Saturday, June 7, 2014

If You Know One Person With Migraines...

The day 7 prompt is: Share what you've done to create change in how the world around you views migraine disease? What else would you do about this if you could?

I want the people around me to see that I am a whole person and not just the woman with all those migraines. To that end, I try to be a good example. I don't want to be seen as a victim or have people pity me so I try to be positive and leave the ugly details out when people ask me about how things are going. I try to find and point out the humor in my situation so people don't feel too weird around me. Still I want to be honest when they ask me how I'm doing. I may not give them the ugliest of details but I don't hide the fact that my migraines are still wildly out of control so I am honest about my limitations and the triggers around me. I try to stay very matter of fact when answering specific questions I receive and then try to steer the conversation to other matters.

The question is always in the back of my mind though: is this helping people to see that migraines don't define me or is it contributing to their disbelief? After all these years I'm still not sure but in my gut it feels like the most honest way to proceed. Ultimately, I don't know that anything I do or say is going to sway people to believe and understand or disbelieve and misunderstand. Depending on a person's bend, most any words or actions could be interpreted in a way that supports existing beliefs.

Sometimes I wonder if it would be helpful for my family and friends to have access to my blog. Maybe if I was just brave enough to let them really see behind the curtain all of them would get it... I see 2 things happening if I opened up my blog to all of them. One, I would have a panic attack and would stop sharing as openly as I do. Two, the people who really need to learn the facts are not likely to read more than one or two posts before getting bored and/or forgetting about it entirely. So my blog remains anonymous.

What I really wish everyone knew about migraines, besides the facts and statistics, is how varied the experience can be and how truly complicated it is. Most of what I say to others about my chronic migraines is in that vein.

When I used to work with adults with Alzheimer's Disease the saying was always, if you know someone with Alzheimer's then you known someone with Alzheimer's. There may be some hallmarks and some typical behaviors but it manifests in so many different ways you have to take each person as they are. I think the same thing is true with migraines. Just because you know someone with migraines doesn't mean you know migraines. We all just want to be heard, believed and seen as the individuals we are.

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