Tuesday, September 10, 2013

Thirty things about my invisible illness that you may not know

It's Invisible Illness Awareness Week.

So, here's the 30 Things About My Illness That You May Not Know:

1. The illness I live with is: Chronic Lyme/fibromyalgia/chronic fatigue syndrome

 2. I was diagnosed with it in the year: 2008

3. But I had symptoms since: 2007

4. The biggest adjustment I’ve had to make is: The end of my marriage

5. Most people assume: That I’ll get well eventually.

 6. The hardest part about mornings are: Waking up exhausted. Every day.

 7. My favorite medical TV show is: House

8. A gadget I couldn’t live without is: iPod, for audiobooks when I have trouble with reading comprehension

 9. The hardest part about nights are: Sleeping alone after so many years

10. Each day I take 22 pills and vitamins. And I’m not currently treating the Lyme. (No comments, please)

11. Regarding alternative treatments I: Have found some incredibly valuable, and others have been a complete waste.

12. If I had to choose between an invisible illness or visible I would choose: Visible, because then people wouldn’t doubt me.

13. Regarding working and career: At 35 I have to figure out how to live and work and what I’m going to do post-divorce, and I’ve got no clue how to balance my disability with earning money.

14. People would be surprised to know: I no longer regret getting sick.

15. The hardest thing to accept about my new reality has been: Losing my marriage.

16. Something I never thought I could do with my illness that I did was: Go on long-ish hikes again.

17. The commercials about my illness: don’t exist.

18. Something I really miss doing since I was diagnosed is: Not worrying about what surprise symptom the next day will bring.

19. It was really hard to have to give up: The illusion that I was in control of my life.

20. A new hobby I have taken up since my diagnosis is: Photography

21. If I could have one day of feeling normal again I would: Cry, because it would feel like a horrible tease.

22. My illness has taught me: People can surprise the fuck out of you, in both good and bad ways. "Friends" might abandon you, but then other people can amaze you.

23. One thing people say that gets under my skin is: You don’t look like you’re in pain. –OR- You should use natural remedies instead of opiates for your pain. That’s what I would do.

 24. But I love it when people: Encourage me to gently test what I think my limits are, while respecting it when I fail.

25. My favorite motto, scripture, quote that gets me through tough times is: I am much stronger than you think I am.

26. When someone is diagnosed I’d like to tell them: I will listen to you and help where and when I can.

27. Something that has surprised me about living with an illness is: How impossible it is to describe to someone “normal.”

28. The nicest thing someone did for me when I wasn’t feeling well was: Come over to my hotel room with coffee and freshly baked bread to make sure I hadn’t self-harmed.

 29. I’m involved with Invisible Illness Week because: Fuck invisibility.

30. The fact that you read this list makes me feel: Heard.


Of interest may be my response to the same survey back in 2009, found here.