Monday, September 8, 2014

30 Things About My Invisible Illness You May Not Know

Today marks the start of Invisible Illness Awareness Week. I'm starting the week off with the 30 Things Meme.

30 Things About My Invisible Illness You May Not Know

1. The illness I live with is:
      Ehlers Danlos Syndrome, Dysautonomia, and, perhaps, Mitochondrial disease. Because, like Lay's potato chips, "betcha can't have just one" chronic illness. 
2. I was diagnosed with it in the year:
3. But I had symptoms since:
4. The biggest adjustment I’ve had to make is:
      Learning to pace myself.

5. Most people assume:
      I'm not really affected much by my illnesses

6. The hardest part about mornings are:
      Trying to eat a healthy breakfast; it's too tempting to grab a cereal bar.

7. My favorite medical TV show is:
      New York Med

8. A gadget I couldn’t live without is:
       My IPad. I could live without it, but I wouldn't want to. It is quickly replacing my laptop. Besides surfing the net, I use it for reading books, watching TV and doing genealogical research

9. The hardest part about nights are:
      Not always being able to sleep.

10. Each day I take __ pills & vitamins. (No comments, please)
      Eight (more if I need to take pain medication.)

11. Regarding alternative treatments:
        I Think it can be useful, but it's probably not for me.
12. If I had to choose between an invisible illness or visible I would choose:

13. Regarding working and career:
        I had to give up my job, but I'm finding other ways to replace its role in my life.

14. People would be surprised to know:
         How sick I really am. And, that I'm becoming more and more concerned about what the future holds.

15. The hardest thing to accept about my new reality has been:
         Not being able to keep up with friends the way that I'd like to. Also, I've lost friends and have found it hard to make new friends.

16. Something I never thought I could do with my illness that I did was:
       Successfully navigate the health care system, which is always a work in progress.

17. The commercials about my illness:
       What commercials?

18. Something I really miss doing since I was diagnosed is:
       Taking long walks.

19. It was really hard to have to give up:
      Having control over my life.

20. A new hobby I have taken up since my diagnosis is:
       No really new hobbies, but I've rediscovered an old hobby. I love genealogy.

21. If I could have one day of feeling normal again I would:
      Go for a long walk with my husband, then have a picnic lunch, followed by dancing.

22. My illness has taught me:
          We only have so much control over our lives. However, the control we do have (what we eat, how we treat our bodies, etc) we often give up.

23. Want to know a secret? One thing people say that gets under my skin is:
         "I have a cousin who has xyz and they climbed Mt Everest." We are individuals and
our illnesses affect us differently. Some of us CANNOT climb Mt Everest no matter how hard we try. We shouldn't be shamed because we can't do something or because we listen to what our body is telling us.

24. But I love it when people:
        Call to see how I am doing. Or, send a card.

25. My favorite motto, scripture, quote that gets me through tough times is:
       Philippians 4:13. Look it up.

26. When someone is diagnosed I’d like to tell them:
       You will survive. Take time to learn about your illness and to create a network of supportive friends, family and medical professionals.

27. Something that has surprised me about living with an illness is:
       How uncomfortable people are regarding illness. So uncomfortable that they often ignore that it exists.

28. The nicest thing someone did for me when I wasn’t feeling well was:
       Clean the kitchen without being asked. Thanks family!

29. I’m involved with Invisible Illness Week because:
       I want to spread awareness of chronic illness. I want to help others understand a bit more. Hopefully, all of us participating can create a movement dedicated to understanding and supporting those with chronic illness.

30. The fact that you read this list makes me feel:
      Thankful. And, that  maybe you have a bit more insight about invisible illness. Maybe now you can educate others about  invisible, chronic illness.

Thanks for reading. I apologize for the formatting problems. This is my first time blogging from my IPad. It will definitely take some getting use to.


  1. I've been reading a lot of the blogs in this meme. The answer to 23 is the same for a lot of people! There is a saying, "If you've met one person with <>, you've met ONE person with <>" People really have to realize that just because one person has X and can or can't do certain things, that doesn't mean another person will have the same experience!

    1. Angel, You are so right. Everyone experiences their illness in their own way. Sometimes, I think our society needs to have heroes. But, being a hero doesn't have to mean we ignore our body. Thanks for your comment!

  2. My doctors believe I have EDS-III. As part of Invisible Illness Awareness Week last year, I took part in the "30 Things You May Not Know About My Invisible Illness" meme, too. I have a chronic pain blog, and it's posted there. Thanks for sharing yours. Here's mine:

    1. Shannon, I'm sorry you may have EDS, too. Thanks for sharing the link to your blog. I'll check it out.