Invisible Illness Week is coming up soon, and as part of that I’ve decided to participate in the 30 Things About My Invisible Illness You May Not Know. Before I looked at the list I figured this would be good for new readers, but as I read through the insightful items, I realize long-time readers might learn something new, too. So here we go….
1. The illness I live with is: Undifferentiated Connective Tissue Disease, Hashimoto’s Disease, Hypothyroid, Mild Adrenal Fatigue, PCOS, IBS, Raynaud’s
2. I was diagnosed with it in the year: In the order I listed them, 2003, 2010, 2004, 2012, 2005, 2001, 2004
3. But I had symptoms since: 1993, 2000, 2000, 2011, 1995, 1994, 1994
4. The biggest adjustment I’ve had to make is: Missing out on life – missing social events, spending less time with friends, less dating, having to leave my job
5. Most people assume: I’m a typical, healthy 30-something
6. The hardest part about mornings are: Becoming awake. Sometimes my body wants to stay asleep.
7. My favorite medical TV show is: None at the moment.
8. A gadget I couldn’t live without is: My laptop. It is my connection to family and friends when I can’t leave the house, not to mention a great source of medical information.
9. The hardest part about nights are: The lonliness
10. Each day I take __ pills & vitamins. (No comments, please) 47
11. Regarding alternative treatments I: I do what works and avoid what doesn’t work.
12. If I had to choose between an invisible illness or visible I would choose: I’ve never had a visible illness, so I can’t fairly answer that.
13. Regarding working and career: I wish I had the option of working right now.
14. People would be surprised to know: I’m in pain every single day.
15. The hardest thing to accept about my new reality has been: I don’t know how I’ll feel 1 year, 3 years, 20 years from now. I could be better, could be worse, but I can’t know.
16. Something I never thought I could do with my illness that I did was: Go on a picnic without fear about the lack of bathrooms.
17. The commercials about my illness: Don’t exist.
18. Something I really miss doing since I was diagnosed is: Riding a bicycle.
19. It was really hard to have to give up: Dreams of having children.
20. A new hobby I have taken up since my diagnosis is: Knitting. The movement keeps my finger joints looser.
21. If I could have one day of feeling normal again I would: Have a huge party with everyone I love, and be with them the entire day without having to stop and rest.
22. My illness has taught me: To appreciate the things that I do have.
23. Want to know a secret? One thing people say that gets under my skin is: “I could never give up gluten/dairy/other food.”
24. But I love it when people: Offer to make plans accessible for me, without making a huge deal about it.
25. My favorite motto, scripture, quote that gets me through tough times is: “I may not be there yet, but I’m closer than I was yesterday.”
26. When someone is diagnosed I’d like to tell them: “Don’t rush to accept this. You’ll accept it in your own time. It might take a while, but you’ll get there. Just take it one day at a time.”
27. Something that has surprised me about living with an illness is: My new “normal” feels so natural sometimes, until I realize how far off I am from where I should be.
28. The nicest thing someone did for me when I wasn’t feeling well was: Spend time with me but without discussing how lousy I felt; we just talked and it was a great distraction.
29. I’m involved with Invisible Illness Week because: I think it’s incredibly important to educate people about what we live with.
30. The fact that you read this list makes me feel: Cared about.