Well I've done it. I found an honest-to-goodness support group online and I joined. Even posted. This is big for me cause I'm a lurker usually. I'm just having such a hard time with this whole chronic disease thing. Especially this whole chronic-but-you-look-and-sometimes-act-normal-disease. Having grown up around people who really get into the "Sick Role," I can't stand the pity party (although I admit to whining about cramps... but they're cramps and totally unfair!). I don't want a pity-party. I want understanding. When I say it feels like my brain is trying to push out of my left ear... I'm not exaggerating. It really does feel that way. And yes. On most days we would have a mess if I were to have an ice pick and a spigot lying around. Ok... the spigot was going a bit too far... but I have seriously had ice pick ideation. McGyvering a drain with a pen casing. Something that will make this go away. I digress.
There is someting powerful in "me too." I need community, and with only 1 in 100,000, I might only be able to find 6 or 7 people to befriend in Indy. Well, I stumbled across Daily Strength when I was research shunt placement. It has support groups for everything, including IIH. There was a message board about how people are coping with employment and dealing with the disease. There was this one lady who is a middle school teacher. She has trouble keeping up with reading the assignments (that sounded familiar), focus problems (that too), but she also talked about how she can't remember her students' names anymore. How sad. Just about everyone who posted didn't work and talked about how they couldn't imagine how someone would be able to hold down a job. One guy said he can't even climb the stairs in his house, let alone work. The climbing the stairs comment made me feel better. Maybe now I won't feel so damned alone.
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