Monday, September 7, 2009

30 Things About My Invisible Illness You May Not Know: Ehlers-Danlos Syndrome

National Invisible Chronic Illness Awareness Week is held annually in September and is a worldwide effort to bring together people who live with invisible chronic illness and those who love them.

30 Things About My Invisible Illness You May Not Know:

1. The illness I live with is: Ehlers-Danlos Syndrome, Hypermobility Type

2. I was diagnosed with it in the year: 2006

3. But I had symptoms since: birth, though the pain aspect didn't start until my teens.

4. The biggest adjustment I’ve had to make is: to my expectations of myself and what I can do with my husband, around the house, with my friends, for a career... 

5. Most people assume: I'm "normal" (read: not in pain, exhausted, etc)

6. The hardest parts about mornings are: waking up unrefreshed. Putting my painful feet on the ground. Wondering if any of my joints are going to act up.

7. My favorite medical TV show is: House, MD for the humor (the medical stuff is not always accurate though)

8. A gadget I couldn’t live without is: how do I choose? I think it would have to be my car. 

9. The hardest part about nights is: knowing I am not going to get enough refreshing sleep.

10. Each day I take ~15 pills & vitamins. 

11. Regarding alternative treatments I: have had various results. I believe they should be complementary to traditional medical treatment.

12. If I had to choose between an invisible illness or visible I would choose: Invisible, but my snarky answer is to say neither!

13. Regarding working and career: On a good day, I hope to go back to school for a Master's in teaching or acupuncture but I know there will be limitations on what I can do after graduation - like I can't handle a large class of students and would probably have to do special ed or tutor. I can never be self-employed and I don't think I can work full time. 

On a bad day, I don't think anything is possible and just want to hide under the covers. 

14. People would be surprised to know: I used to love middle eastern dance.

15. The hardest thing to accept about my new reality has been: the effect it has had on my marriage. I was diagnosed 6 weeks after our wedding and I've since had more pain and joint problems than ever before. I feel like I've let my husband down, though I know that is not true. 

16. Something I never thought I could do with my illness that I did was: create realistic expectations for my work performance with my boss with no repercussions. Help others with the disorder.

17. The commercials about my illness: what commercials?!

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

19. It was really hard to have to give up: dancing. Cute shoes (just kidding!).

20. A new hobby I have taken up since my diagnosis is: blogging and being proactive with the EDNF.

21. If I could have one day of feeling normal again I would: spend the day in bed with my hubby.

22. My illness has taught me: to listen to my body. Also, to know who my true friends are.

23. Want to know a secret? One thing people say that gets under my skin is: "You are too sensitive."

24. But I love it when people: let me help out with projects that utilize my strengths without taxing me - I can be useful, creative, and maintain my boundaries. (I also have to say that I love it when people accept that I need to go home and sleep all day)

25. My favorite motto, scripture, quote that gets me through tough times is: "I love you."

26. When someone is diagnosed I’d like to tell them: it's not all in your head. AND That there is no such thing as an EDS specialist MD, you are the specialist who needs to educate your health care professionals (educational material and support are at

27. Something that has surprised me about living with an illness is: that I finally have a name that explains why I've had the problems I've had forever, and that I am relieved to have this diagnosis. 

28. The nicest thing someone did for me when I wasn’t feeling well was: make dinner and do the dishes! On a medical level, was to believe that I was in pain and work with me to find a pain med that helped take the edge off.

29. I’m involved with Invisible Illness Week because: it's a chance to get the word out about EDS, which affects 1:5000 people and is more common than people think. 

30. The fact that you read this list makes me feel: like one more person has learned that Ehlers-Danlos Syndrome exists.

Do you want to write your own "30 things..."? 

Get the scoop at!

Find out more about National Invisible Chronic Illness Awareness Week and the 5-day free virtual conference with 20 speakers Sept 14-18, 2009 at


  1. Hello!! Im a fellow EDS'er..I just loved this post and hoped you didnt mind if I used the same thing on my blog. I also noticed in another blog that you and I follow (bubble girl) that you mentioned a move to my neck of the woods...if you end uo making it out to Washington let me know there are some wonderful docs out here amoung other things....I only know one other person out here with EDS and we have tried to meet a few times but it never worked out, we have also discussed creating a local group through EDNF but its just never got off the ground, maybe with one other person in the area we might be able to make it happen. =) Take care!!


  2. Hi Nicole,

    Of course - I posted a link to get the '30 things...' at above.

    I've emailed with Dr. Niki recently because I know she is up in that area. I think she mentioned you. I am definitely down for meeting with others who deal with EDS. The EDNF has no problem with people getting together to support each other, but we'd have to get chartered with them to use the logo/name, etc. If we can collect more people (maybe through Melanie Pepin/Peter Byers), we'd have enough to make the hassle of creating an official group worth it. In the meantime, let's plan to get together when I move out in January. (wish I could move sooner though!!!!!)

    Thanks for writing. You have a beautiful little guy and he looks just like you!

    Take care,