National Invisible Chronic Illness Awareness Week

In honor of National Invisible Chronic Illness Awareness Week (Sept. 14-20, 2009), I have filled out a meme that is making its way around blogs, email, Facebook, etc. (You can read about the meme and find links to other people’s responses here.) Thanks for reading it!

30 Things About My Invisible Illness You May Not Know

1. The illness I live with is: Rheumatoid arthritis and Sjogren’s syndrome.

2. I was diagnosed with it in the year: 2007.

3. But I had symptoms since: the summer of 2006 – or at least that’s when the RA-specific symptoms appeared. I had all sorts of other issues for years before that, but still don’t really know if they were related.

4. The biggest adjustment I’ve had to make is: giving up my full-time career as a classical pianist.

5. Most people assume: that I am fine, since I don’t tell many people about my illness. Since they don’t know that I take prednisone, some people probably think I’ve really let myself go since I had my baby. (I gained 40 pounds when I started taking it.)

6. The hardest part about mornings are: getting out of bed, and then getting myself moving.

7. My favorite medical TV show is: Scrubs! (I know, not exactly a serious one… I don’t really watch the other kind.)

8. A gadget I couldn’t live without is: my husband! (Kidding – sort of. He does most things for me that I can’t.) My disabled parking permit is another one – not exactly a gadget, but I couldn’t do without it.

9. The hardest part about nights are: when insomnia hits during a flare.

10. Each day I take __ pills & vitamins: 20 on an average day, plus an inhaler drug twice a day; extra pills a few days a week, and an infusion drug every 8 weeks.

11. Regarding alternative treatments I: prefer at this time to use them as complementary medicine – I went without traditional meds for too long, got much worse, and suffered damage. I do think they are very useful partners for traditional meds, though, and believe that they do work well for some people on their own. I try to respect the choices of others and appreciate it when they do the same for me.

12. If I had to choose between an invisible illness or visible I would choose: The answer to this question depends on how I am feeling. Most of the time I am grateful that I can choose to hide it, but sometimes I wish it were more obvious so people would help me more. I also wish my illness were visible when I need to use my disabled parking permit – it makes me feel incredibly self-conscious and even guilty to look perfectly fine and park in those spots.

13. Regarding working and career: I will continue to do the work I love for as long as I am able, but have had to slow down considerably, and am constantly seeking new ways to do it.

14. People would be surprised to know: exactly how serious RA can be, and how many seemingly-unrelated problems pop up around it. I expected joint pain, but was unprepared for things like crushing fatigue, low-grade fevers every afternoon, skin problems, lung problems, bladder problems, non-healing wounds, infections… the list continues to grow.

15. The hardest thing to accept about my new reality has been: the fact that I can’t just pursue my musical dreams full-bore like I used to – there are limits now, and I have probably already reached the highest point in my career.

16. Something I never thought I could do with my illness that I did was: continue to perform as much as I have.

17. The commercials about my illness: piss me off a bit; they really underplay what the disease is about, and make people ask me, “Why don’t you just take such-and-such a drug, and you’ll be all better?” (Especially annoying when it’s a drug I already take, or one that isn’t meant for my condition.)

18. Something I really miss doing since I was diagnosed is: playing the piano for hours and hours a day. (Are you sensing a theme here?)

19. It was really hard to have to give up: Irish dancing – too hard on the knees and feet now. I also really miss my dancer friends, who I don’t see often anymore.

20. A new hobby I have taken up since my diagnosis is: songwriting – that’s what prompted this blog. Oh, and I guess blogging! :-) I also keep trying to take up crochet, but it hasn’t quite stuck yet.

21. If I could have one day of feeling normal again I would: Well, I sometimes DO get days of feeling normal, and they are wonderful – the problem is that I can’t predict when they will come, and so I am sometimes paralyzed with indecision about what to do and therefore waste them. Maybe I should give more thought to this question, and have a plan ready!

22. My illness has taught me: deep compassion for other people going through difficulties.

23. Want to know a secret? One thing people say that gets under my skin is: how much of a saint my husband is. I completely agree that he is, and often say it myself – but it leaves me feeling like a giant burden, or something damaged. I like to think that he gets something out of being with me, too!

24. But I love it when people: ask me how I am doing and seem to be really interested. I also love it when they relate to me like basically the same person I was before.

25. My favorite motto, scripture, quote that gets me through tough times is: I am still working on this one.

26. When someone is diagnosed I’d like to tell them: that it will be okay, and that I’m here anytime they need to talk about it.

27. Something that has surprised me about living with an illness is: how it’s sometimes possible to turn the bad things into good things – for example, I always feel terrible on the day I take methotrexate, and I have turned it into a day to relax, watch light-hearted movies, read silly books, and slow down. Another example – the songwriting I have begun to do.

28. The nicest thing someone did for me when I wasn’t feeling well was: when my mother flew out and spent a month taking care of me and my family when I was going through an especially rough patch. Also, the million small kindnesses my husband performs every day. One example – he dresses our baby in an “I Love Mommy” onesie when I have to have my infusions, or when I’m sick from methotrexate.

29. I’m involved with Invisible Illness Week because: I want other people to know that they are not alone.

30. The fact that you read this list makes me feel: that you care enough to want to know what I am experiencing – thank you!

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2 Comments

  1. WarmSocks says:

    Well done. Thanks for sharing

  2. mallen says:

    Thanks for sharing. I have very simular feelings about my RA. Especially #12. I don’t want to always look sick, but sometimes it would be helpful, so that people don’t expect me to act like a normal healthy 35 year old.

    Hope things are well with you…

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