Getting Special Accommodations for My Chronic Illness Doesn't Make Me 'Lucky'

Has anyone ever called you lucky for being able to do things others can’t because you have an illness? I have, and if there’s one thing that infuriates me more than anything, it’s this.

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

I’m a senior in high school, and due to my chronic illnesses, I’ve been given special provisions to help me through. To those who don’t understand, these simply try and put me on an even playing field with everyone else. No special consideration can make up for what I go through on a daily basis. They don’t give me an advantage.

One “perk” is my ability to come and go freely. I understand that to most people this sounds like a nice thing to be able to do, but I can assure you, I would give everything to be at school. It’s not a “day off” for me when I stay home. I’m not relaxing and watching movies, I’m trapped in my dark bedroom unable to move due to crippling pain. When I’m not at school, it’s because I can’t be, not because I choose not to be.

I can also rearrange my assessments and exams. I have this ability because on certain days I have such intense brain fog that I can barely hold a conversation, let alone concentrate enough to be able to perform during a test.

I go to a school that requires students wear a less than comfortable uniform, wearing it causes me too much discomfort, so I don’t have to. I’d love not stand out and to be able to wear my uniform with pride, but sometimes I simply can’t have that material touching my skin.

Yes, I have a scribe so I don’t have to write. No, I’m not lucky that I will never feel the fatigue you get in your hand from writing. If that’s the worst pain you have to endure, I’d say you’re the lucky one. Writing can cause me to dislocate my shoulder, often pinching nerves as it happens.

I get to take as many rest breaks as I want. This does not mean I have an advantage because I get a chance to think about my exam with the clock stopped. It simply allows me to finish my exam without passing out from the pain.

Being able to easily obtain medical certificates does not make me fortunate. I have these certificates because I need them, not because I want them.

I do not enjoy taking sleeping pills. I take them because my pain doesn’t allow me to sleep. It is not so I can control my sleeping patterns.

Using the disabled seats on public transport is far from relaxing. To me, it feels humiliating. Fellow commuters stare at me because I look like a normal teenage girl. And when I try and explain that I am sick, I have to deal with the repulsive responses about how I am just being a “typical lazy teenager.”

The number of people who have called me lucky for having these arrangements astounds me. I live with Ehlers-Danlos syndrome, fibromyalgia and her best pal allodynia. If you think my accommodations sound like “perks,” I’d challenge you to live five years with constant pain and fatigue. Since I was 12, I haven’t gone a minute without pain. Imagine dislocating your joints doing absolutely nothing, or the fear that comes with not being sure if you will be able to move when you wake up because your nerves may have temporarily switched off.

Imagine what I feel when certain material touches my skin and it feels as though I am on fire. Try living a day in my shoes and watching everyone around you be able to do the countless things you can’t.

When you can tell me what this is like, then I’ll listen to you. Until then, please try to understand that you are the lucky ones and that these “perks” will never make up for all I have lost.

Thinkstock image via DAJ.