Tuesday, September 1, 2009

Because It's Better To Be Aware

September 14-20 is Invisible Illness Awareness Week. I'm a little early, but this really grabbed my attention, and I wanted to share my answers with y'all.

30 Things About My Invisible Illness You May Not Know

1. The illness I live with is: Postural Orthostatic Tachycardia Syndrome. Meaning that my autonomic nervous system is essentially broken. If you don't know what your autonomic nervous system does, think of all the things your body does without you having to tell it to do them. That's it. The malfunction means I often pass out.

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

3. But I had symptoms since: About when I started puberty.

4. The biggest adjustment I’ve had to make is: Not doing whatever I want to do. I have to ration my energy. If there are a handful of things I want to do in a given day/week, I can pick one, maybe two of them without making myself sick.

5. Most people assume: That if I look fine, I feel fine.

6. The hardest part about mornings is: Getting upright. My body does not like mornings.

7. My favorite medical TV show is: House, MD, because as unrealistic as it is, I wish a doctor had been that blunt with me and would have tried that hard to figure it all out.

8. A gadget I couldn’t live without is: My laptop. It's how I connect with people "like me."

9. The hardest part about nights are: Falling asleep, and knowing that when I wake up in the morning, I won't feel rested.

10. Each day I take __ pills & vitamins. (No comments, please) 18, I think.

11. Regarding alternative treatments I: See a chiropractor regularly, if that counts. I haven't tried much, but I'd be willing to try just about anything if my specialist recommended it.

12. If I had to choose between an invisible illness or visible I would choose: I have this one for a reason, even if God's not telling.

13. Regarding working and career: I'm a full time college student, but I've made myself pretty sick a few times trying to keep up with the pace. I would be in trouble without a disability plan, and I transferred recently to get away from people who just didn't get the invisible part.

14. People would be surprised to know: That I am always in pain. Always, as in, it doesn't go away. So when I say I'm in pain, it means, more pain than usual.

15. The hardest thing to accept about my new reality has been: that some people won't accept that I have a different reality. Some people will never understand, and some people will just walk out.

16. Something I never thought I could do with my illness that I did was: Graduate from high school and get this far through college.

17. The commercials about my illness: Don't exist. It was on Mystery Diagnosis once (kind of accurately)

18. Something I really miss doing since I was diagnosed is: colorguard. No holding the arms above the head. Makes passing out more likely.

19. It was really hard to have to give up: Friends.

20. A new hobby I have taken up since my diagnosis is: Scrapbooking.

21. If I could have one day of feeling normal again I would: Pick up a flag and dance. Go out with my Fiance. Be spontaneous.

22. My illness has taught me: that sometimes even family doesn't understand.

23. Want to know a secret? One thing people say that gets under my skin is: "You look fine to me." or "Just get up and do it."

24. But I love it when people: Sacrifice some of their own "normal" to sit with me when my only choice is to be in bed.

25. My favorite motto, scripture, quote that gets me through tough times is: "God grant me the serenity to accept the things I cannot change; courage to change the things I can; and wisdom to know the difference." -The Serenity Prayer, Reinhold Niebuhr

26. When someone is diagnosed I’d like to tell them: Until you find the right doctor, sometimes you have to do your own research. Remember you're not alone, even if you haven't found support yet. You will.

27. Something that has surprised me about living with an illness is: that while some people could not care less, some people care more than you'll ever know.

28. The nicest thing someone did for me when I wasn’t feeling well was: So many things...

29. I’m involved with Invisible Illness Week because: I want to do my part to make sure other people are not treated the way I have been treated.

30. The fact that you read this list makes me feel: happy that I informed someone, happy that someone cared enough to read this whole thing.

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


anna and the ring said...

Just found your blog. Love this idea.

Can't wait to hear more.

Also could not agree more - Want to know a secret? One thing people say that gets under my skin is: "You look fine to me." or "Just get up and do it."

De said...

I love you and I am so proud of you!

jennie.newland said...

Wow that was powerful! I'm so sorry that people in your life were not understanding. My sister has had diabetes since she was 7 and sometimes when her sugar was getting low and she needed to go get something to eat she has had teachers before that wouldn't let her out of class because they thought that it was an excuse to get out of class. I think that this post is a great way to minister to others, and let them know they are not alone. Dropping by from SITS, and planning on doing alot more often.

Young Momma said...

Amazing post. You're a brave woman.