Failure: Empathy, not advice, for invisible illness

[topaznebula]

Having invisible illness is a certain kind of hell.

If you have one, you know what I mean. Depression, anxiety, chronic pain, migraines, the list goes on.

Last week, I had 3 migraine attacks over 5 days. I fell behind in work and school, missed important meetings. It was horrible, and I’m exhausted.

But I don’t get much sympathy for what most

Comments

[negativecon]

I was just talking about your migraines tonight. (Uh... hope that isn't weird? I wasn't like... getting personal, just mentioned you having particularly terrible ones.)

I struggle most with "hearing" light during my (now thankfully far less frequent) migraines. I'd never put it that way, but when I read it I was like, "Oh THAT'S what that is!" It's so effing disconcerting, but it's also something I deal with during headaches I wouldn't otherwise class as migraines because I didn't think they were severe enough. I guess I'd do well to research this more, myself.

[topaznebula]

There are definitely levels of migraine severity

[negativecon]

"it’s just that if I’m able to function, I don’t recognize it as a migraine.... I just think of that as a killer headache, because my migraine attacks are so severe

[static_abyss]

This sounds awful. I can't imagine what that must be like. I am one of the people who only has migraines at most for 48 hours and then they're done. I deal with nausea and sole dizziness, but I can exist for the most part, and I can sometimes stop them from happening if I act fast enough and down some OTC meds.

[roina_arwen]

Thank you for sharing your experience- I don’t think I’d be able to deal with that sort of intense pain and sensory confusion, and I’m sorry that you - or anyone else - has to do so. ❤️

[sunouttomorrow]

I've only had a very few migraines in my life, experiencing the pain, nausea, and sensory sensitivity; but only once or twice do I remember seeing the aura and having aphasia. I can't imagine having them frequently. It must be excruciating and debilitating. I haven't had one in a very long time though (I feel like I should knock on the proverbial wood now), and I don't know why they stopped.

[karmasoup]

It seems like the real failure for anyone suffering as you are is the lack of a scalable lexicon related to this condition. Everything related to migraines are simply referred to as migraines, and clearly, that's wrong

[topaznebula]

Thank you for such a thoughtful response, and for recognizing that a huge part of the difficulty in dealing with this On an emotional level, is that we don’t have the language to express the scale of quite different magnitudes of what are all referred to as migraines. And this, people end up lacking empathy or judging, when their experience of a migraine may actually be a bad headache, whereas someone else’s experience may be debilitating like yours and your husbands, or mine.

That’s interesting that you’ve had TBIs, I’ve also had several concussions (due to my over-confident sports activity as a teenager), and wonder how these might have impacted my migraines. I had migraines long before my brain injuries, but have noticed my aphasia after migraines and in everyday life has become progressively worse since the injuries.

Thanks again for such a thoughtful comment, I really appreciate it and enjoyed reading your reply.