30 things about my invisible illness you may not know – 2011



1. The illness I live with is:  Systemic Lupus Erythematosis, Sjogren’s syndrome and autoimmune hypothyroidism
2. I was diagnosed with it in the year:  1992
3. But I had symptoms since:  I was 9 years old
4. The biggest adjustment I’ve had to make is:  avoiding UVA/UVB rays
5. Most people assume:  I’m NOT sick because I don’t often look ill
6. The hardest part about mornings are:   joint pain
7. My favorite medical TV show is:   Mystery Diagnosis!
8. A gadget I couldn’t live without is:   sunscreen lotion!
9. The hardest part about nights are:   joint pain.
10. Each day I take __ pills & vitamins. (No comments, please) 14
11. Regarding alternative treatments I:  wish I could afford acupuncture (because I haven’t tried it) and craniosacral therapy (because it really helps)
12. If I had to choose between an invisible illness or visible I would choose:  NEITHER!
13. Regarding working and career:   I used to work full time but am now on disability
14. People would be surprised to know:  how much sleep I require
15. The hardest thing to accept about my new reality has been:  realizing that I can’t work full time, even if I want to.
16. Something I never thought I could do with my illness that I did was:  travel.
17. The commercials about my illness:   really don’t tell the whole story.
18. Something I really miss doing since I was diagnosed is:   basking in the warm sun.
19. It was really hard to have to give up:   being outdoors on a regular basis.
20. A new hobby I have taken up since my diagnosis is:  designing and creating jewelry.
21. If I could have one day of feeling normal again I would:  spend the day outside at a park.
22. My illness has taught me:   patience.
23. Want to know a secret? One thing people say that gets under my skin is:  “Have you every tried …..?”
24. But I love it when people:   tell me they keep me in their prayers.  It really helps.
25. My favorite motto, scripture, quote that gets me through tough times is:   When God closes a door, he opens a window.
26. When someone is diagnosed I’d like to tell them:   you are not alone.
27. Something that has surprised me about living with an illness is:   the isolation of living with a disease none of my friends have.
28. The nicest thing someone did for me when I wasn’t feeling well was:   give me a hug.
29. I’m involved with Invisible Illness Week because:   I have lupus.
30. The fact that you read this list makes me feel:   I’m not alone.


8 responses »

  1. Sorry it took me a bit to get over here for this, but they’ve been keeping me busy. Since you were 9! That’s crazy. I always hate hearing about people going to the doctors over and over countless times before someone figures out their issue. How frustratingly heartbreaking. Had they been diagnosing you with other ailments up until then, or did they think you were a hypochondriac? Either would be my big fear, being misdiagnosed/then mistreated or being treated like you were crazy. 😦 You poor baby. I’m glad they finally figured it out and have you on a better path. Glad to see you posting again. 😉

  2. Stopping over from Invisible Illness to say hello and read your list…. I have lupus too and totally agree with your comments about the sun and sunscreen. I live in Los Angeles and am constantly slathering on sunscreen and wearing huge hats– neither of which I enjoy.

    As for the “have you ever tried….” line. I’m lucky I haven’t hauled off and slapped someone yet for saying that to me. I’ve been hearing it for 18 years. Oy.

    I’ll be looking around your blog some more and be back again soon.

  3. Hi.

    I have PH not lupus but I know what it’s like to live with an invisible illness. I’ll take it over the alternative but it doesn’t make it easy.

    I just wanted to let you know that from your writing I feel I have a kindred spirit in you. You once wrote of the isolation of having a disease that none of your friends do and I get that.

    I have just started a blog myself and have included LupusRanting on my blogroll. Please feel free to check it out if you are so inclined.


    All the very best for health and happiness.


  4. I loved this post! Not because I like knowing you suffer, of course, but because it is so insightful. I can’t imagine what it would be like to get sick just from sunshine–well, heat gets me fainty, but I know the sun does a whole lot worse to you than to me.

    And, 14 is not a large number. If you include suppliments, I had it beat by 2, before losing my good insurance.

    You are not alone!

  5. Well, 90% of your list applies to me as well! I have to say that I also feel isolated by my friends without this illness. They try to be understanding and kind but there is nothing I can say to help them understand things as simple as why I can’t go out for drinks after work even though I really want to go.

  6. Hello Sue
    My name is Chelsea Stark I was recently diagnosed with Lupus.
    I have been looking online for other people who are living with this invisible companion called Lupus. And found your wonderful post. It really spoke to me. So I decided to share your post. I will also write my own post about my experience with my invisible companion call Lupus.
    I’m also looking for other people as well. I’m thinking about starting a blog on WordPress and blogger called My Invisible Companion Call Lupus. If anybody wants to reach out to me here is the link to my blog and you can leave a comment. Looking forward to hear from anyone.

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