After months of neglect, I’m dusting off Ye Olde Blog to participate in Invisible Illness Week. I heard about it through a migraine e-list that I’m on. I guess it resonated with me because I spent Friday afternoon and most of Saturday with migraine.
An invisible illness is one where you don’t “look sick”. This has a wacky effect on the people around you. If I see something you can’t see, you might figure I’m imagining it, and you might be right. But if I feel something that you can’t see, you might also figure that I’m imagining it. That adds an extra burden to those with invisible illness. Not only are you in pain or otherwise debilitated, but now people think you’re lazy, dishonest or neurotic, too. I’ve had people express concern if they hear me sniffle, yet tell me that a painful, debilitating genetic neurological disorder (which is what migraine is) is (a) psychosomatic, (b) something I could easily cure by giving up sugar or wheat or doing tai chi or whatever they read in some magazine at the dentist last week.
So here’s my pass at the Invisible Illness Meme. I think some of the questions are dumb, but hey, I didn’t write them.
1. The illness I live with is: migraine.
2. I was diagnosed with it in the year: 1981
3. But I had symptoms since: 1971
4. The biggest adjustment I’ve had to make is: never knowing when I’m going to lose time to migraine and have to rearrange my plans.
5. Most people assume: that I’m in pain, and they’re right.
6. The hardest part about mornings are: most mornings are fine, but waking up with a migraine is no fun. It means taking meds and going back to bed. I can’t always start my work day at a consistent hour.
7. My favorite medical TV show is: Um, I don’t watch a lot of TV, but Scrubs is funny.
8. A gadget I couldn’t live without is: my visor. I’m extremely sensitive to light even when I don’t have a migraine, and bright or flickering lights can trigger them.. I can’t spend time in a room with fluorescent lights or a ceiling fan without wearing my visor.
9. The hardest part about nights are: waking up in the middle of the night with migraine, and having to go downstairs and eat crackers to cushion my stomach against the meds.
10. Each day I take a lot of pills & vitamins. (No comments, please)
11. Regarding alternative treatments I: believe the alternative medicine industry is filled with quacks. That said, there are a lot of excellent alternative treatments. I do yoga and meditate daily; valerian root is part of my migraine regimen. But after years of trying alternative treatments I have a lot of respect for double-blind, placebo based studies.
12. If I had to choose between an invisible illness or visible I would choose: Invisible. There are plenty of times when I’ve bludgeoned my way through a day in agony, with nobody around me any the wiser.
13. Regarding working and career: Working for myself allows me to control my hours and the lighting in my workspace. This has made an enormous difference.
14. People would be surprised to know: migraine is not just a headache. And although the headaches with migraine can be incredibly severe, a migraine episode can also not involve a lot of actual head pain. But think about having a fever and being nauseous: you’re not in pain, but you’re still very sick. So although I may not have severe pain, I feel very sick if I’m not lying completely still with my eyes closed in a dark room.
15. The hardest thing to accept about my new reality has been: losing time to illness.
16. Something I never thought I could do with my illness that I did was: continue to hike even though hiking often triggered severe migraines. Spending time in the wilderness was too important to me, though, that I learned how to hike and to behave post-hike that at least kept the migraines from being too awful.
17. The commercials about my illness: are not something I’m aware of.
18. Something I really miss doing since I was diagnosed is: being a child. I’ve had these since I was 14 and I’m 53 now.
19. It was really hard to have to give up: being able to run around on a hot day.
20. A new hobby I have taken up since my diagnosis is: again, I’ve had these so long that there aren’t any hobbies I’ve taken up in reaction to them. I did used to play guitar when I had them, though, because it was the only thing I could do with my eyes closed.
21. If I could have one day of feeling normal again I would: I feel normal most days. But a week without a migraine would be swell.
22. My illness has taught me: awareness of my body.
23. Want to know a secret? One thing people say that gets under my skin is: “Oh, you could cure them if you would just —”
24. But I love it when people: Say “That’s gotta suck.”
25. My favorite motto, scripture, quote that gets me through tough times is: I don’t have one that relates to this. But I comfort myself knowing I’ll probably feel better around 8:00 at night. For some reason my migraines tend to dissolve mid-evening.
26. When someone is diagnosed I’d like to tell them: Read all the current literature you can, because the understanding of migraine has changed drastically in the last 40 years, and not all doctors and nurses are up on the latest. Read about common triggers and track yours.
27. Something that has surprised me about living with an illness is: how it’s possible to be very healthy, and yet still lose time to illness.
28. The nicest thing someone did for me when I wasn’t feeling well was: take me to the emergency room when I had an especially severe episode.
29. I’m involved with Invisible Illness Week because: if one person learns something about this and makes one less moronic, ignorant, insensitive statement to someone who is suffering, then this will have been worth my time.
30. The fact that you read this list makes me feel: a little embarrassed. But at least now you know why I wear those stupid visors all the time.