Tuesday, September 10, 2013

Thirty things about my invisible illness that you may not know

It's Invisible Illness Awareness Week.

So, here's the 30 Things About My Illness That You May Not Know:

1. The illness I live with is: Chronic Lyme/fibromyalgia/chronic fatigue syndrome

 2. I was diagnosed with it in the year: 2008

3. But I had symptoms since: 2007

4. The biggest adjustment I’ve had to make is: The end of my marriage

5. Most people assume: That I’ll get well eventually.

 6. The hardest part about mornings are: Waking up exhausted. Every day.

 7. My favorite medical TV show is: House

8. A gadget I couldn’t live without is: iPod, for audiobooks when I have trouble with reading comprehension

 9. The hardest part about nights are: Sleeping alone after so many years

10. Each day I take 22 pills and vitamins. And I’m not currently treating the Lyme. (No comments, please)

11. Regarding alternative treatments I: Have found some incredibly valuable, and others have been a complete waste.

12. If I had to choose between an invisible illness or visible I would choose: Visible, because then people wouldn’t doubt me.

13. Regarding working and career: At 35 I have to figure out how to live and work and what I’m going to do post-divorce, and I’ve got no clue how to balance my disability with earning money.

14. People would be surprised to know: I no longer regret getting sick.

15. The hardest thing to accept about my new reality has been: Losing my marriage.

16. Something I never thought I could do with my illness that I did was: Go on long-ish hikes again.

17. The commercials about my illness: don’t exist.

18. Something I really miss doing since I was diagnosed is: Not worrying about what surprise symptom the next day will bring.

19. It was really hard to have to give up: The illusion that I was in control of my life.

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

21. If I could have one day of feeling normal again I would: Cry, because it would feel like a horrible tease.

22. My illness has taught me: People can surprise the fuck out of you, in both good and bad ways. "Friends" might abandon you, but then other people can amaze you.

23. One thing people say that gets under my skin is: You don’t look like you’re in pain. –OR- You should use natural remedies instead of opiates for your pain. That’s what I would do.

 24. But I love it when people: Encourage me to gently test what I think my limits are, while respecting it when I fail.

25. My favorite motto, scripture, quote that gets me through tough times is: I am much stronger than you think I am.

26. When someone is diagnosed I’d like to tell them: I will listen to you and help where and when I can.

27. Something that has surprised me about living with an illness is: How impossible it is to describe to someone “normal.”

28. The nicest thing someone did for me when I wasn’t feeling well was: Come over to my hotel room with coffee and freshly baked bread to make sure I hadn’t self-harmed.

 29. I’m involved with Invisible Illness Week because: Fuck invisibility.

30. The fact that you read this list makes me feel: Heard.


Of interest may be my response to the same survey back in 2009, found here.

Thursday, August 29, 2013

The Privilege of Health

Someone thanked me yesterday for helping to remind her about a form of privilege that goes unexamined: the privilege that comes with good health. The ability to do what you want, when you want to. Never fearing that you will face rejection or abandonment because of your not-perfect health. Being able to eat without nausea, move without pain, sleep without interruption, and trust that your brain isn't lying to you when it reflects your self-image back at you. The freedom of being believed by doctors, of not being dismissed because you're too young, too female, too hysterical. Of not being told that a stronger person wouldn't have this problem, that your imperfection must be the result of a weak constitution or poor character. The privilege of doing and being without always second-guessing yourself.

Friday, August 16, 2013


I was trying to explain to someone the other day what living with chronic pain is like. How I am never not in pain. And they were all, "What, like now? You're in pain now?" And seemed so surprised, because I seemed OK. I was sitting there, talking, not flinching or moaning. But, yeah, I was in a lot of pain. Because it never goes away. Every second. Every minute. Every hour. Every day. For years. If I'm lucky, it's below a 4 on the 1 - 10 scale. I'm not normally lucky.

Someone joked with me yesterday, "Yeah, I spent the morning thinking I had Lyme, but I just woke up too early."

They didn't mean anything by it. But I wanted to fucking deck them. Lyme is not like missing out on some sleep. It's a monster that's taken away the life I wanted, ruined my marriage, stolen years of my life, left me in pain and depressed, alone and mostly friendless, and medically disabled. I live in fear of the future because I don't know what I'll be able to do when or for how long. Sometimes I question my decision to stay alive. That is my reality. That is living with pain. That is living with chronic illness.