Hi! I'm Sam and I have Crohn's Disease.

 

I also have a soft spot for emotionally-withholding cats, a penchant for making playlists, and a degree in English lit.

This blog, however, is mainly about the Crohn's Disease part.

I was diagnosed in 2010 after a lifetime of having a "nervous stomach" and about a year of said stomach being so "nervous" that I couldn't eat anything but plain crackers. The diagnosis came a few short days after my eighteenth birthday and just before my high school's turnabout dance, which taught me a valuable lesson about chronic illness very early—it doesn't work very well with your schedule.

I went on medicine and was (mostly) fine for a long time. I never had the stomach of a normal person, and I got tired way quicker than my other college friends, but I was determined to live life as a "normal kid," no matter how much denial that required.

Since then, my cavalier attitude about my fairly serious symptoms has landed me in the hospital. It's gotten me into some flares so bad that I spent a year on steroids. Since then, I’ve added diagnoses like asthma, anemia and chronic idiopathic urticaria to my bag of tricks, and I’ve started on multiple immune-suppressing biologics (a particularly tricky complication in the age of COVID).

But my experience also led me to advocacy. I started off blogging about life with Crohn’s and posting on social media. From there, opportunities arose to share my story in attempts to move the policy needle—speaking in the press, to the FDA, and even in the halls of Congress about issues important to patients, like health care affordability and the administrative burden of care. Now, I work as a senior digital director at one of the largest think tanks in the country using skills that I developed as a patient to tell important stories to millions of people every day.

Ultimately I am here, writing this blog, because I am a writer by trade who also happens to have Crohn's Disease. Writing is my favorite way of coping with the parts of sickness that are challenging, isolating, infuriating, confusing. I am writing this blog for me, but also for anyone out there who can’t put their feelings into words.

Because people with chronic illnesses? We are here. We’re in your workout class and your board room and your classroom and your group chat. We’re surviving and sometimes thriving. Our lives are more dynamic than you know. And I want to talk about all of it.

Like the complex relationship my disease has with food. And the toll physical illness can take on your mental health. And how patients can advocate for themselves, personally and politically. Basically, I want a place where we can all feel a little less alone.

My hope is that this blog can serve as a resource not only for patients but for their loved ones who may be looking for insight into what being sick is like. Sometimes sharing a link to a blog post is easier than getting vulnerable and trying to explain things in your own words. Have a question for me or a specific topic you'd like me to consider covering? Head over to my contact page