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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12 thoughts on “School & Sunglasses: Chronically Misunderstood

  1. Pingback: Chronically Dannie
  2. ugh! That’s stupid of her to think sunglasses will fix your migraines. Although I will say, as someone who also has chronic migraines, at least she (kind of?) believed you… I know that’s not saying much because the idea was stupid. But there are so many people who think migraines are *just* a headache. you know, take some Tylenol. I recently bought migraine glasses which are obviously not sunglasses but they are pink colored lenses and they get a lot of comments. I have had people as me if they are sunglasses, though.

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      1. Yea it was wrong. But the fact that she tried (albeit quite naively) is more than you get from a lot of people. Of course the fact that you were a kid makes it difficult for you to give her a teachable moment. Now, as an adult, I have the opportunity to teach people about what helps and doesn’t not help me. But unfortunately one of the drawbacks of being a kid is that nobody listens to you.

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        1. That’s very true! I’ve learned so much from my experiences being chronically ill that I hope I can educated people on chronic illness one day. I thinks it’s great that you try to teach others about your situation and how they can help!

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          1. If I (we) don’t teach them…who will? Something I realized, before I began my blog (which was very recently.. end of December 2016), is that invisible illnesses are not only invisible but they are often unknown and misunderstood. Migraines do actually get some awareness but even still it is not always correct. Most people just assume all migraineurs are light sensitive and that’s it. My boyfriend thought that. He was right, I am VERY light sensitive..but I’m also auditory and olfactory (smell) sensitive too. He wasn’t aware those were symptoms of migraines because nobody talks about them. People who have chronic illness often don’t want to talk about it for one reason or another. And I was the same way. It just seemed easier…I didn’t want to burden people…it was embarrassing…

            Because my other chronic illness is Interstitial Cystitis aka Painful Bladder Syndrome which impacts my bladder and my Pelvic Floor…and my lady parts. Do I want to tell everyone my biz? Like how I have bladder spasms or like how I can’t pee, even though my urge and frequency deem I have to often, because my pelvic floor muscles are so tight that they won’t release to allow me to pee. Or because of that same issue, I can’t have sex at all. And I’m in physical therapy now where I get (seriously painful) manual internal physical therapy for my pelvic floor. Who wants to tell people that? not me. But the worse it became…the more people started to notice. My behavior changed and I started looking exhausted and sickly all the time. I stopped wearing makeup and tight waisted pants. Eventually I had to start telling people. So I decided to come out and start a blog.

            I just think it’s important for us to remember we can’t expect people who don’t have chronic illness to know what we need. It is up to us to educate them. And help them understand …that today I need a heating pad and a quiet dark room and full access to the toilet. But maybe tomorrow I need something else. Bringing awareness to invisible illness was kind of the goal of my blog..hence the name ..A Life Less Invisible. We have to be less invisible so that our illness(es) can be less invisible too.

            Sorry that was so long lol

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          2. I completely agree with you! I think there’s nothing to be embarrassed about when it comes to health issues, but that’s easier said than done. I have talked about my poop with way too many doctors and nurses, but I still feel SO awkward when the subject comes up. I saw something the other day about people getting botox in their vagina for vaginismus, I’m definitely not trying to tell you to try it, I’m just curious if you’ve seen anything about it for your condition? I hope physical therapy works for you!

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          3. well I think we know that talking to doctors about our personal stuff is way different than talking to our great aunt about it lol which is something I did recently.

            Botox seemingly is a miracle drug that works for everything… wrinkles? migraines? vaginismus? Interstitial Cystitis? It’s a jack of all trades …that botox. lol Have you tried it for anything? Wrinkles included lol you might be a bit young for that.

            I personally have not had botox for anything. Would I be willing to try it? yep. I’m at the point where I’m willing to try whatever to get to remission. But in my IC support group there are ALOT of people who are doing botox right now for their bladder and pelvic floor muscles. It is supposed to help with urge, frequency and spasms and who knows what else.
            PT is brutal. It is one of those…it has to get worse before it gets better thing. But I’m slowly seeing improvements.

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          4. I haven’t done botox yet, but I should be starting it this month for the migraines. Getting approved by insurance can be quite the process, I started just before Christmas and only was approved a few days ago. I can’t imagine how hard you’re PT must be, but I sincerely hope you continue to show improvements. I’m also at the “I’ll do anything as long as it helps stage,” so botox it is!

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