I found this on http://chronicbabeclub.ning.com/. It was pretty insightful reading about others' experiences, many similar to my own, some different. Those who live with chronic/invisible illnesses certainly know the misunderstanding, and sometimes condescension, that comes with it. I feel things like this can really open up dialogue and create awareness. Here I go.
30 Things About My Invisible Illness You May Not Know
1. The illness I live with is: Rheumatoid Arthritis
2. I was diagnosed with it in the year: late 2001
3. But I had symptoms since: early 2001 (lucky early diagnosis).
4. The biggest adjustment I’ve had to make is: learning my limitations.
5. Most people assume: that I have osteoarthritis, that it's the same as the pain in their knee.
6. The hardest part about mornings are: getting out of bed and standing up.
7. My favorite medical TV show is: House!
8. A gadget I couldn’t live without is: hmm, does a laptop count as a gadget? If not, the electric can opener.
9. The hardest part about nights are: finding a comfy position and not getting stuck in it.
10. Each day I take 3 pills & vitamins (except on tuesday, when it's 13. And the needle I take every two weeks).
11. Regarding alternative treatments I: love massage therapy and acupuncture.
12. If I had to choose between an invisible illness or visible I would choose: this depends on my mood. It would be nice to have people automatically see my disability, but it must be difficult to have the potential of constantly being defined by it.
13. Regarding working and career: I can currently manage my full-time job (which involves a lot of sitting and breaks when I need it), but need to lie down when I get home.
14. People would be surprised to know: that I may not love my situation, but I have accepted it. Having RA is a part of my life now (a pain-in-the-behind part, but still).
15. The hardest thing to accept about my new reality has been: currently not being able to walk to work. It's so close! And getting pregnant. I just want to jump right into that. Alas, that cannot be done.
16. Something I never thought I could do with my illness that I did was: I once jogged for 25 minutes straight. I was high on happiness after that :)
17. The commercials about my illness: bug me like crazy. Yeah, it's just that easy for the pain to go away. Or the deformed/missing joints. Or the scars. Or the mobility aides.
18. Something I really miss doing since I was diagnosed is: dancing for hours :( Being able to touch my head/face like a normal person.
19. It was really hard to have to give up: dreams of things that I would be able to do in my life. Things that involve being physical: most yoga positions, learning how to rock climb. In general, just being physically strong and capable.
20. A new hobby I have taken up since my diagnosis is: blogging :)
21. If I could have one day of feeling normal again I would: Have a full, active day, and not pass out at the end of it.
22. My illness has taught me: to celebrate what I CAN do.
23. Want to know a secret? One thing people say that gets under my skin is: "but you're so young!" or, "yeah, I have a bad knee, too". I'm actually not that statistically young for RA. And I don't have "creaky" joints. My immune system is attacking and destroying many of my joints.
24. But I love it when people: tell me how strong they think I am. It's really sweet :)
25. My favorite motto, scripture, quote that gets me through tough times is: life is good.
26. When someone is diagnosed I’d like to tell them: that I am here to offer support and help and a shoulder to cry on, if they need it.
27. Something that has surprised me about living with an illness is: just how much daily pain I can take. I have to say, it's pretty impressive what I do anyway, while being in horrendous pain (not to brag, or anything ;) ).
28. The nicest thing someone did for me when I wasn’t feeling well was: so many things. Between my mom and my boyfriend (and many other folks), I have been taken care of to no end: cleaning, dishes, dressing me, washing my hair, travelling with me to surgery, cooking for me, literally carrying me into the house :), asking me if I am alright, and most importantly, asking me if I need anything :)
29. I’m involved with Invisible Illness Week because: I actually just became aware of this too late. Next year I'd like to get more involved.
30. The fact that you read this list makes me feel: really good. And hopeful :)
Find out more about National Invisible Chronic Illness Awareness Week and the 5-day free virtual conference with 20 speakers Sept 14-18, 2009 at www.invisibleillness.com