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Invisible Illness Awareness Week

September 18, 2009 6 comments

I discovered via Random Musings from the Desert that this week – September 14-20 – is National Invisible Chronic Illness Awareness Week.  I was unaware that such a week or an organization exists, but this is awesome!  Too often people suffering from illnesses without obvious symptoms are told it’s all in their heads.  Well, it’s not.  In honor of raising awareness, I decided to complete the groups’ 30 things questionnaire about my own invisible illness.

30 Things About My Invisible Illness You May Not Know

1. The illness I live with is: Irritable Bowel Syndrome

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

3. But I had symptoms since: Well that’s hard to pin down.  I had minor symptoms periodically in my teens, but they grew insanely consistent and nearly unlivable in December 2005.  Imagine the worst stomach bug you’ve ever had.  Now imagine that lasting two months, but only showing up in the mornings and that was my life.

4. The biggest adjustment I’ve had to make is: My diet, my diet, my diet.  IBS caused me to become vegetarian and severely limits what processed foods I can eat.  It’s really hard to tell people “I can’t eat there” or “I can’t eat that,” because if they don’t know I have IBS then they relentlessly question me, mock my food choices, or even just assume that I’m picky and spoiled.

5. Most people assume: That symptoms are consistent.  That it’s my fault because I’m stressed out too much.  It’s true that stress-reduction techniques can help IBS symptoms, but stress does not cause IBS.  It’s true that sometimes I puke but not every time I’m symptomatic.  There’s nothing really consistent about IBS.

6. The hardest part about mornings are: Breakfast.  Do I attempt to eat breakfast? Should I eat even though I don’t feel hungry?  Lots of times I’m nauseous in the mornings.  Even if I’m not nauseous there’s no guarantee that eating breakfast won’t cause me to become symptomatic.

7. My favorite medical TV show is: Scrubs.

8. A gadget I couldn’t live without is: My iPod (not sure what this has to do with anything…..)

9. The hardest part about nights are: Nights are actually usually the easy part for me as long as I ate well that day.

10. Each day I take __ pills & vitamins. I don’t take any consistently. Though I do try to take B12.  When I was first diagnosed, I took a lot more until I got the symptoms under control.  It was mostly herbs and digestive support alt med stuff.

11. Regarding alternative treatments I: would be in hell without them.  The regular medical doctors were only able to give me a pill that added passing out on top of my other symptoms.  A naturopath gave me dietary and exercise advice as well as the dietary supplements previously mentioned.  Changing my diet and exercise routines combined with those pills were a serious life-saver.  I went from being symptomatic every day to about two days a month.

12. If I had to choose between an invisible illness or visible I would choose: An invisible one.  It’s relatively easy to hide if I don’t feel like talking about it, which is most of the time.

13. Regarding working and career: Most of my jobs have been really understanding about it. Yay libraries!

14. People would be surprised to know: That people with IBS are at a higher risk for developing eating disorders, because they come to view food as evil.  This is not a big surprise since people with IBS know that the only time they are guaranteed no symptoms is when their digestive tracts are empty.

15. The hardest thing to accept about my new reality has been: That I can’t eat whatever I want anymore.   Also, the fact that when I’m symptomatic and puking in a public restroom, people always make snarky asides about me being either bulimic or pregnant.

16. Something I never thought I could do with my illness that I did was: There’s nothing I thought I’d never be able to do again that I now can do.  I still can’t eat Pringles, for example. (Hey, I really like Pringles).

17. The commercials about my illness: Make it look like only women have it, and we all bloat up and stand around holding our stomachs.  They also make it seem like a pill could fix it, when it can’t. (yet)

18. Something I really miss doing since I was diagnosed is: Again, being able to eat whatever I want!   Ah, to vary this up, how about puking only occurring the once in a blue moon I got a stomach bug.  Now it’s a monthly occurrence.

19. It was really hard to have to give up: Fried food. I can still eat it somewhat, but it’s risky.  I also miss Doritoes.  And bacon.

20. A new hobby I have taken up since my diagnosis is: Yoga!  It’s so beneficial for IBS symptoms.

21. If I could have one day of feeling normal again I would: (repeating myself) Eat whatever the hell I wanted all day without worrying about how I’d feel later.

22. My illness has taught me: It led me to reading vegetarian cookbooks, which educated me about factory farms (terrible places).  It has also taught me to respect people’s food choices without asking them annoying questions about them.

23. Want to know a secret? One thing people say that gets under my skin is: “It’s your fault because you’re too stressed.”

24. But I love it when people: Make a point to do the extra checking to make sure a restaurant we’re going to will have food I can eat.  I also love the various people who’ve held my hair when I’m throwing up.

25. My favorite motto, scripture, quote that gets me through tough times is: I really don’t have one.

26. When someone is diagnosed I’d like to tell them: Skip the regular doctors and go alt med.  Make lifestyle changes and your symptoms will improve.

27. Something that has surprised me about living with an illness is: How much other people care about my stomach.  In both the good and the bad sense. 😉

28. The nicest thing someone did for me when I wasn’t feeling well was: Anybody who’s held my hair and/or cleaned up for me when I was too ill to is really high up there.

29. I’m involved with Invisible Illness Week because: I think it’s a good cause!  I wasn’t even aware IBS existed when I was first symptomatic.  Awareness of these things is always a good thing.

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