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National Invisible Illness Week

September 14, 2009 Leave a comment Go to comments

I’m blogging for National Invisible Illness Week.  I think the organization sponsoring it is Christian, and I am not, but I think it’s an important cause.  To try to spread awareness and understanding about illnesses like fibromyalgia they’ve come up with this internet meme, “30 things about my invisible illness”. So I thought I would try it.

30 Things About My Invisible Illness You May Not Know

1. The illness I live with is: Fibromyalgia
2. I was diagnosed with it in the year:2004
3. But I had symptoms since: I was in my 20’s
4. The biggest adjustment I’ve had to make is:not being able to do the things I want when I want.
5. Most people assume:it’s not as debilitating as it is.
6. The hardest part about mornings are: you never know what the morning will bring as far as pain and stiffness.
7. My favorite medical TV show is: none.
8. A gadget I couldn’t live without is:my computer!
9. The hardest part about nights are: ready for bed at 7:30.
10. Each day I take __ pills & vitamins. (No comments, please)11 if I don’t get a migraine
11. Regarding alternative treatments I:am still exploring.
12. If I had to choose between an invisible illness or visible I would choose:neither, duh!
13. Regarding working and career: I’ll never be able to work full time again.
14. People would be surprised to know: How hopeless I have felt at times.
15. The hardest thing to accept about my new reality has been: No good treatment options.
16. Something I never thought I could do with my illness that I did was: Go on this diet!
17. The commercials about my illness: irritate the hell out of me.
18. Something I really miss doing since I was diagnosed is: driving any distances.
19. It was really hard to have to give up: making pots.
20. A new hobby I have taken up since my diagnosis is: growing african violets
21. If I could have one day of feeling normal again I would: get pretty frigging depressed when it was over!
22. My illness has taught me: to know myself better.
23. Want to know a secret? One thing people say that gets under my skin is: Oh, I’m tired, too.
24. But I love it when people: just try to understand without pity or patronizing.
25. My favorite motto, scripture, quote that gets me through tough times is:It’s not a motto, scripture or quote…it’s my husband.
26. When someone is diagnosed I’d like to tell them: To try everything and see what helps.
27. Something that has surprised me about living with an illness is: how it gets to me mentally.
28. The nicest thing someone did for me when I wasn’t feeling well was: keep loving me no matter how screwed up I felt.
29. I’m involved with Invisible Illness Week because: There are so many people with invisible illnesses that we don’t even suspect.
30. The fact that you read this list makes me feel: Important 🙂

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  1. September 14, 2009 at 8:33 am

    I am the same as you in so many ways. I too feel so hopeless at times, quite often. The worst part is that a lot of Doctor’s and people don’t think what we have is real or understand how bad we fell because we look healthy.

    You made me smile at the end when you said, “The fact that you read this list makes me feel: Important”, I feel the same way because people read my blog as well. I do it as a form of therapy and I hope it helps other by not feeling so alone with their chronic illness. I know it really helps me.

  2. September 14, 2009 at 8:34 am

    Oh, I also just added your blog to my blogroll.

  3. jp
    September 14, 2009 at 12:47 pm

    Thanks for the link back, Tricia. I’ll put your blog on my links, too.
    Jacki

  4. September 15, 2009 at 7:35 am

    we are never alone but I think feeling that causese us to reach out to others. I haven’t loked too deeply into the invisisble illness site yet but I was wondering if mental illness is also under invisisble category.

    I once went to a group home to look for a job and was shown all around the place by a very engaging woman. I thought, “Wow. I could work here! How fun!” Turned out that the woman that was ready to hire me was a resident.

    I have a mental illness and sometimes I see people suddenly realize that I am not quite “right in the head!” of course that perception may be my paranoia coming out.

    When I don’t feel well, I tend to want to offer my illness as an excuse for not feeling up to par. I shun that tendency as much as possible and have learned to “act as if”, which is an old Alcoholics Anonymous trick. Which by the way could be an invisible illness except when…………………….

    No wonder that as a child (and now) I wish I could be invisible !!

    and there ya have it.

    well onward mighty Warriors of the weary war. I applaud all your efforts and will pray for you. Whenever you feel over-run by disease/s, pray for those who are suffering along with you. Courage!

    • jp
      September 15, 2009 at 6:17 pm

      I think mental illness is a BIG one, sam. It’s still got such a negative connotation; as if it was a character flaw or a weakness or something. We don’t think people with cancer should just get a grip or pull themselves up by their bootstraps. It’s b.s. to think differently about mental illness.

      I think it’s a good thing there is a lot of research into the biological causes of mental illness. Maybe it will help other people to understand and be a little more compassionate about the struggle we go through with mental illnesses.

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