30 Questions About Living With An Invisible Chronic Illness

I came across this post recently called 30 Things About My Invisible Illness You May Not Know from the blog Visibly Me. As you will see from question 29, these questions were part of something I learned about called Invisible Illness Week. I thought it was a great way to share some of the commonly asked questions so, here’s my answers.

1. The illness I live with is: Something wrong with my ears but ENT doctor couldn’t give me a specific diagnosis.

2. I was diagnosed with it in the year: 2005.

3. But I had symptoms since: 2000.

4. The biggest adjustment I’ve had to make is: Losing my independence.

5. Most people assume: That either I have nothing wrong with me or I can do more than I say I can. No one sees how much time I spend sitting still or lying down throughout the day so that I don’t move my head too much and cause disequilibrium problems.

6. The hardest part about mornings are: When the weather changes, I start my day already feeling woozy and off-balance.

7. My favorite medical TV show is: I stopped watching medical shows about six months after I got sick. They weren’t helping and only made me anxious because the doctors couldn’t figure out what was wrong with me.

8. A gadget I couldn’t live without is: My cellphone that I take with me so that I can call a cab in case I start feeling sick and don’t think I can make it home.

9. The hardest part about nights are: I usually sleep OK and usually go back to sleep if I wake up in the middle of the night. Some nights, though, I’m wide awake for a two or three hours.

10. Each day I take up to 10 pills & vitamins.

11. Regarding alternative treatments I: I tried acupuncture and saw a chiropractor. Didn’t notice any difference.

12. If I had to choose between an invisible illness or visible I would choose: I wouldn’t wish a chronic illness on anyone or ask them to choose. I would choose being healthy.

13. Regarding working and career: I wish I could work.

14. People would be surprised to know: How scared I really am sometimes, especially of the future. I try to be positive and as stress-free as possible but life has different plans sometimes.

15. The hardest thing to accept about my new reality has been: This is probably the best I will ever be, health-wise.

16. Something I never thought I could do with my illness that I did was: Live with a bunch of people and enjoy it.

17. The commercials about my illness: What commercials!?!?!? Dizziness is always the side effect.

18. Something I really miss doing since I was diagnosed is: Everything!

19. It was really hard to have to give up: Moving my head whenever I want. I love looking at things when I walk or ride in a car or bus. But, ear and balance problems rarely allow for that anymore. It’s even been years since I’ve been on a bus because I start to feel sick and woozy.

20. A new hobby I have taken up since my diagnosis is: The internet. LOL!

21. If I could have one day of feeling normal again I would: Go where ever I want and look at what ever I want, moving my head and not worrying about falling over.

22. My illness has taught me: To adapt and accept that some things take a long time to get accomplished.

23. Want to know a secret? One thing people say that gets under my skin is: “Just walk slower”.  The speed I walk is not, and never has been, the problem. Although, I know they mean well.

24. But I love it when people: Want to just hang out or offer to drive me somewhere.

25. My favorite motto, scripture, quote that gets me through tough times is: “#@$%! I hate my life!” Venting helps me from keeping things pent-up.

26. When someone is diagnosed I’d like to tell them: “educate yourself because doctors don’t tell you everything you need to know.”

***I didn’t change this answer but would add: remember that they also don’t know everything and some don’t believe the extent our illness can be disabling. Or such illnesses as CFS, ME or fibromyalgia. Also, read blogs from people who are dealing with the same issues as you are, though not necessarily the same illness.

27. Something that has surprised me about living with an illness is: How many people are dealing with chronic illness. There is so many of us and the internet has a great community of people who are dealing with so many of the same things I am.

28. The nicest thing someone did for me when I wasn’t feeling well was: Stay with me when I almost passed out until I felt better.

29.  I’m involved with Invisible Illness Week because:  I never knew this existed. Also, reread the answer to number 26 about blogs.

30. The fact that you read this list makes me feel: That I’m not alone in dealing with an invisible chronic illness.



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