30 Things About My Invisible Illness You May Not Know

Apparently, Invisible Illness Awareness Week was September 11th-18th. During this week, “prominent” bloggers were asked to post their responses to the following questions. Though I am nowhere near prominent when it comes to blogging, I wanted to do my part to raise awareness of these issues.

30 Things About My Invisible Illness You May Not Know

1. The illness I live with is: Crohn’s+ (Crohn’s is known to come with “extraintestinal” complications such as inflammatory arthritis, which I also have).

2. I was diagnosed with it in the year: 1993.

3. But I had symptoms since: around 1980ish.

4. The biggest adjustment I’ve had to make is: Learning how to mentally disconnect/give up all dignity when I’m going through Crohn’s-related tests, medical visits, etc.

5. Most people assume: If I just change my diet or lessen my stress levels, I’ll be okay (it’s not true).

6. The hardest part about mornings are: Waking up feeling like I didn’t get any sleep. Or waking up in excruciating abdominal pain . . . or joint pain.

7. My favorite medical TV show is: Gotta go with ER, but I was pretty excited when House mentioned Crohn’s.

8. A gadget I couldn’t live without is: My cell phone keeps me connected via email, texts, social media, etc. It’s small and much more portable than a big laptop, so it comes in handy when I’m stuck in the hospital.

9. The hardest part about nights are: I’m mentally a night owl, so this is when my brain perks up with ideas. However, Crohn’s saps my energy, so I find myself trying to stick to a bedtime regimen – in hopes that I’ll actually feel rested the next morning. That means not always completing tasks that I wanted/needed to complete. (I’m currently a full-time grad student in a dual degree program, so that’s stressful.)

10. Each day I take: At least 13 pills.

11. Regarding alternative treatments I: Wish that people who’ve never experienced Crohn’s didn’t push them in my face. Some may work for me, but others may not. That’s that.

12. If I had to choose between an invisible illness or visible I would choose: Everyone has their own cross to bear. I have learned to live with Crohn’s and have used my diagnosis to help others, so I’ll stick with what I know…

13. Regarding working and career: It’s difficult. My dream job is to be self-employed, so I can have the flexibility I need to accommodate my physical needs.

14. People would be surprised to know: My high pain threshold. I was rushed into emergency surgery, and the medical team discovered that I’d had a walnut-sized hole in my small intestine. I’d been laughing and joking on my way into the operating room. The medical team was amazed.

15. The hardest thing to accept about my new reality has been: There’s no cure, and it’s gotten progressively worse with age. I also hate that, at some point, I have to have this very personal and revealing conversation with professors, employers, etc. I hope to get married someday, and I often wonder/worry about how I even begin to have that conversation . . .

16. Something I never thought I could do with my illness that I did was: Travel to Africa! It required a lot of pre-planning and nutritional vigilance on my part, but it happened. And I was one of the only people in my group who didn’t get diarrhea!

17. The commercials about my illness: Are popping up more often and are fairly accurate.

18. Something I really miss doing since I was diagnosed is: I’ve suffered with this for just about all of my life, so that reality hasn’t really changed. The diagnosis just gave it a name. I wish I could enjoy a day out without having to worry about what I ate or the location of the nearest bathroom.

19. It was really hard to have to give up: Eating fruits and veggies on a regular basis.

20. A new hobby I have taken up since my diagnosis is: I have plenty of hobbies, but none that I took up since/because of the diagnosis.

21. If I could have one day of feeling normal again I would: Go out all day and be social – to the movies and to eat and to forest preserves and places that didn’t have lots of bathrooms! And lots of walking – because I wouldn’t have to worry about sore joints.

22. My illness has taught me: To be very intentional about self-care – which means being comfortable with saying no and being protective of my time.

23. Want to know a secret? One thing people say that gets under my skin is: “I have a (friend, cousin, aunt, coworker’s sister, etc.) who had Crohn’s, and they tried (some remedy, procedure, etc.) and don’t have any problems anymore.” I also don’t take very kindly to toilet humor (i.e., stuff like the scene from “Bridesmaids”).

24. But I love it when people: Share real stories of loved ones who are also living with Crohn’s – or when people simply affirm and encourage me.

25. My favorite motto, scripture, quote that gets me through tough times is: Just one?? Philippians 4:13 – “I can do all things through Christ which strengtheneth me.”

26. When someone is diagnosed I’d like to tell them: To have a support system and a sense of humor.

27. Something that has surprised me about living with an illness is: Again, it’s been a reality for so long that I guess I don’t see any surprises…

28. The nicest thing someone did for me when I wasn’t feeling well was: I had a hospital stay go longer than I’d expected, so I had to ask a friend to bring me my laptop . . . and more undies. And she did; now that’s a true friend!

29. I’m involved with Invisible Illness Week because: I want to get the word out – even though I’m a Jane-Come-Lately on this. I want people to know about invisible illnesses and consider the people who are affected by them – people that may work with them, go to school with them, etc. I especially want to raise awareness of Crohn’s because it’s not the most “glamorous” disease; so many people who live with it suffer in silence. I hope that my efforts can contribute to erasing the stigma.

30. The fact that you read this list makes me feel: Hopeful that it gives you more insight into Crohn’s and me.

I discovered this post on Christine Miserandino’s website: But You Don’t Look Sick. Christine lives with Lupus and is the creator of the Spoon Theory. Please take a moment to check out her site and follow her on Twitter at @bydls. For more info on Crohn’s Disease, check out the Crohn’s and Colitis Foundation of America’s website: ccfa.org.