she did. In part, I’m still here today because she did.  Please reach out.

If you or someone you know needs help, visit our suicide prevention resources page.

If you need support right now, call the National Suicide Prevention Lifeline at 1-800-273-8255 or text “START” to 741-741.

 Photo via “13 Reasons Why” Instagram.

Originally published: April 25, 2017
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