This week is Invisible Illness Awareness Week, September 10-16, 2012. I have an invisible illness, as do millions of Americans. Rosebud would sometimes like to be more visible, I think (she occasionally gets naked when I run), but by and large, you can’t tell she’s there. It’s a struggle for many of us who need special accommodations and maybe just a little smile from day to day.
“Be Kind for Everyone You Meet is Fighting a Great Battle.”–Plato
1. The illness I live with is: Ulcerative Colitis/Ileostomy
2. I was diagnosed with it in the year: 2010
3. But I had symptoms since: 2001
4. The biggest adjustment I’ve had to make is: With UC, it was spending almost 5 hours in the bathroom every day, not being able to take the subway, not being able to run outside, not being able to eat foods I like or that are healthy. With my ileostomy, everything has gone back to normal…except for how food exits my body Oh, and I have to hydrate more and eat more salt (twist my arm).
5. Most people assume: That digestive diseases are the fault of the person and can be cured with some special diet. Digestive diseases are either hereditary or the result of a transcription error in your DNA reproduction (RNA). Simple as that.
6. The hardest part about mornings are: With UC, it was that I had no idea what my stomach would do that day. Was 1 hour in the bathroom enough? 2? How much blood would I lose? It was terrible. Now, sometimes Rosebud needs to be re-dressed and it’s 4:45am and I have a 5:15am client. Not a lot of time but it’s pretty rare when that happens! All in all, a complete 180.
7. My favorite medical TV show is: Do old Grey’s Anatomy re-runs count? I don’t watch any of the “doctor” shows unless Dr. G, Medical Examiner counts…and I no longer have cable so I don’t even watch that anymore.
8. A gadget I couldn’t live without is: My Hollihesives by Hollister. Holla! With UC it was my smartphone. The bathroom is a lonely place for 5 hours a day.
9. The hardest part about nights are: Blowouts from gas. Yeah, ostomies are so sexy With UC it was the unpredictability of the emergency bathroom visits. Oh, and all the times I didn’t make it.
10. Each day I take: Vitamin D & B12. There used to be 3-4 other incredibly hard drugs on this list, but Rosebud made those all go away. They didn’t work anyway.
11. Regarding alternative treatments I: Tried. Acupuncture, juice diets, meditation, yoga. They failed.
12. If I had to choose between an invisible illness or visible I would choose: Invisible. No one stares at me or asks me point-blank about Rosebud who doesn’t already know me and know my story.
13. Regarding working and career: I am lucky that I had another choice beyond the drugs. UC was affecting every aspect of my career, including my ability to attend class to get my degree. Without the surgery, I’m not sure I would have been able to do my job long-term.
14. People would be surprised to know: That I am the happiest I have been in a long time with my colostomy bag and I would choose it every single day of the week and twice on Sundays rather than going back to doing my business “normally” and still have UC. You can keep my colon, I’ll take my health.
15. The hardest thing to accept about my new reality has been: Adjusting my wardrobe for my bag. Not fun.
16. Something I never thought I could do with my illness that I did was: Run two marathons during massive flare-ups and I’m planning on my 1st colon-free marathon in 6 weeks (5 months post-op). The human body is amazing.
17. The commercials about my illness: Never seen one. No one likes to talk about poop.
18. Something I really miss doing since I was diagnosed is: When I had UC, it was running outside. Now, it’s wearing a bikini on the beach.
19. It was really hard to have to give up: UC: salads. Ostomy: bikinis.
20. A new hobby I have taken up since my diagnosis is: UC: surfing the Internet in the bathroom. Ostomy: life is back to normal, nothing new to report.
21. If I could have one day of feeling normal again I would: Get in a bikini and run on the beach without a shirt.
22. My illness has taught me: That I am strong and life goes on. That my husband loves all of me always. That my family and friends (the real ones, anyway) rock.
23. Want to know a secret? One thing people say that gets under my skin is: Right after my surgery, someone remarked that the post-op 20lb. weight loss “looks great on you”. Oh gee, thanks. Never tell someone who is sick and has lost a bunch of weight due to their illness that they look “so great”. They feel like sh*t.
24. But I love it when people: Ask about Rosebud. It means they care enough to want to know about my disease.
25. My favorite motto, scripture, quote that gets me through tough times is: If you just keep going, eventually you will get to the finish line.
26. When someone is diagnosed I’d like to tell them: You can do anything you want with this disease, you just have to get creative and be brave.
27. Something that has surprised me about living with an illness is: How my husband has responded. His unwavering love and support has pulled me back off of many a ledge and kept things in perspective. I didn’t realize how much I needed that from him. His strength is the reason I have been able to go through all of this with a smile.
28. The nicest thing someone did for me when I wasn’t feeling well was: Leave the hospital room/my apartment and let me sleep. No, really. And I received more flower arrangements in the hospital and at home than I ever thought I would in a million years. I was so moved by the outpouring of support.
29. I’m involved with Invisible Illness Week because: My disease isn’t sexy, but that doesn’t mean you should know about and talk about it. I want the IBD community to be strong and supportive of each other.
30. The fact that you read this list makes me feel: Humbled. And a little weird. You read about poop?
Now go out and run!