Invisible Illness Awareness Week: the struggle you don’t see

September 28 through October 4 is Invisible Illness Awareness Week, an event which seeks to educate the general public about the reality of living with a chronic illness. It was founded in 2002 by Lisa Copen, the founder of The “Our 30 Things” meme, shortened to 20 for this article, is a way for people suffering from invisible illnesses to share their story with the public.

20 Things About My Invisible Illness You May Not Know.

1. The illness I live with is: Complex Regional Pain Syndrome type 1, also known as Reflex Sympathetic Dystrophy.

2. I was diagnosed with it in the year 2009 – the year I entered high school.

3. The biggest adjustment I’ve had to make is: not being as active. It’s normal for me now, but I was a really active kid, and being sedentary was strange. 4

. Most people assume that I’m not really sick because I push myself to function at the level of an abled person of my age. I feel a lot of pressure to do things that are very physically strenuous for me in order to not appear lazy.

5. The hardest part about mornings is getting moving. Actually forcing myself to get up, get dressed, walk the dog… after that, it’s a little easier to stay moving.

6. My favorite medical TV show is: eh, probably Scrubs? I like humor. Also, Dr. House is a jerk.

7. A gadget I couldn’t live without is: my phone. Sometimes I’m stuck in situations where I need help or medical information or medication from someone and my phone is a lifesaver.

8. The hardest part about nights is: getting past the fact that I can’t be comfortable in bed and just letting the sleep meds kick in.

9. Each day I take pills & vitamins.

10. If I had to choose between an invisible illness or visible I would choose: not being sick? Is that an option? But seriously, it’s really a toss up. Passing as abled has its advantages and disadvantages. 11. The hardest thing to accept about my new reality has been: not being able to do the things my peers do because of the pain it will cause me.

12. Something I never thought I could do with my illness that I did was: work at a summer camp with no amenities.

13. The commercials about my illness: are nonexistent.

14. Something I really miss doing since I was diagnosed is: being able to run a lot. I can’t really run anymore.

15. A new hobby I have taken up since my diagnosis is: visual art – a great, low-impact outlet.

16. If I could have one day of feeling normal again I would: learn kickboxing.

17. Want to know a secret? One thing people say that gets under my skin is: “but you don’t look sick!”

18. When someone is diagnosed I’d like to tell them: It’s not going to be okay, but you’re going to learn how to not be okay and still have a good life.

19. The nicest thing someone did for me when I wasn’t feeling well was: sent me an e-mail. I know that sounds strange, but there was one girl I never got on with in middle school who sent me an email when I was in the hospital about her own secret health struggles. It was very encouraging.

20. The fact that you read this list makes me feel: full of hope for the future!