School & Sunglasses: Chronically Misunderstood

This one is inspired by Chronically Dannie. She wrote about her high school violating her privacy, and it brought back this memory I had stored away.

The way high school is set up in my town is we have a freshman center and then a high school for 10-12 grade. Our school is huge and everyone couldn’t fit in the main high school, so freshman had their own building. The administration at the freshman center were super uptight, and were know-it-alls, hence this situation.

If you aren’t familiar with what a 504 plan is read this. I had a meeting about my 504 plan and accommodations, it went fine, they couldn’t come up with very many solutions or things to help me, but that wasn’t a new situation at this point. The next week my mom emailed them to follow up on some plans, and the 504 coordinator responded by telling her she had a new idea. She said I was going to be required to wear sunglasses while at school. WTF? I never wear sunglasses inside and when we told her I wasn’t gonna do that she said, “well my kids who have concussions do it and it helps them, so you should do it.”  She was taken back by the idea that I wouldn’t do that.

Wow I had no idea she had such an extensive background in medicine. Thanks Dr. Web-MD! I’ve never had a concussion and sunglasses aren’t gonna help my migraines, plus do I really need to stick out more? I was already “that girl who’s gone all the time,” I didn’t need to add “sunglasses girl” to the mix. I appreciate her trying to do something, but this wasn’t helpful, and the way she came across also didn’t make the situation better. Also, in what world can you make someone wear sunglasses inside? Definitely not the one I live in!

This just in, sunglasses cure migraines. I guess being in pain was completely avoidable all this time. This also wasn’t the last time that someone told me wearing sunglasses would “cure” my migraines. It’s funny now, but I still think it’s really odd. Have you had any weird experiences or “cures” offered to you due to chronic illness?

Lots of Love,

(and absolutely no sunglasses)

Alyssa

 

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Isolated

Chronic illness is isolating.

I have spent the majority of the past five years alone, in a dark room. I no longer attend high school, and I don’t talk to any of my old friends. I’m not saying these things for pity, or sympathy; they are just simple facts.

Chronic pain keeps me from doing or enjoying pretty much everything I used to. I got sick during the transitional time from elementary school to middle school, so making new friends became really hard. Now that I’ve started online school, I don’t see anyone from my old high school or talk to them. The only “new places” I’ve been going are doctors offices – so I don’t think I’m gonna find any new friends there, but hey ya never know.

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After a few months/years friends and family get tired of asking me how I am feeling. They assume I’m gonna better, and forget I’m sick. But I don’t forget; I don’t have that luxury. They get tired of hearing me say “I’m in pain” or feel fatigued. They no longer want to know about my doctors visits or hospital stays. I don’t blame them, the never ending cycle of chronic illness is tiring and generally negative. Friends were the first thing I lost. A few close ones stuck around a couple of years, but now they’re gone too. My immediate family is still here for me, but my extended family never asks how I am anymore. I don’t need/want them to make a big deal about it – but it would be nice if they’d ask about me every once in a while.

Being alone almost all the time makes going out in public hard. I’m sensitive to noise, and the world is one big ball of sound. I never had social anxiety before, but now it’s exhausting being around other people. I feel emotionally drained even being around family. I know I’m gonna have to get over this, because I can’t stay in my room at my parents house for the rest of my life. I want to go to college and get a good job. Both of those things are gonna have to involve being around other people on a daily basis. I can have a negative outlook on life, and when a lot of negative things are going on it makes it 10x more difficult to act cheery and positive. .

If you find chronic illness isolating – you’re not alone. I’m here and probably in my pajamas.

Lots of Love,

Alyssa