Monday, September 7, 2009

30 Things About My Invisible Illness You May Not Know

National Invisible Chronic Illness Awareness week is September 14-20, 2009. Below are 30 Things About My Invisible Illness You May Not Know. This is one of the fun activities for this year for Invisible Illness Awareness Week.

1. The illness I live with is: Migraine Disease

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

3. But I had symptoms since: 1970

4. The biggest adjustment I've had to make is: Not being able to finish a prescription and have my disease go away.

5. Most people assume: I like to sit in the dark and I have an occasional stutter or speech impediment

6. The hardest part about mornings are: getting up after a rough night

7. My favorite medical TV show is: House

8. A gadget I couldn't live without is: my laptop

9. The hardest part about nights are: staying awake when trying to learn more about my disease

10. Each day I take _15+_ pills & vitamins. (No comments, please)

11. Regarding alternative treatments I: am open to different options, but like a warm shower on the back of my neck or top of my head.

12. If I had to choose between an invisible illness or visible I would choose: invisible. It has made me stronger and taught me to better stand up for myself.

13. Regarding working and career: I am grateful my employer makes accommodations for me without issue

14. People would be surprised to know: how often I am in pain, feel dizzy and nauseous while mostly keeping up with life and work or at least so far keeping up this appearance.

15. The hardest thing to accept about my new reality has been: that I may not be able to keep up this appearance much longer.

16. Something I never thought I could do with my illness that I did was: learn as much about it as I can so I could tell if a doctor really wasn't an expert in this medical area.

17. The commercials about my illness: are not adequate enough.

18. Something I really miss doing since I was diagnosed is: whatever I want; whenever I want; where ever I want. I have to think about everything before I do it; before I eat it; where I am; where the lights are, etc. Things aren't as spontaneous as they used to be.

19. It was really hard to have to give up: chocolate, coffee and other foods; unconditional sports (I can do some sports, but I have to wear a hat, sunglasses, limit running, exertion, etc)

20. A new hobby I have taken up since my diagnosis is: reading, journaling, researching, teaching

21. If I could have one day of feeling normal again I would: want to get out and visit with people I haven't seen in a while.

22. My illness has taught me: patience, determination and to trust my instincts

23. Want to know a secret? One thing people say that gets under my skin is: it's only a headache

24. But I love it when people: ask questions and want to learn especially if it is to help themselves or someone they know

25. My favorite motto, scripture, quote that gets me through tough times is: This too shall pass.

26. When someone is diagnosed I’d like to tell them: to learn as much as you can and ask questions until you understand so you can be a good partner with your doctor. If your doctor won't partner with you, find one who will.

27. Something that has surprised me about living with an illness is: how many doctors I have gone to, who were supposed to be specialists, really don't understand my disease or want to understand it. Some doctors seem to want to use a one size fits all resolution when it clearly is not the right solution for me.

28. The nicest thing someone did for me when I wasn’t feeling well was: bring me some safe food to eat and spend some quiet time with me without even being asked.

29. I’m involved with Invisible Illness Week because: I want to share my experiences and hope to show others they are not alone.

30. The fact that you read this list makes me feel: that maybe I've been able to make a difference for someone else.

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


Jasmine said...

You're so right about losing spontaneity. Gone are the days where I get a phone call from a friend wanting to meet up without the added worry on my end regarding triggers or having to say 'No' because I don't feel well enough.

That's fantastic your job accommodates you!

WinnyNinny PooPoo said...

I too have a great employer. At least we don't have to fight to get simple accommodations! I felt for you - 36 years without a diagnosis..oooh dear.

Migraine Chick said...

Great post!Thank you so much for sharing!

MigrainePuppet said...

Hello Jasmine - We give up so much more than we realize. I think I learned a lot about myself when putting together this list. I am so grateful my job has worked with me.

MigrainePuppet said...

Hi Winny - It makes it so much easier when your employer works with you. I'm so glad yours works with you too!

My original doctor told me I only had headaches and there was nothing he could do for me. It took me that long and many, many times of holding my head together before realizing it must be more. I could never imagine what Migraines must be like if this was what headaches were like...

MigrainePuppet said...

Thank you, Migraine Chick. Honestly, it is hard for me to share which is a big reason I started blogging.

chrissy said...

thanks for nice we can all come together with these questions and learn about eachother.....its amazing how we are so much alike in the disease.....:)

MigrainePuppet said...

You are so right Chrissy. I have enjoyed learning about one and another too when reading through the different answers.