30 Things About My Invisible Illness You May Not Know

1. The illness I live with is: FIBROMYALGIA.

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

3. But I had symptoms since: 2003-2004. I suspect that I had fibromyalgia as early as 2003-2004 when I had to change careers because working as an administrative assistant doing a lot of data-entry led to a lot pain all over my body. When I started college in 1998, I had strange pains in my neck, arms and back and a neurologist told me that I was “depressed” because she could not find any reason for the pains after many tests. I wasn’t and when the pain went away, I didn’t think about it until it came back.

4. The biggest adjustment I’ve had to make is: not working outside of the home. First I had to stop working full-time and then when I tried working part-time, I spent most of the time feeling extremely ill and popping painkillers to get me through just 3-4 hours of work a day as a tutor. Finally, I decided to devote myself to writing a book, freelance writing and blogging but I do not make enough money to support myself and writing is hard on my body (typing or speaking software are equally as painful which just take out different parts). The biggest adjustment I’ve had to make is losing my financial independence.

5. Most people assume: I am well. When I talk about being sick, they assume I am a hypochrondriac and that this illness is all in my head. They roll their eyes often when I mention being in pain or being tired. They roll their eyes when I tell them I’ve had 12 hours of sleep every other day because my body is so tired.

6. The hardest part about mornings are: that sometimes I cannot get out of bed. I wake up in so much pain that I feel as if I am chained to my bed and it is hard to move. And even if I have had 12 hours of sleep only 4-5 hours of it has been good so I feel exhausted anyway. I wake up so stiff often that I lie in bed for 30 minutes until I feel that I can move.

7. My favorite medical TV show is: my life.

8. A gadget I couldn’t live without is: My Kindle. It has made it so easy for me to read again especially because I have a hard time holding books in my hands without experiencing pain you couldn’t possibly ever imagine. When I first got diagnosed I only listened to audio books because the pain of holding a book or turning pages was so excruciating. Even then because of the pain in my face and ears wearing headphones could often become unbearable.

9. The hardest part about nights are: the chronic insomnia that is a symptom of taking some of medications I take as well as the fibromyalgia. Sometimes falling asleep is easy but only because I’ve popped so many painkillers, muscle relaxers and sleeping pills that I am knocked unconscious. I hate to think what these medications are doing to my body.

10. Each day I take 10-12 pills a day. (No comments, please)

11. Regarding alternative treatments I: am so sick of people who don’t know anything about fibromyalgia suggesting alternative treatments as if they are doctors. I have tried many alternative treatments but even the ones that DO help (nothing offers a cure) are very expensive and are usually not covered by insurance.

12. If I had to choose between an invisible illness or visible I would choose: a visible one because people would just know. I wouldn’t get dirty looks for not offering my seat to pregnant woman and eldery folk. Maybe I would get less eye rolls or condescending remarks. Probably just a pipe dream. I vividly recall every time a wheelchair user got on the bus and people sucked their teeth about having to wait.

13. Regarding working and career: I miss teaching so much sometimes I could cry. I miss getting a steady paycheck. I miss being able to work from 9-5pm. I miss coworkers. I miss being able to think I could take care of myself all by myself. I miss being able to put money towards a 401K. I miss being able to know what I would be doing for work and for a career in the next month, next year. I miss working and having a career that helped me support my sisters financially.

14. People would be surprised to know: that most of the time it feels like my whole body is on fire and several of my limbs are broken. When I told this to someone, they responded with “How would you know what it’s like to be on fire or break a limb? Those are probably much worst than your pain.” What I heard from this was “stop exaggerating.” But this person doesn’t have to daily negotiate the “small stuff” like whether to carry a purse that day because that will cause pain.
15. The hardest thing to accept about my new reality has been: that I need to depend on other people for so much also, that it is beyond exhausting and painful to talk on the phone, hang out with friends, have an instant message conversation, so my new reality is very isolating even when I need people most.

16. Something I never thought I could do with my illness that I did was: begin writing my book and writing and publishing articles. Early on with fibromyalgia, I couldn’t tie my shoelaces much less type anything.

17. The commercials about my illness: are great because they give people exposure to it but awful because then everyone emails me “Have you tried this medication?” Of course I have! Now leave me alone! Please stop suggesting things you think will “cure” my fibromyalgia and just listen when I tell you I’ve had a hard day or a hard week.

18. Something I really miss doing since I was diagnosed is: teaching!

19. It was really hard to have to give up: teaching!

20. A new hobby I have taken up since my diagnosis is: reading the news. I never used to read so many news articles. I know more about the world now than I did before.

21. If I could have one day of feeling normal again I would: go into shock. I can’t even imagine what it’s like to feel healthy.

22. My illness has taught me: to feel more compassionate to people with other illnesses and also that good health is one of the most important things you can have in life.

23. Want to know a secret? One thing people say that gets under my skin is: when people touch me without asking. It’s so painful! And I hate it when people tell me I shouldn’t call myself ‘disabled’ or ‘handicapped.’ Someone even told me I should bake challah using my feet because I can’t use my hands to knead dough (or even cut up my own food oftentimes).

24. But I love it when people: help me without me asking for help. Especially since it’s so hard for me to ask for it. It doesn’t make me feel disabled, it makes me feel loved.

25. My favorite motto, scripture, quote that gets me through tough times is: What doesn’t kill me makes me stronger.

26. When someone is diagnosed I’d like to tell them: it gets easier but in a lot of ways it doesn’t.

27. Something that has surprised me about living with an illness is: that becoming ill led me back to writing.

28. The nicest thing someone did for me when I wasn’t feeling well was: feed me! After writing up a blog like this, it’s hard for me to use my hands so I am grateful when someone handles that for me.

29. I’m involved with Invisible Illness Week because: I think more people should know about invisible illnesses and learn some respect for the people who suffer from them!

30. The fact that you read this list makes me feel: special! Thank you. You know no more about my invisible illness than most of my family members and friends.

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 http://invisibleillnessweek.com.