Monday, 13 February 2017

the frustrations of undiagnosed chronic illness

My name is Charli, I am 16 years old, and I suffer from chronic pain and fatigue. I have hypermobility, tight joints and muscles, but otherwise... no-one has said yet that there is anything specific wrong with me.

I'm in mainstream education, and on the face of it, I cope okay. I use a writing slope and wear splints, and I just get through it. I rarely complain, even in hour-long tests where I write 7 pages, or the lessons where I can barely move for the pain in my shoulders and back.

Nobody really knew anything was wrong until I started wearing splints, when suddenly all I ever got asked was "what have you done to your wrists?" with that sense of intrigue, the tone of the impending "get well soon". Their faces drop when I respond; sometimes sarcastically if I'm tired, seriously if I'm not. Their faces drop because they realise they can't say "get well soon".

Because there is nothing for me to get well soon from. This isn't going to go away, and will probably get worse, if the last few months have spoken for the future. I'm beginning to accept this, generally, but every time I see the drop in the sympathy, it's yet another kick. A kick that this is my life, my future, my reality.

Some days all I can think of is the pulsing pain, the cloudiness from the fatigue. All I want is to focus on my work, put down poetic words on paper, or simply work through a set of maths questions. I thought I knew frustration as a child, but nothing is worse than being in school, appearing fine, but battling a fog in my head.

I hate not being able to focus on the whiteboard, read the passage. Some days, my pens feel so heavy, metaphorically or literally; but my ability on the face on it provides no message.

The teachers who say I'm doing fine or talk about how much I've progressed since inpatient... well, they're right. In my strength, resilience, and reduction of anxiety, I'm doing extremely well. But they don't see the headaches, my annoyed tears when their 20 minute homework takes 2 hours. They don't see the hours and hours it takes to push information for a short mid-unit test into my long term memory, because my short has become practically non-existent. Cramming is no longer an option. Several of my classmates tell me that I'll be fine, because I'm smart. Because I'm clever. They will never see my screwed-up face half way through my exam, because even with my rest breaks my wrists scream at me.

And the thing is? This is such a concentrated version of my frustrations, because I don't feel this way every day. But there's this background level, because it's hard to accept. I'm sure I will, eventually. I'll get there. For now, I just keep going.

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