30 Things About My Invisible Illness You May Not Know – Invisible Illness Awareness Week

1. The illness I live with is: Inflammatory Bowel Disease. My doctors aren’t sure if I have Ulcerative Colitis or Crohn’s Disease.
2. I was diagnosed with it in the year: 2013
3. But I had symptoms since: 2007
4. The biggest adjustment I’ve had to make is: Realizing that there will be days I shit myself.
5. Most people assume: IBD makes you poop your pants. And that because I look healthy, I am healthy. When that isn’t the case at all.
6. The hardest part about mornings are: Having the energy to get out of bed and sometimes making it to the bathroom.
7. My favorite medical TV show is: Grey’s Anatomy
8. A gadget I couldn’t live without is: Computer
9. The hardest part about nights are: Staying asleep
10. Each day I take 10 pills & vitamins. I also have an injection every two weeks.
11. Regarding alternative treatments I: have not tried any yet. I’m thinking about trying acupuncture.
12. If I had to choose between an invisible illness or visible I would choose: I’m not sure. Being ill either way isn’t fun. I hate that people can’t always tell that I’m sick but what disease do you pick if you want people to know that you are?
13. Regarding working and career: It can be hard sometimes to function at work when I’m in a flare and struggling.
14. People would be surprised to know: There are days it’s all I can do to get through work because I’m so tired. After I get home I don’t have the energy to clean or go buy groceries. That there’s times I’m going to the bathroom 10 times a day. There’s days I’m extremely depressed and I just want to sit and cry all day. There’s times I’m in so much pain I just want to scream at the top of my lungs.
15. The hardest thing to accept about my new reality has been: I might have to have surgery. I might have to have an ostomy bag someday. And it scares the hell out of me.
16. Something I never thought I could do with my illness that I did was: I haven’t really had that yet.
17. The commercials about my illness: Make it look like IBD is only about going to the bathroom when it is really so much more than that.
18. Something I really miss doing since I was diagnosed is: Having the energy to do whatever I want. Not having to worry about medical bills.
19. It was really hard to have to give up: I have a fructose malabsorption along with IBD and it’s been hard to give up a lot of veggies, fruits and juices.
20. A new hobby I have taken up since my diagnosis is: I haven’t started one but I want to learn how to sow and knit.
21. If I could have one day of feeling normal again I would: Live life to the fullest. Probably go skiing all day or ride my motorcycle.
22. My illness has taught me: Life isn’t fair and will never be fair. Doctors won’t always have the answers you want. People aren’t always nice.
23. Want to know a secret? One thing people say that gets under my skin is: telling me that I look healthy when my immune system is attacking me. Telling me to take better care of myself.
24. But I love it when people: Ask me how my illness is going and tell me that they’re praying for me. It lets me know that they care.
25. My favorite motto, scripture, quote that gets me through tough times is: Be brave
26. When someone is diagnosed I’d like to tell them: Fight like hell and educate yourself.
27. Something that has surprised me about living with an illness is: The ignorance of people
28. The nicest thing someone did for me when I wasn’t feeling well was: Just be there for me. I tend to just live in my living room and bathroom when I’m not feeling well. And a lot of people don’t always know when things are getting really bad.
29. I’m involved with Invisible Illness Week because: awareness needs to be raised for these.
30. The fact that you read this list makes me feel: like you care.

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