Saturday, September 5, 2009

30 Things About My Invisible Illness You May Not Know

1. The illness I live with is: Still a mystery. But some of the diagnoses I've picked up along the way include asthma, many various allergies, hypothyroidism, dysautonomia, inappropriate sinus tachycardia, anemia, degenerative disk disease, neuropathy, migraines, optic neuritis, hypersomnia, monoclonal gammopathy of undetermined significance (MGUS), undifferentiated connective tissue autoimmune disease (UCTD).

2. I was diagnosed with it in the year: Again, I'm still waiting for an official diagnosis, but I became incapacitated due to invisible chronic illness in 2007.

3. But I had symptoms since childhood for some of my invisible illnesses and had chronic pain since a 1995 on-the-job injury that left me permanently partially disabled.

4. The biggest adjustment I’ve had to make is accepting that this is what life is like for now, even if I continue to hope it isn't going to be like this forever.

5. Most people assume I'm healthy because nothing that's wrong with me shows on the outside.

6. The hardest part about mornings are getting going and/or motivated.

7. My favorite medical TV show is Grey's Anatomy!

8. A gadget I couldn’t live without is my laptop. My quality of life improved so much once I could be online whenever I felt up to it without having to sit at my desk, which I can't do for very long most of the time.

9. The hardest part about nights are falling asleep. When I try to relax and fall asleep, there's no distraction from all my aches and pains. I have trouble getting my body comfortable enough to sleep, and then I wake up frequently.

10. Each day, I take at least 10 pills & vitamins. (No comments, please)

11. Regarding alternative treatments, I get acupuncture weekly.

12. If I had to choose between an invisible illness or visible I would choose invisible, I think, because at least I have a choice sometimes of hiding my illness and acting like I'm "normal" and healthy for at least a little while. Sure, I pay for it later, but sometimes it's good to be able to pretend.

13. Regarding working and career, I miss feeling like a productive member of society. I can't even honestly call myself a stay-at-home mom anymore since Ellie's in full-time care because I can't manage taking care of her on my own.

14. People would be surprised to know how much pain I'm in on a daily basis.

15. The hardest thing to accept about my new reality has been that it might not be temporary.

16. Something I never thought I could do with my illness that I did was have houseguests and entertain them adequately.

17. The commercials about my illness: n/a

18. Something I really miss doing since I was diagnosed is taking care of my daughter by myself, taking her on fun outings and really being a part of her life.

19. It was really hard to have to give up being Ellie's primary caregiver.

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 ... oh, there's too many things for just one day! If I really can only have one day, I think I would spend it with Ellie and Scott at Disneyland, going on rides, enjoying Ellie's excitement and glee, not running out of energy way too quickly.

22. My illness has taught me to appreciate the little things.

23. Want to know a secret? One thing people say that gets under my skin is, "You look/sound great! You must be feeling a lot better!"

24. But I love it when people offer to do something that gives Scott a break from being both Ellie's and my caregiver, like inviting Ellie over for a long playdate or sending their teenager over to babysit for an afternoon.

25. My favorite motto, scripture, quote that gets me through tough times is "And this, too, shall pass."

26. When someone is diagnosed I’d like to tell them to find and/or create a support network. The chronic illness community on the Internet has been a lifesaver for me. Being sick is isolating, but the Internet lets us connect with other people with chronic illnesses, and for me at least, that really helps combat the sense of isolation as well as being a wonderful source of information.

27. Something that has surprised me about living with an illness is how quickly people forget about you once you're sick and don't get better in a typical time frame.

28. The nicest thing someone did for me when I wasn’t feeling well was find me a regular babysitter so my husband could get a few hours for himself each weekend. (Thank you, Mairi & MOMS Club!!)

29. I’m involved with Invisible Illness Week because I think the temporarily healthy and/or able-bodied don't realize that eventually we all develop health problems.

30. The fact that you read this list makes me feel cared about. Thank you!

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


Rae said...

I found your blog through the chronic invisible illness site. You have done an excellent job writing about your issues. I have posted there as well. Thank you for sharing. I just wanted to let you know that you are not alone in your struggle. There are many of us and we can band together to support one another. Best Wishes. Rae

Aviva said...

Thanks, Rae! That means a lot to me!
I don't know what I'd do without the Internet's chronic illness community.

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