National Invisible Chronic Illness Awareness Week

30 Things About My Invisible Illness You May Not Know


1. The illness I live with is: Severe Migraine Disease

2. I was diagnosed with it in the year: 2000

3. But I had symptoms since: I was 5 or 6, that woulda been in the late 80s

4. The biggest adjustment I’ve had to make is: accepting my limitations, but still keeping my identity. I am more than just a migraine sufferer.

5. Most people assume: that it can't be as bad as I make it out to.. Trust me, its worse.

6. The hardest part about mornings is: that first thought of "does my head hurt?", having to determine if its just every day regular head pain that will ease up a little as I get around, or if its the pain that will get worse and land me in the ER if I get up and get around.

7. My favorite medical TV show is: House MD. Its fictional, but I always hope that when I go to a new doctor, they will be driven to find out what is really going on like he is.

8. A gadget I couldn’t live without is: My Blackberry. I do everything with it, track my headaches, check my emails, write my blog, keep my twitter and facebook updated.. everything.

9. The hardest part about nights is: laying in bed in pain so bad that I can't sleep.

10. Each day I take _2_ pills & vitamins. (No comments, please).. Its more if I have to take the "as needed" medicines.

11. Regarding alternative treatments I: have tried some, and currently trying some, and would love more suggestions.. But the lime on the forehead trick doesn't work (for me..), so please don't suggest it.

12. If I had to choose between an invisible illness or visible I would choose: invisible. It allows me to have a little bit of control on what I let people know about.

13. Regarding working and career: I work full time 40 hours a week, but I have FMLA for my migraines, which doesn't give me more paid time off work (even though some of my co-workers seem to think that's the case..), it just makes the time I do have to take off not count against me.

14. People would be surprised to know: that every time you see me, there is a 90% chance that I am wanting to die because I am hurting so bad. And when I am hurting that bad I am constantly feeling guilty for not being able to work hard, not being able to cook my husband dinner, not being able to clean up the house, I worry about when I become a mother, will I be able to take care of my child. There isn't a minute that goes by that I am not thinking about migraines in some way.

15. The hardest thing to accept about my new reality has been: that I can't do everything when I want to. I have to plan my activities, and be prepared. I can't travel anywhere without packing a while bag of medication.

16. Something I never thought I could do with my illness that I did was: get promoted within a year and a half at my new job.

17. The commercials about my illness: I only see a few, for triptans, and for Excedrine Migraine, which I've been told NOT to take for my migraines)

18. Something I really miss doing since I was diagnosed is: not worrying.

19. It was really hard to have to give up: peanut butter. I'm just now realizing it was triggering a lot of my bad headaches, and its so good, I hate not being able to have it.

20. A new hobby I have taken up since my diagnosis is: journaling. I write a lot more. I find that its important to get my feelings out somehow, or the fear and sadness will build up inside me until I want to burst.

21. If I could have one day of feeling normal again I would: what is normal?

22. My illness has taught me: that I am stronger than I think I am, and to not judge other people as quickly, I don't know what kind of battle they are fighting.

23. Want to know a secret? One thing people say that gets under my skin is: that I'm faking.

24. But I love it when people: are conscious of what they are doing and saying, like not slamming a door hard when my head is killing me.

25. My favorite motto, scripture, quote that gets me through tough times is: "I have been through worse before, I am strong"

26. When someone is diagnosed I’d like to tell them: Its not the end of the world and you are more than your disease.

27. Something that has surprised me about living with an illness is: how understanding and amazing my husband is.

28. The nicest thing someone did for me when I wasn’t feeling well was: I am always so grateful when someone asks how I am doing and actually listens for a true answer, or when a family takes time away from their lives to take me to the doctor because I'm not able to drive myself.

29. I’m involved with Invisible Illness Week because: people need to be heard, and people need to learn from another.

30. The fact that you read this list makes me feel: glad, glad that you care enough to learn about my disease and my life.

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 www.invisibleillness.com