30 Things About My Invisible Illness You May Not Know

Invisible Illness Week is coming up soon, and as part of that I’ve decided to participate in the 30 Things About My Invisible Illness You May Not Know. Before I looked at the list I figured this would be good for new readers, but as I read through the insightful items, I realize long-time readers might learn something new, too. So here we go….


1. The illness I live with is: Undifferentiated Connective Tissue Disease, Hashimoto’s Disease, Hypothyroid, Mild Adrenal Fatigue, PCOS, IBS, Raynaud’s
2. I was diagnosed with it in the year: In the order I listed them, 2003, 2010, 2004, 2012, 2005, 2001, 2004
3. But I had symptoms since: 1993, 2000, 2000, 2011, 1995, 1994, 1994
4. The biggest adjustment I’ve had to make is: Missing out on life – missing social events, spending less time with friends, less dating, having to leave my job
5. Most people assume: I’m a typical, healthy 30-something
6. The hardest part about mornings are: Becoming awake. Sometimes my body wants to stay asleep.
7. My favorite medical TV show is: None at the moment.
8. A gadget I couldn’t live without is: My laptop. It is my connection to family and friends when I can’t leave the house, not to mention a great source of medical information.
9. The hardest part about nights are: The lonliness
10. Each day I take __ pills & vitamins. (No comments, please) 47
11. Regarding alternative treatments I: I do what works and avoid what doesn’t work.
12. If I had to choose between an invisible illness or visible I would choose: I’ve never had a visible illness, so I can’t fairly answer that.
13. Regarding working and career: I wish I had the option of working right now.
14. People would be surprised to know: I’m in pain every single day.
15. The hardest thing to accept about my new reality has been: I don’t know how I’ll feel 1 year, 3 years, 20 years from now. I could be better, could be worse, but I can’t know.
16. Something I never thought I could do with my illness that I did was: Go on a picnic without fear about the lack of bathrooms.
17. The commercials about my illness: Don’t exist.
18. Something I really miss doing since I was diagnosed is: Riding a bicycle.
19. It was really hard to have to give up: Dreams of having children.
20. A new hobby I have taken up since my diagnosis is: Knitting. The movement keeps my finger joints looser.
21. If I could have one day of feeling normal again I would: Have a huge party with everyone I love, and be with them the entire day without having to stop and rest.
22. My illness has taught me: To appreciate the things that I do have.
23. Want to know a secret? One thing people say that gets under my skin is: “I could never give up gluten/dairy/other food.”
24. But I love it when people: Offer to make plans accessible for me, without making a huge deal about it.
25. My favorite motto, scripture, quote that gets me through tough times is: “I may not be there yet, but I’m closer than I was yesterday.”
26. When someone is diagnosed I’d like to tell them: “Don’t rush to accept this. You’ll accept it in your own time. It might take a while, but you’ll get there. Just take it one day at a time.”
27. Something that has surprised me about living with an illness is: My new “normal” feels so natural sometimes, until I realize how far off I am from where I should be.
28. The nicest thing someone did for me when I wasn’t feeling well was: Spend time with me but without discussing how lousy I felt; we just talked and it was a great distraction.
29. I’m involved with Invisible Illness Week because: I think it’s incredibly important to educate people about what we live with.
30. The fact that you read this list makes me feel: Cared about.

5 Responses to 30 Things About My Invisible Illness You May Not Know

  1. Jess says:

    Hugs hun!

    I was going to participate in this too, but I’m not sure where I stand…I don’t really think my disability is invisible. I have the extra bones and misshaped limbs etc that make it apparent, but my pain is invisible because people think “it’s just bones. Bones don’t hurt”.

    Great tip on being diagnosed! Solid advice for anyone really.

    • chronicrants says:

      Jess, it’s completely personal. If you feel you have aspects of your illness that are invisible, then write about that. It’s no one else’s place to judge your illness!

  2. […] 30 Things About My Invisible Illness You May Not Know (chronicrants.com) […]

  3. […] was thanks to reading ‘Chronic Rants’ post on Invisible Illness Week that I first knew about it. I read her excellent post on 30 things to know […]

  4. chronicrants says:

    I sort of want to change my answer to #23. The “I could never…” thing was fresh on my mind, but two comments bother me more:
    1) Everything will be ok. (Oh really? You think so? You’re a doctor now?)
    2) Isn’t there a pill that can fix it? (Oh sure, of course there’s a pill, I’ve just chosen not to take it for the hell of it!)

    Hmm, there may be some blog posts in there…..

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