1. The illnesses I live with are:
2. I was diagnosed with it in the year:
1992, the summer before I turned three.
3. But I had symptoms since:
My whole life, it’s a genetic condition.
4. The biggest adjustment I’ve had to make is:
I’ve been adjusting/adapting to activities my whole life.
5. Most people assume:
That I’m ‘lucky’ because I didn’t have to run in gym class. One girl even signed my yearbook that way! I try to explain that EDS is a chronic condition that causes me a lot of pain and will only get worse as I get older, and that I would love to be able to run, but most people don’t take the time to listen when I explain.
6. The hardest part about mornings are:
The stiffness in my joints, and adjusting to whatever joints I hurt while I was asleep.
7. My favorite medical TV show is:
I don’t really watch any frequently, but I’ll watch House when there’s nothing else on.
8. A gadget I couldn’t live without is:
Keyboard—I learned to type when I was seven, because holding a pencil/pen has always been difficult for me. I haven’t used a pencil in years except for scan trons.
9. The hardest part about nights is:
The stress I’ve put on my joints during the day builds up into a throbbing pain in my joints and it’s hard to find a comfortable position to sleep in.
10. Each day I take __ pills & vitamins:
Seven different medications, some of those are multiple pills, and some are multiple times a day.
11. Regarding alternative treatments I:
I have benefited from physical therapy (to build up the muscles around frequently injured joints to protect them) and massage therapy.
12. If I had to choose between an invisible illness or visible I would choose:
I’ve lived my whole life with EDS, I’ll stick with the devil I know.
13. Regarding working and career:
I’ve had to modify my dreams a bit, there are some things my body cannot do.
14. People would be surprised to know:
How much pain I consider ‘bearable’.
15. The hardest thing to accept about my new reality has been:
That I can’t do anything I put my mind to—there are some things my body will never be able to do.
16. Something I never thought I could do with my illness that I did was:
I hiked over a mile on the AT on crutches when I was 14.
17. The commercials about my illness:
Do not exist.
18. Something I really miss doing since I was diagnosed is:
I can’t remember life before—I was 2.
19. It was really hard to have to give up:
The illusion that I was like other kids—my disastrous foray into soccer in elementary school is a good example.
20. A new hobby I have taken up since my diagnosis is:
Swimming is the only safe exercise I can do.
21. If I could have one day of feeling normal again I would:
I’ve never really felt normal, but if I could run/jump for just a little while, I would really appreciate it.
22. My illness has taught me:
Compassion. Empathy. There’s no right way to live life.
23. Want to know a secret? One thing people say that gets under my skin is:
“It could be worse.”
24. But I love it when people:
Ask questions, and take my physical limitations into consideration when making plans.
25. My favorite motto, scripture, quote that gets me through tough times is:
“there’s going to come a day when you feel better.
you’ll rise up free and easy on that day.
and float from branch to branch,
lighter than the air.
just when that day is coming, who can say? who can say?”
From Up The Wolves, a Mountain Goats song
26. When someone is diagnosed I’d like to tell them:
It’s not the end of the world—just a new beginning.
27. Something that has surprised me about living with an illness is:
How absolutely terrible people can be. In high school gym I hurt my knee once, and the gym teacher didn’t believe me despite my presence on the flag list (kids to watch out for), and my explanation of EDS, because she ‘knew what knee problems look like”. When the class went back inside (we were on the far side of the football field) she left me there. I couldn’t walk very well, so it took me awhile to hop close enough to the school that I could get the attention of anyone. I hurt my knee more because I didn’t stay off it after I originally injured it, because no one would listen to me. At the time, this gym teacher was the head of the department.
28. The nicest thing someone did for me when I wasn’t feeling well was
Asking how I’m doing and caring about the answer goes a long way.
29. I’m involved with Invisible Illness Week because:
EDS is part of who I am.
30. The fact that you read this list makes me feel: