Invisible Illness Awareness Week begins on Monday. A "fill-in-the-blank" list has been circulating social media, with readers who live with an invisible illness asked to contribute their own experiences. My answers appear in standard font. Prompts for discussion provided by the list writer are in italics.
30 Things About My Invisible Illness You May Not Know
1. The illness I live with is: Obsessive-Compulsive Disorder
2. I was diagnosed with it in the year: 1991 (age 19)
3. But I had symptoms since: As far back as I can remember.
4. The biggest adjustment I've had to make is: Learning to control it without medication. For me, it is possible. Right now. In the past I needed medication. For others, they need medication. I may need it in the future.
5. Most people assume: That people with OCD always have visible habits, like constantly washing their hands. Some do. Or that people with OCD always have an obsession with cleanliness. Again, some do. My compulsive habits are not as visible.
6. The hardest part about mornings [is]: Getting out of the house on time. One of my compulsive habits is checking locks.
7. My favorite medical TV show is: I don't have one now, but around the time I was diagnosed I loved Dr. Quinn, Medicine Woman.
8. A gadget I couldn’t live without is: My iPhone. It allows me to do a lot of the compulsive checking remotely, and there are apps for anxiety relief.
9. The hardest part about nights [is]: Getting to sleep if I'm in the middle of obsessing over something.
10. Each day I take: I'm not currently on medication. As I said, that could change.
11. Regarding alternative treatments: I have not had need at this time to investigate that.
12. If I had to choose between an invisible illness or visible I would choose: I'd rather deal with what I know.
13. Regarding working and career: I can pass off some of it as being overly anal, which is an asset for someone who does editorial work and critiques others' work as part of her job. Other times, co-workers will sometimes see me peering in my car, checking to make sure everything is turned off and the car is in park, and ask if I locked my keys in the car.
14. People would be surprised to know: I'm not a clean freak or particularly organized (except in a few specific, invisible areas).
15. The hardest thing to accept about my new reality has been: It's never been a "new" reality. I've had forms of it as far back as I can remember.
16. Something I never thought I could do with my illness that I did was: Travel by plane. I'm not much of a traveler, but I always assumed I'd obsess over the various parts of plane travel or that I'd obsess about not being able to control the means of travel (unlike driving where the driver has control). For me anyway, the few times I've traveled by plane have not been a problem (at least not with the OCD).
17. The commercials about my illness: I hardly ever watch network or cable TV anymore, so I don't know if there are any.
18. Something I really miss doing since I was diagnosed is: Not applicable.
19. It was really hard to have to give up: Not applicable.
20. A new hobby I have taken up since my diagnosis is: Reading ebooks. I used to hoard books. I still have a lot of print books, but now I mostly buy books on my e-reader.
21. If I could have one day of feeling normal again: I would be happy to never have to check anything ever again.
22. My illness has taught me: Not to trust my "gut reaction," at least not without getting outside confirmation from someone else first. Lots of people put faith in their "intuition." I know that, for me, it could be a compulsive thought process that needs to be "interrupted."
23. Want to know a secret? One thing people say that gets under my skin is: Some version of "noticing" that I'm doing something "odd," such as checking my car. If I need help, I'll ask!
24. But I love it when people: Don't notice anything is wrong.
25. My favorite motto, scripture, [or] quote that gets me through tough times is: "It is our choices, Harry, that show what we truly are, far more than our abilities" (Dumbledore, Harry Potter and the Chamber of Secrets by J. K. Rowling).
26. When someone is diagnosed I'd like to tell them: You may go through periods where the symptoms won't be so bad, and others where they flare up and become excruciating. Do what works for you to get through them.
For example, after I became Catholic, I felt compulsions to write down lists of sins and go to confession as often as I could. The only thing that helped was to deliberately go less often and only to confess what I could remember in the moment. A lot of conservative Catholics get scandalized at the idea of not going to confession as often or doing thorough examinations of conscience. I can only tell them those examens and frequent confession are hell for a scrupulous/OCD person.
27. Something that has surprised me about living with an illness is: In my case, I can occasionally forget I have it. It's not that way for many people, but sometimes I can genuinely believe that I'm just a tad too anal.
28. The nicest thing someone did for me when I wasn't feeling well was: Listen. It's not easy to listen to someone obsessing over whether or not she had an accident with her car. (Driving is something I obsess about. I wish I could give it up, but it's the chauffeur's decade off.) There are a couple of people in my life who will allow me to work out those obsessive thoughts with them, which makes it possible for me to continue to be able to drive. As a single person, I have to be able to drive.
29. I'm involved with Invisible Illness Week because: Some friends on social media are sharing about their invisible illnesses, and I wanted to do my part so they feel a little less alone.
30. The fact that you read this list makes me feel: Grateful. Thank you.
(Image: Young woman, looking sad; Pixabay.)
