30 Things About My Invisible Illness You May Not Know
1. The illness I live with is: Crohn's Disease / Inflammatory Bowel Disease2. I was diagnosed with it in the year: 1993
3. But I had symptoms since: 1991
4. The biggest adjustment I’ve had to make is: accepting the things I cannot change, the foods I cannot eat, and the energy I will not have!
5. Most people assume: that if I look fine on the outside, everything is peachy keen!
6. The hardest part about mornings are: zero energy and trying to stay away from caffeine simply
doesn't work. Something's gotta give!
7. My favorite medical TV show is: When I was first diagnosed in 1993 at the age of 13, I will never forget laying in bed drinking ginormous jugs of colonoscopy prep while watching this brand new show called ER! It will always be my fave :)
8. A gadget I couldn’t live without is: a map feature on my phone, or GPS - constantly traveling, and NO sense of direction!
9. The hardest part about nights are: the fact I'm exhausted by 8pm every night
10. Each day I take 35 pills & vitamins. I have very little patience for normalies (if I call us Crohnies, I feel like I should call normal people normalies) who whine for days about taking a calcium supplement or occasional pill.
11. Regarding alternative treatments I: am a huge believer!! Yoga, in particular. I am trying out acupuncture and looking to start a meditation practice.
12. If I had to choose between an invisible illness or visible I would choose: I believe God provides each of us with challenges and opportunities in life. The trick is learning to overcome and developing the right attitude no matter your challenges.
13. Regarding working and career: I am a firm believer that anyone can accomplish their dreams, regardless of their invisible or visible illnesses. I challenge myself and follow my dreams. I know you can as well! I will never forget being visited by a young twenty-something Crohnie nutritionist when I was 13 and newly diagnosed. She gave me hope!
14. People would be surprised to know: how much my disease is a central part of my life. I don't like to talk about it, and many don't like to hear about it. I have coworkers and friends that have no idea about it.
15. The hardest thing to accept about my new reality has been: Alas, no more fried okra. In all seriousness, the pain in learning to accept help and getting over feeling like a burden to my husband. That first flare when being a newlywed was tough. I questioned everything from my womanhood to my future. He saw me through, and though we learned A LOT, we are stronger than ever for it.
16. Something I never thought I could do with my illness that I did was: backpack Europe solo for 3 months as a young college grad, taking on adventures from paragliding to hiking the Alps!
17. The commercials about my illness: drive my crazy. They are all pharmaceutical related and gloss over side effects!
18. Something I really miss doing since I was diagnosed is: running. I joke my arthritic knees are worse than an 80 year olds. I miss running as a child. I haven't been able to run since then. I did, one time. Trying to catch an international flight. Not a pretty picture!
19. It was really hard to have to give up: the ability to socialize as much as I'd like.
20. A new hobby I have taken up since my diagnosis is: yoga
21. If I could have one day of feeling normal again I would: run, dance, eat everything in sight like try to find a state fair somewhere and eat deep fried ice cream! ha!
22. My illness has taught me: never to judge, to live in the moment as much as possible, and to be very grateful for this beautiful life
23. Want to know a secret? One thing people say that gets under my skin is: "But you look good/fine" As if they are questioning how I really feel.
24. But I love it when people: don't comment on my not eating at events or make a fuss if I try to substitute something. Or don't assume that my requesting a substitution means I'm a picky eater.
25. My favorite motto, scripture, quote that gets me through tough times is: "Come to me, all you who are weary and burdened, and I will give you rest." Matthew 11:28
26. When someone is diagnosed I’d like to tell them: about supplements and alternative medicine, about the importance of having a good doctor that will allow you to be a partner in the journey together and about how you can live a fulfilled life, even though it may be different from your dreams
27. Something that has surprised me about living with an illness is: how much empathy I have for people across the globe. Until you know what true suffering is, it's hard to feel at one with others in pain or suffering.
28. The nicest thing someone did for me when I wasn’t feeling well was: be there. stop by even if I say I'm ok, bringing me a hug and their friendship, along with a listening ear and not judging how I looked or felt!
29. I’m involved with Invisible Illness Week because: I am loving the website and idea!
30. The fact that you read this list makes me feel: blessed