ii-week

30 things about my invisible illness

Last year for National Invisible Illness week I wrote 30 things about my invisible illness. The answers have changed a bit, so I figured I’d update them for this years Invisible Illness Week. And yes, I know I’m doing this early, I’m just awesome like that.

1. The illness I live with is: Fibromyalgia and Lyme Disease

2. I was diagnosed with it in the year: November 2011


3. But I had symptoms since: April 2010


4. The biggest adjustment I’ve had to make is: Letting go of all the things I used to do and accepting that I will not have any more children or a great career

5. Most people assume: That I am just fine and that I should function like everyone else

6. The hardest part about mornings are: Getting my exhausted body out of bed. Mornings are when the pain is at it’s worst.

7. My favorite medical TV show is: Scrubs, though I wouldn’t consider it much of a medical show, it’s more comedy than anything

8. A gadget I couldn’t live without is: My Kindle, it keeps my kids entertained when I am feeling my worst. Though I could  probably live without it if I needed to since I just got it. 

9. The hardest part about nights are: Getting to sleep, it usually takes me an hour or so and that’s with heavy sleeping pills. If I didn’t take sleeping pills I’d never sleep.

10. Each day I take __ pills & vitamins:  I’ve pared it down lately, I think it’s only 5.

11. Regarding alternative treatments I:I’m open, but very skeptical. I’ve been trying to manage my health more through diet and vitamins lately, we’ll see how it goes.

12. If I had to choose between an invisible illness or visible I would choose: Invisible. Sometimes it’s nice to be able to pretend to be normal. Nobody stares at me when I go out because they have no idea I have an illness. Sometimes I think it would be nice if it was visible so people would understand me better, but overall I’m glad it’s not. 

13. Regarding working and career: It’s a pipe dream for me. I hope to work part time by next year, but I don’t think I’ll ever be able to work full time again, and I’ll definitely never have a career. 

14. People would be surprised to know:  I get really jealous of people who can have a career, it’s not fair (of course, as my father used to say, fair’s where you go to see the pigs). 

15. The hardest thing to accept about my new reality has been: Giving up my dreams and finding new ones. 

16. Something I never thought I could do with my illness that I did was: Be happy, I figured if I was in pain all the time I would have to be miserable. 

17. The commercials about my illness: Haha, they’re such a joke! Take a pill for fibromyalgia and you’ll be cured and be able to do everything you want! Yea right!

18. Something I really miss doing since I was diagnosed is: Rock climbing 

19. It was really hard to have to give up: Socializing. I haven’t given it up, but I’m not the life of the party anymore. I have to limit how often I have people over since it takes most of my energy. 

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: Take my kids rock climbing

22. My illness has taught me: To be patient and sympathetic  with others (at least, more than I used to)

23. Want to know a secret? One thing people say that gets under my skin is: “But I get tired too, and I don’t get to sit around like you do.”

24. But I love it when people: Let me know they care

25. My favorite motto, scripture, quote that gets me through tough times is: “The only way to get through life is to laugh your way through it. You either have to laugh or cry. I prefer to laugh, crying gives me a headache.” Marjory Hinckley

26. When someone is diagnosed I’d like to tell them: This will be one of the hardest things you will have to deal with, but you can still live a happy life. 

27. Something that has surprised me about living with an illness is: Life goes on.

28. The nicest thing someone did for me when I wasn’t feeling well was: Several people have had my kids over at different times to give me a break. 

29. I’m involved with Invisible Illness Week because: I want to spread awareness about invisible illness. 

30. The fact that you read this list makes me feel:  Surprised, it’s a long list! I feel like I should offer a prize or something. 

Facebook Comments

10 thoughts on “30 things about my invisible illness

  1. Thanks for sharing your list! My husband has chronic Lyme disease & I can relate to so much of what you wrote here. (Saw your link on the National Invisible Illness Week site & had to come read!) I just posted one–we choose not to lose heart! http://www.hopeismyanchor.com/2013/08/we-choosenot-to-lose-heart.html Hang in there. I know it's a long hard road. My husband was diagnosed in 2000, but he had gone undiagnosed for at least 15 years. God bless you.

    1. Thanks for stopping by Merry. I loved your post about making the choice to not lose heart. I feel like I have chosen that also, even though like everyone else, there are good days and bad days.

  2. Thanx for sharing. It's always inspiring to me to hear someone else with daily invisible pain learn to appreciate more thingsIn life that other people take for granted. & I love hearing others talk about finding a way to still be happy….. esp because the world doesn't stop for us…. It goes on with or without us & it's our choice if we want to just exist or REALLy live!

  3. Thanx for sharing. It's always inspiring to me to hear someone else with daily invisible pain learn to appreciate more thingsIn life that other people take for granted. & I love hearing others talk about finding a way to still be happy….. esp because the world doesn't stop for us…. It goes on with or without us & it's our choice if we want to just exist or REALLy live!

Leave a Reply

Your email address will not be published. Required fields are marked *