30 Things You May Not Know About My Invisible Illness

Today kicks off Invisible Illness Awareness week.

All week long I will be blogging about my life as a spoonie, sharing my story and tips I’ve learned along the way. Today’s post is a meme being hosted by Invisible Illness Awareness Week.

30 Things You May Not Know About My Invisible Illness

1. The illness I live with is: Rheumatoid Arthritis (also IBS, Depression, and Anxiety)
2. I was diagnosed with it in the year: 2012
3. But I had symptoms since: It’s hard to say. I was sick often as a child, but we’re unsure if it was related. I’ve suffered from Depression and Anxiety since I was a teen.
4. The biggest adjustment I’ve had to make is: I can no longer work outside the home.
5. Most people assume: I’m lazy or that I don’t want to work. Or that I’m making it all up.
6. The hardest part about mornings are: Waking up. Even if I’m awake physically, my mind takes nearly as long to wake up as my joints take to loosen up.
7. My favorite medical TV show is: Hmm. I don’t think I have one.
8. A gadget I couldn’t live without is: My iPhone. It allows me to connect to the outside world even when I can’t hardly move from my couch.
9. The hardest part about nights are: Restlessness. There are nights that I can’t get comfortable.
10. Each day I take 10 pills & vitamins.
11. Regarding alternative treatments I: Try yoga for both exercise and the relaxation it provides.
12. If I had to choose between an invisible illness or visible I would choose: Although there are days I wish people could see what I live with, I’m vain enough that I wouldn’t want to “look sick.”
13. Regarding working and career: I sell my crafts when I can, and volunteer occasionally. But no formal work to speak of. Not anymore.
14. People would be surprised to know: That most days I can forget that I’m sick. I’ve adjusted to my new life.
15. The hardest thing to accept about my new reality has been: The limitations. I used to be pretty spontaneous. Now I live by a routine.
16. Something I never thought I could do with my illness that I did was: I made new friends.
17. The commercials about my illness: Frustrate me. They’ll never accurately portray the disease.
18. Something I really miss doing since I was diagnosed is: I can no longer braid my hair.
19. It was really hard to have to give up: Milk. When RA triggered IBS, I became unable to tolerate real milk.
20. A new hobby I have taken up since my diagnosis is: I’ve rekindled my love of crafting.
21. If I could have one day of feeling normal again I would: I’d go on a long walk and eat a huge ice cream sundae.
22. My illness has taught me: That I have more strength than I ever could have imagined.
23. Want to know a secret? One thing people say that gets under my skin is: That I’m giving up or giving in to my disease when I follow doctor’s orders to rest or reduce activity.
24. But I love it when people: Surprise me with thoughtful ways of showing they care.
25. My favorite motto, scripture, quote that gets me through tough times is: Give me a place to stand and I will move the earth. (Archimedes)
26. When someone is diagnosed I’d like to tell them: It’s not as scary as it seems at first. Believe it or not, you’ll find a groove.
27. Something that has surprised me about living with an illness is: How many different side effects there are.
28. The nicest thing someone did for me when I wasn’t feeling well was: Brought me a care basket with fuzzy socks and a fleece robe.
29. I’m involved with Invisible Illness Week because: Awareness is the key to understanding. And understanding is the key to a cure.
30. The fact that you read this list makes me feel: Like maybe I’ve made a difference. If I can help one person understand, then I have.

**Over at Spoons 4 Spoonies we have a BOGO to help raise awareness. Visit our Facebook or email us at spoons4spoonies@gmail.com for more details.


One thought on “30 Things You May Not Know About My Invisible Illness

  1. I love you. When I first flared with ulcerative colitis, I got some bizarro side effect called “serionegative arthritis”, aka horrible joint pain. So I have the barest of senses for what you go through, and I am awed by your bravery.

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