Thursday, September 03, 2009

“30 Things About My Invisible Illness You May Not Know

We’ve all seen the list “20 things about me” “50 thing about me you didn’t know…” They can actually be interesting if you want to get to know the person better! We’ll we’ve got one I haven’t seen anywhere yet, “30 Things About My Invisible Illness You May Not Know.”

Just copy and paste it below and put it up on your blog, send it to your friends, paste in on Facebook (if it’s too long put it in your “notes” section.)

Let’s spread the word about II Week this way and it’s a wonderful way to share a little bit about your life.

30 Things About My Invisible Illness You May Not Know

1. The illness I live with is: ME/CFS, Fibromyalgia (and mental illnesses in various stages of 'recovery')
2. I was diagnosed with it in the year: Fibro - 2003
3. But I had symptoms since: 2003
4. The biggest adjustment I’ve had to make is: HUGE reduction in activities of all kinds, especially physical and social
5. Most people assume: I'm selfish, lazy, and NOT SICK
6. The hardest part about mornings are: the pain. Getting out of bed, waiting for the meds to kick in, I feel the sickest.
7. My favorite medical TV show is: I can't afford cable, but I do like Medical Mysteries
8. A gadget I couldn’t live without is: My computer (and internet), my blender, microwave.
9. The hardest part about nights are: the pain. Being unable to get quality sleep.
10. Each day I take 12 -15 pills & vitamins. (No comments, please)
11. Regarding alternative treatments I: Wish I could afford to get some. Please don't suggest any to me unless you are willing to pay for it.
12. If I had to choose between an invisible illness or visible I would choose: I honestly don't know and I don't think there is any point in questioning it. I have invisible illnesses - there are pros and cons to it. I can hide if I want to, but I also find myself being treated like I'm not sick or hurting by people who don't know.
13. Regarding working and career: I try not to think about it. Obviously I don't have a career, but I "work" at being a health advocate and volunteering for WAMCARE, as well as trying to do the full-time job it is to take care of myself and heal all my emotional and physical wounds.
14. People would be surprised to know: I care a LOT about other people. I want to make the world a better place for everybody.
15. The hardest thing to accept about my new reality has been: trying to feel like a worthy human being despite my inability to "work"
16. Something I never thought I could do with my illness that I did was: turn it into an advantage by seeking out other people who share it and supporting them
17. The commercials about my illness: what commercials?
18. Something I really miss doing since I was diagnosed is: camping, roller-coasters
19. It was really hard to have to give up: denial
20. A new hobby I have taken up since my diagnosis is: beading
21. If I could have one day of feeling normal again I would: spend time outdoors with friends
22. My illness has taught me: the value of true friends
23. Want to know a secret? One thing people say that gets under my skin is: "You should lose weight and exercise"
24. But I love it when people: understand
25. My favorite motto, scripture, quote that gets me through tough times is:

Enough. These few words are enough.
If not these words, this breath.
If not this breath, this sitting here.

- David Whyte

26. When someone is diagnosed I’d like to tell them: There are thousands of us out here, reach out, create a community of support around you.
27. Something that has surprised me about living with an illness is: Sometimes you can forget.
28. The nicest thing someone did for me when I wasn’t feeling well was: my dishes
29. I’m involved with Invisible Illness Week because: it is important that the world knows about all the people suffering in invisibility. It is important to have your voice heard.
30. The fact that you read this list makes me feel: grateful


I sometimes write things that I don't really mean or believe. These are not to be taken literally, nor as definitive statements about me or my beliefs. Thoughts and emotions are transient, and I reserve the right to change my mind, generalize, exaggerate, give strong opinions, or write other possibly offensive statements. I don't lie, but I may say something that's not true to check whether I believe it or not, or to make a point. Call it creative license. This is my blog, and do have the right to say what I want. I'm using it in creatively therapeutic ways. Whatever the reader may think of me and my words, please believe that my core intentions are always good and I never willingly hurt anyone.