Friday, September 30, 2011

Recognition is essential for patients

I'm really looking forward to Ellen's series on, Expert Answer: When friends & family don’t understand migraine. From the introduction: “I am a breast cancer survivor. Compared to my experience with chronic Migraine, breast cancer was a breeze. All the information is out there. Everyone understands cancer and its treatment and has compassion for the patient. The stigma of it is gone. The therapy ends eventually – there is a light at the end of the tunnel. The pain of the disease is treated vigorously. Migraine is nothing like breast cancer. The pain is so much worse and usually undertreated, nobody understands the disease or the patients, the stigma is overwhelming and there is no light at the end of the tunnel because our disease doesn’t go away.”

I had a funny moment out with my friends at coffee. We had a new person introduced to our group, who happened to be getting his PhD in neuroscience. I asked him if he understood the pituitary, and confirmed it. I told him what I had and he expressed genuine alarm and concern. He launched into a series of questions that I demurely answered for him (just the anterior pituitary, not the disease that makes you thirsty all the time, thank God). But it wasn't so much this gentleman's reaction that was so amazing. What was amazing is that all my other friend's faces had fallen to the floor.

They hadn't known just how serious it was. These were folks who only knew me A.D. (after disability). And the more this guy asked me questions, and the more impressed he grew, the more I could feel the respect for me in the room grow.

I work really hard to make this look good. I can't do it all the time every day, but I can pull off for an afternoon. I can pull it off for doctors appointments. I've learned a lot of streamlining techniques for chores through the years. I'm like a race horse: I'm good in short, powerful bursts. But then I need lots of rest. They don't see the struggle in the down time. I hide it. Not that I'm ashamed. I just know it's a lot to handle, and not everyone is up to that. It's hard to be a caregiver. Hallmark doesn't have a card section for: "Get well, maybe?" As a society, we really don't know how to handle it.

I embrace that I don't look as sick as I am. I've learned not to blame anyone for not understanding. It never helps to try to explain. It looks like boasting. It doesn't help to get angry. That just makes me miserable and difficult to be around. It sure doesn't help to sulk or get involved in self-pity. Yeah, I've got one hell of a disease. How about them Cardinals? What about that epic night in baseball??

I wanna get credit for how well I'm doing, not for how awful I've got it. So I look forward to what this series is going to say. Even at this point in the game, I can still use all the tips and tricks I can get communicating my disease to others.

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