Tuesday, November 16, 2010


Name: Katie
Location: San Francisco, CA
Age 31
Diagnosed with Crohn’s Disease at age 24 (after nearly 2 years of struggling)
Diagnosed with Wegener’s Disease at age 29


How have your conditions impacted you?  I’ve always maintained this life rule that you never know what anyone is going through — even if you know them extremely well. Becoming ill made me realize just how true this was. I went from being a scholarship athlete to being too weak and ill to get out of bed some mornings. With silent illnesses like Crohn’s and Wegener’s, no one realizes just how sick you truly are until you end up in the hospital. To boot, with the frequent weight loss both diseases enable, I’ve had people tell me “You look amazing!” when I was feeling awful. That’s just strange (and kind of hilarious) to me.

My conditions have also taught me the value of being hyper-aware of how I treat my body — and subsequently have made me very resentful of people who don’t treat theirs with respect (unfair, I know, but true nevertheless). I was vehemently anti-smoking before open lung surgery, but after — my feelings about the absurdity of smoking cigarettes are...ineffable. No one wants tubes in their lungs — no one. I can’t say that enough. I don’t want to dictate anyone’s life choices, but I also don’t want anyone to enable unnecessary damage and pain to themselves -- especially those I know and love.

What would you like for other people to know about your conditions?  You can and will be an extraordinary person even with these kinds of afflictions if you truly want to be. Everyone is going through something, even if you aren’t aware of it -- mine just happens to be bad health.

Also, share the knowledge you gain through your experience! You can help those around you who may be going through something similar in ways you can’t imagine. I feel very lucky to be at ease with a dialogue about Crohn’s and Wegener’s — it helps me to navigate toward a healthier life and possibly a cure for both some day (fingers crossed).

What would you like to tell  someone who is recently diagnosed with your condition(s)?  Everyone will try and give you their version of how to “cure” your ailment — but the honest to goodness truth is, we are all different. People will constantly say “You can eat that?” or “You can do that?” -- you have to know that they likely only have your best interest at heart (no matter how annoying it gets!).  I get deathly ill if I eat peanuts, but I have lots of friends with Crohn’s disease who can eat peanuts until the cows come home.

Tell those you love when you’re not feeling well -- it enables them to give you the support you need. (I still struggle with this though — because I don’t want people to label me as “sick.”)

Katie's favorite quotes:
“Our lives begin to end the day we remain silent about things that matter.” —Martin Luther King Jr.
“Be kind whenever possible. It is always possible.” —Dalai Lama

Thank you so much Katie!
Also, please be sure to visit Katie's blog, Chronic Style.


Minty said...

Another gorgeous portrait of a beautiful person! And now I have learned about another autoimmune disease that I'd never heard of before.

Nordljus {Lonely Librarian} said...

This is such a positive picture and I liked to read her story. I've just been diagnosed with Colitis ulcerosa, which is similar to Crohn's Disease, a few weeks ago and am still trying to come to terms with having a chronic disease which won't just go away. I've no idea what the future will bring but it's good to read about people who've been dealing with it for much longer and still manage to be positive and enjoy life!

daniela siegenthaler said...

beautiful portrait, beautiful woman, and what a gift she and her words are.

wendy clark said...

Katie is an inspiration to all who know her. She has endless energy and her optimism is amazing. She simply will not let this chronic disease define her, rather she defines it.

Lori said...

Your comment regarding everyone else giving you their opinion of what will cure the disease resonates with me. Thanks for your honesty and you are truly a beautiful lady - inside and out.

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