30 Things About My Invisible Illness You May Not Know

30 Things About My Invisible Illness You May Not Know

1. The illness I live with is: Fibromyalgia, Chronic Fatigue Syndrome/Chronic Enteroviral Infection, Dysautonomia, and Endometriosis.

2. I was diagnosed with it in the year: First two in 2002

3. But I had symptoms since: Major since 2001, less severe since pre-teens.

4. The biggest adjustment I’ve had to make is: Trying to accept that I am not the person I used to be, not being able to work a regular job, and dealing with guilt.

5. Most people assume: That just because I can wear makeup, dress nice, and take a pain pill right before any social events, I must be fine the rest of the time.

6. The hardest part about mornings are: Dealing with temperature extremes and morning stiffness, needing time to let my body/blood pressure adjust to being upright.

7. My favorite medical TV show is: Grey's Anatomy, lol.

8. A gadget I couldn’t live without is: Computer. Keeps me connected when I can't get out.

9. The hardest part about nights are: Feeling better and then having to go to sleep.
10. Each day I take 10-15 pills & vitamins/supplements. (No comments, please)

11. Regarding alternative treatments I: Wish I could afford them because they really help!

12. If I had to choose between an invisible illness or visible I would choose: Visible. It's so hard to ask for help or get it when you look fine.

13. Regarding working and career: I still hope to be able to support myself one day.

14. People would be surprised to know: How much I struggle every day, and that my mind is always running even when my body's exhausted, so I have a hard time doing nothing...

15. The hardest thing to accept about my new reality has been: Not knowing how I'm going to feel, what's going to be acting up from day to day, and not being able to work. It's driven me half insane!

16. Something I never thought I could do with my illness that I did was: Build physical strength. Hopefully I can figure out how to keep it.

17. The commercials about my illness:Get on my NERVES really bad! The way they say Fibe-roe-my-AL-gee-a makes it obvious they don't have it...the CFS ones are good tho.

18. Something I really miss doing since I was diagnosed is: Being able to do anything I set my mind to. Again, WORKING. Going to concerts, too. In general, independence and self-sufficiency.

19. It was really hard to have to give up: My jobs. My apartment. Life as I knew it.

20. A new hobby I have taken up since my diagnosis is: Blogging.

21. If I could have one day of feeling normal again I would: Do something really physically demanding. Of course, then I'd have to have a couple more days cuz the next days I would barely be able to move...

22. My illness has taught me: That life isn't fair. The need for patience (which I'm still not good at.) That I must've really screwed up in my last life! lol, j/k.

23. Want to know a secret? One thing people say that gets under my skin is: "But you look so good!" I don't mind hearing I look great, it's just the BUT part.

24. But I love it when people: Are understanding, come visit me, especially when I'm stuck at home.

25. My favorite motto, scripture, quote that gets me through tough times is: That a flare won't last forever.

26. When someone is diagnosed I’d like to tell them: It's going to be hard work getting better, and staying that way, but never give up.

27. Something that has surprised me about living with an illness is: How unkind, self-involved, and judgmental people you expected better from can be. But also how amazingly kind strangers and people you didn't expect can be.

28. The nicest thing someone did for me when I wasn’t feeling well was: Help me clean my apartment, secretly pay a doctor's bill so I could refill my medication which is was miserable without.

29. I’m involved with Invisible Illness Week because: I don't look sick, but I am, and I feel like I get judged unfairly a lot.

30. The fact that you read this list makes me feel: Grateful, while at the same time, fearing rejection, lol. I feel like I'm expected to somehow be graceful and inspiring about all this, but I'm not a Lifetime Movie actress!