Happy World IBD Day! Well a day late, but better late than never, right?
This international awareness day holds a special place in my heart for the obvious reason of bringing awareness to IBD and autoimmune diseases in general, but also because a year ago I finally got the courage to share my story!
On May 19, 2017, I was a few months into another flare, feeling more defeated and overwhelmed than ever. I remember spending my lunch reading all of the stories people were sharing on Instagram and thinking how similar my story was to many of them. I admired how many people had the guts to talk about such intimate issues. A combination of my flare drugs and the emotions of the day reading all of these stories had me inspired, so I opened the Notes section of my phone and just started writing. I finally felt that it was the right time and I am glad that I did because sharing my story has brought me more joy than I could have ever imagined.
For those of you who don’t know me – I am one of the 10 MILLION people worldwide who suffer from IBD (wild, right?!) – specifically Crohn’s Disease. Receiving this diagnosis in late 2007 changed my life forever. Since, it has been a continuously evolving, uphill battle. Autoimmune diseases are particularly interesting, I heard them described pretty well today by Dr. Rob Buckman, whose work was featured on 99% Invisible’s episode called Breaking Bad News:
Autoimmune diseases are “a group of diseases in which the body defense’s attack itself and which you become literally your own worst enemy”
This can be incredibly life altering when you have to suddenly change everything you have ever known. But it hasn’t all been bad! Now, instead of viewing it as one of my shortcomings and something I was always hiding and apologizing for, it is finally something I am finally able to say has been the force behind one of my more proud accomplishments, which is my blog! & while I’m not drowning in sponsorships, I have finally confronted many of those negative feelings that derive from an invisible illness and try to turn them into a learning lesson, which has been a truly cathartic process.
Invisible illness can do quite a bit a number of your self image and self confidence, which was pretty apparent in my life. While physically I have looked very different over the years, it was how I saw myself that was the most alarming. Dealing with these issues is very isolating and can cause you to pull back from relationships, to treat others differently or to act what may be seemingly strange to others who aren’t privy to what IBD does to your body due to your sudden appearance and disappearance when uncomfortable … all of which I had been doing for the last decade.
But establishing a voice with the support of family and friends that later morphed into The Peaks & The Valleys has given me the confidence I needed to deal with Crohn’s and has now poured over into all other aspects of my life. While I am sad I have had to let the blog slow down so much due to other activities, I have to report my health is in a really great place! I tried to write a post about my 8th Entyvio dose but it was so uneventful that I decided to delete it. I finally have the confidence to talk about Crohn’s to others, even my new coworkers!
Living this truth and having this voice has not only deepened my existing relationships, but also brought me so many new, enriching ones as well. This year has been quite eventful and with all of them, The Peaks & The Valleys has made a guest appearance. I am quite humbled by people’s willingness to share their story or thoughts with me, whether it is via email, Instagram, in person or something quick over text. I would have never guessed this was what would have come from sharing such an intimate part of my life.
So, what’s next? I have decided to jump another hurdle now that my body is allowing me to move more – and that is running the the Rock & Roll Half Marathon! You can find me July 22, 2018, downtown Chicago, running 13.1 miles. I am still working on how to get involved with Crohn’s & Colitis Foundation’s Illinois Chapter & Team Challenge (if any of you are involved with CCF or Team Challenge, can you help me get a connection in there?! It has been surprisingly difficult to get a response from anyone.) But, any advice is always appreciated! Until then, I will be continuing to train and balance this flare-free chapter of life!