Living with Hypermobile Ehlers-Danlos Syndrome, Part 2

Featured image says: Disability isn’t a bad word. Credit to neurowonderful.

This barely scratches the surface of what I experience because of this disease, but here’s a taste:

This is my life with Hypermobile Ehlers-Danlos Syndrome, with chronic illness. Bad things happen out of the blue, and I just have to carry on with the pain. But sometimes it’s physically impossible to do so, like it was last night.

I’m up today, committed to doing work so that I may one day be self-sufficient and financially independent, but being confronted with things like last night make it hard to believe that independent life is even possible. I’m on day three of limited mobility and excruciating pain that won’t be touched by western medicine.

I take my pills dutifully, and they do help day to day. But not for days like these. I’ve taught myself to cope without crying, because crying always makes it worse. Sometimes I can’t hold it in though, and while that release is important, it always has bad physically ramifications. I’ve tried everything I can think of: heat, ice, rest, stretching, over the counter meds, prescribed meds. Nothing touches this pain, this restriction. It literally feels like my lungs are being held prisoner in my own body. I can’t move certain ways or a sharp pain will stab me like a knife. I just want it to stop.

You’re not even seeing the full extent of pain I’m in because even in this video I am masking it. The pain I’m in day to day, and then in these kinds of moments, is genuinely unbelievable if you haven’t experienced it yourself. But I’m asking you to suspend your reality a moment and believe that what myself and many other disabled folk go through, is real. I have 20+ years of conditioning to maintain basic functioning, which you see in this video. It took 20+ years to learn to not cry, to not shout in rage, to honor my body through living with the pain.

Somedays I am capable of exercising, working all day, and engaging in social activities. Some days I can do those things but with limited engagement. And then others I literally cannot do anything. I’ll need help getting from bed to the bathroom. I can’t wash a dirty dish. I can’t even use my phone or laptop because my upper body is too fatigued and in pain. And then some days it feels like I literally can’t breathe.

I am always *me* in any of these circumstances. If you can believe that I am happy and doing well when you see me as such, why does that belief end as soon as I show you what’s underneath?

– my thoughts on being gaslit by friends, family, and medical professionals

Living like this is exhausting. I’ve made so much progress since getting diagnosed correctly last year. In fact, I’ve made so much progress that sometimes I feel like a normal human who can do normal things. And then days like these last three slap me in the face and remind me that I am in fact not normal. The back and forth gives me horrible mental whiplash.

My disease isn’t who I am, no. But it does limit the “who” when it comes to what I physically can and cannot do a lot of the time. It’s a lot of mental gymnastics to get me feeling like I can accomplish anything, but I rebound each time because I know I have a lot to offer this world.

All this being said, disability is not a bad word. I am disabled, and that brings new perspective and compassion for others. So please, when you’re out there in the world judging people by what they can and cannot do, consider that those people are going through things you can’t even imagine and have some compassion (this isn’t just for the disabled either). Consider circumstances before you judge, and even in your judgment, hold some compassion. If you’re an employer, see how you can make your working environment more accommodating. Same for educators, public officers, medical professionals–anyone with power to make a difference. How can we make our society beneficial for all? TALK with the people affected! See their needs and meet them where they are. BELIEVE their lived experience. No more gaslighting!

And if you struggle with “invisible” or “silent” illness, I see you. I love you. You are not alone.

2 Comments

  1. It’s a pain the ass when people know you have mental illness but they think drugs should be the main or only option as treatment. It took me years to find a therapist who wouldn’t first thing after that initial analysis try to put me onto lithium, antidepressants, or anti-anxiety meds. Things I took a long time ago left me amoral and robotic, or left me super aggressive to the point I almost took it out on my son. I know my symptoms are moderate and can sometimes swing to more intense levels, but cognitive therapy, my on and off going to the gym, trying to eat better have so been good enough to let me work full-time jobs, especially when they’re physically active ones in warehouses where the fresh air also helps out. (I hate it in the winters because doors left open freeze us, but I’ll take that bad with the good.)

    1. I’m so glad you’ve found what works best for you so far! Though I’m sorry you had to endure such big ups and downs. I know how you feel though…getting pushed to pharmaceuticals is my least favorite, especially after all the damage they’ve caused on and off. Sending love!

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