Friday, May 13, 2016

But you wouldn't want to do that with a migraine...

There are some assumptions that are common around me. That are made about me:

  1. Migraines are headaches
  2. I cannot be as sensitive to things as I am.
  3. If others cannot understand what is going on, it is necessarily psychosomatic
  4. I would definitely never want to do anything if I have a migraine or might have a migraine.

This is about that last one.

Some people whenever they have a migraine, curl up and hide from the world. That's okay. There's nothing wrong with that response. (And in fact I highly support and suggest it for many migrainers.) I don't. I don't see myself as having that option, because I can count the number of days on one hand where I was free from migraine associated symptoms in the last 5 years.

Still, when I speak to anyone, if they find out that migraines are a part of my life, people still immediately jump to that assumption. Migraines mean hiding. People who should have nothing to say will start lecturing me about how these clearly aren't migraines because I'm not going and hiding myself away. People whose job it is to help me develop skills, do so with the assumption that my migraines will never interfere.

Think about that. I can count the number of days in the last 5 years where once you count prodrome and postdrome I wasn't in a migraine. It is less than 5. And people who are working to help me with my disability are assuming - after I tell them about my migraines - that said migraines will never be relevant.

One of the things I've been doing lately is getting O&M. It took a lot of fiddly in order to get vocational rehab to be able to cover O&M as someone who is not legally blind, but with spending a significant portion of my time with dramatically reduced field of view and blurry vision inside that, it seemed important.

At every level of this process, people have assumed the most I'd do is get to a safe space, not continue to travel without sight. Even though I explicitly spoke about how my migraines affect my vision, and how I don't want to be limited by that. People view this as about only safety, not about me being possibly able to access this I'd like to do. That's the general assumption.

Sometimes people will pay attention to me avoiding triggers, but attempting to exist with a migraine, that's something that seems unspeakable. The label of migraine suggests that the accommodations I need aren't allowed, people don't do these things with migraines.

This assumption traps me. I can't say what is going on without more discussions. If I don't say anything, then people assume I'm not in a migraine. I have the choice of either allowing myself to be in more pain because of people ignoring what matters, or dealing with people requiring information to let me simply continue in my day.

This assumption exhausts me. Because I can't simply be as a migrainer. A chronic migrainer. Someone who knows that they're going to be in migraine. And who lives like that anyways. And who wants to be accommodated like that. And who it's always a fight, because, I don't exist.

This assumption is always there. Other people think they know best.

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