Monday, September 7, 2009

30 Things About My Invisible Illness...

From the Invisible Illness Week website:

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! Well 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. And don’t forget to add the last paragraph for people know where to find us!

30 Things About My Invisible Illness You May Not Know

1. The illnesses I live with are: Chronic Fatigue and Immune Dysfunction Syndrome (CFIDS...a.k.a. Chronic Fatigue Syndrome (CFS) or Myalgic Encephalomyelitis (ME)), Irritable Bowel Syndrome (IBS), Polycystic Ovarian Syndrome (PCOS), asthma, and more...

2. I was diagnosed with it in the year: 2005, 1999, 2003, 1998, respectively.

3. But I had symptoms since: 2000 (probably earlier), don't remember, since puberty, 1996.

From this point on, I will be answering questions primarily with CFIDS/CFS/ME in mind.

4. The biggest adjustment I've had to make is: strictly limiting my physical activities and outings.

5. Most people assume: I'm young and healthy because that's how I appear on the outside.

6. The hardest part about mornings are: waking up

7. My favorite medical TV show is: House

8. A gadget I couldn't live without is: my two alarm clocks.

9. The hardest part about nights are: falling and staying asleep.

10. Each day I take 12-15 pills & vitamins. I also get regular allergy shots (immunotherapy) and additional shots for my CFIDS. See Current Medications and Supplements.

11. Regarding alternative treatments I: am open to them as long as data supports their efficacy and my physician approves their use.

12. If I had to choose between an invisible illness or visible I would choose: visible - people wouldn't question my illness if they could see it.

13. Regarding working and career: I will work as long as I am physically able. I am working to further my career as if I will be healthy the rest of my life. However, I live with the uncertainty that my illness may force me to leave the workforce altogether.

14. People would be surprised to know: I am a classically trained singer who was once on her way to an operatic career. Sadly, I no longer sing. I also wanted to attend medical school, but my illness forced me to choose another career path.

15. The hardest thing to accept about my new reality has been: all of my physical limitations.

16. Something I never thought I could do with my illness that I did was: become an advocate and meet with members of the US Congress on Capitol Hill.

17. The commercials about my illness: do not exist.

18. Some things I really miss doing since I was diagnosed are: international travel, martial arts, hanging out with friends.

19. It was really hard to have to give up: physical activity.

20. A new hobby I have taken up since my diagnosis is: advocacy for people with CFS.

21. If I could have one day of feeling normal again I would: cook, clean, and go grocery shopping so that my husband wouldn't have to.

22. My illness has taught me: patience.

23. Want to know a secret? One thing people say (especially when they know I am sick) that gets under my skin is: "You look good!" Of course, I look good on the outside. I have an INVISIBLE illness. I feel terrible on the inside.

24. But I love it when people: genuinely want to learn more about my illness.

25. My favorite motto, scripture, quote that gets me through tough times is: "Everything happens for a reason." (Also, "What doesn't kill you makes you stronger.")

26. When someone is diagnosed I’d like to tell them: there is a vast online community of others with this disease who understand what you are going through. There is no need to feel alone.

27. Something that has surprised me about living with an illness is: the amount of support that is out there, as well as the amount of disbelief that is out there.

28. The nicest thing someone did for me when I wasn't feeling well was: make me homemade chicken soup and bring it to me in bed (my husband Kenny has done this on more than one occasion).

29. I’m involved with Invisible Illness Week because: I am passionate about CFS education and advocacy.

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

Find out more about National Invisible Chronic Illness Awareness Week at

Today's Activities: home (hooray for Labor Day). Today's Most Annoying Symptoms: headache, dull pain in lymph nodes in neck, muscle fatigue, sinus pressure.

Mood (10 is best): 6
Energy (10 is best): 5 (hooray for long weekends!)
Physical Discomfort (10 is worst): 4


upnorth said...

I agree with much of this: ditto - thanks for posting.

You were a singer??? Too cool. Do you still sing at all or is it too fatiguing?

alyson said...

Feel free to use this on your blog! I got it from

Yes, I studied classical voice at a conservatory-like music school. I don't sing anymore because it's too loud (go figure) and too fatiguing.

Actually, I do sing silly songs from time to time to my cat and my husband...but I don't use my opera voice...

Laurel said...

Great list, Alyson. I don't know why exactly, but #21 brought a tear to my eye.

Well done, and thanks for being such a great advocate out there.

Renee said...

This is great, Alyson...Thanks for bringing it to our attention and for sharing too...

alyson said...

Hi Laurel and Renee,

Thanks for your comments. I always enjoy what you have to say - even if it's just to say hello!

kitty said...

I love this Alyson! I'm thinking of doing it for this year's awareness week! x