30 Things about My Invisible Illness…

… things that you may not know.

1. The illness I live with is: chronic fatigue syndrome/fibromyalgia; functional GI disorder; Ehler’s-Danlos syndrome, Type III; major depressive disorder

2. I was diagnosed with it in the year: 2009

3. But I had symptoms since: 2004

4. The biggest adjustment I’ve had to make is: I had to give up playing piano for hours a day

5. Most people assume: that they are more invested in my healing than I am

6. The hardest part about mornings are: getting out of bed

7. My favorite medical TV show is: none; I hate thinking about medicine when I don’t have to

8. A gadget I couldn’t live without is: telephone— it keeps me connected to the world

9. The hardest part about nights are: sleeping, especially through pain, depression, and insomnia

10. Each day I take __ pills & vitamins. (No comments, please): eight

11. Regarding alternative treatments I: have tried almost every one there is because my parents are big fans of alternative medicine; I’ve found a few things that work for me, particularly chiropractic care. I’m all for people pursuing these, but I’m not interested in trying anything else.

12. If I had to choose between an invisible illness or visible I would choose: invisible. It means that sometimes people see me for who I am and not for my illness.

13. Regarding working and career: I know that I’ll never be able to work full-time (unless something changes) but working gives me something tangible to work toward and a community to be a part of.

14. People would be surprised to know: My Christian faith is a major part of my illness journey. In some ways, it keeps me going. In other ways, it raises new questions, and I find myself wondering and asking why things are the way they are and what I’m supposed to do.

15. The hardest thing to accept about my new reality has been: How much about my life is consumed and influenced by my illness, everything from the activities I participate in to the relationships I have with other people to the things I know and am aware of.

16. Something I never thought I could do with my illness that I did was: be a part of so many of my friends’ journeys. From my room, I’ve been a support to friends in Bible school, on missionary trips, in medical school, in law school, in graduate school, in newly engaged/married life, and the like.

17. The commercials about my illness: I’m not sure; I don’t pay that much attention.

18. Something I really miss doing since I was diagnosed is: being physically present at big events like graduations, weddings, birthdays, etc.

19. It was really hard to have to give up: being defined by always being on time, producing the best work, being super reliable.

20. A new hobby I have taken up since my diagnosis is: quilting. I love producing something tangible, and I can do this in the middle of the night if I can’t sleep. Plus, there’s a great online community of quilters. And people can appreciate my talent and work in quilting.

21. If I could have one day of feeling normal again I would: I’m not sure. I don’t tend to think of being sick as necessarily “abnormal”. I just strive to live every day to its fullest.

22. My illness has taught me: that people are challenged by different things and that it’s God’s mercy that we are the way we are.

23. Want to know a secret? One thing people say that gets under my skin is: Just think. If you had what ____ had, it would be so much worse. Really? And what ground do you have to say that? Do you know what it’s like to have what _____ has or what I have?

24. But I love it when people: take the time to listen to me and aren’t scared because they can’t relate.

25. My favorite motto, scripture, quote that gets me through tough times is: “it matters to Him concerning you”

26. When someone is diagnosed I’d like to tell them: it will take time to adjust. Give yourself time. It’s a chronic illness, which means that you don’t have to figure it all out right away. And things will get better. I’m here for whatever you need whenever you need it.

27. Something that has surprised me about living with an illness is: that the meaning of life has little to no relation to whether or not I’m healthy

28. The nicest thing someone did for me when I wasn’t feeling well was: mailing me a thinking-of-you package.

29. I’m involved with Invisible Illness Week because: I want to encourage other people.

30. The fact that you read this list makes me feel: that I matter & that matters to you.