A few months ago, I received a call that would stop me in my tracks: would I like to share my thoughts on what defines a quality gastroenterologist at this year's Digestive Diseases Week (#DDW2018)? I think that I said "YES!" before the question was even finished. I was so excited that I got right to work. In some ways, I knew exactly what I'd want to say, but in a lot of other ways, I struggled to find just the right words. From a patient's perspective - or at least THIS

Chronic illness can be tough and lonely. It seems that most people can appreciate that fact and they know what it generally means to be lonely. But “lonely” takes on a new definition that goes deeper and darker with the personalized, persistent, and relentless class of illnesses considered to be chronic, or lifelong. When I was diagnosed, I quickly learned this new definition for lonely. While doctors were considering a diagnosis of Crohn’s disease, and determining a cours

Visit The Mighty to view a version of this article. It was a beautiful, hazy day in August when I was formally diagnosed with Crohn’s disease. From over the phone, the doctor’s words seemed in such stark contrast to my surroundings that I had trouble digesting them. It was warm, and I was exhausted; all I could mutter was, “OK.” Appreciating the reality of being diagnosed with a lifelong, incurable chronic illness wasn’t on my mind. Instead, assigning a name to the beast taki

When I’m not feeling well, it can be hard to take care of me AND all of the responsibilities that I take on, including parenting two young boys. Because chronic illness requires a life-long dedication, I don’t always have the option to ask for help when things get a little tough. If I did, I wouldn’t always have someone available when things are REALLY bad. It’s a judgement call. So, I have to get creative in my planning and parenting, to make sure that I can still keep th

Recently, I wrote an email to my specialist and felt the need to say, “Sorry for rambling!” at the end. But is this really how I should be feeling after communicating with my doctor? I’ve been with this doctor for quite a few years, and yet I still feel the need to say, “I’m sorry” whenever I worry about being a burden to him or his practice. I think that it’s because I appreciate his care so much. When I realized what I was doing, I stopped to think -- I know that he woul

A weird thing happened recently. I had arrived a few minutes late to a packed party and was taking off my coat when the words, “This is the girl with Crohn’s!” were shouted across the busy room. I hadn’t had a chance to meet the recipient of this information, so my family member shared my diagnosis before even sharing my name. This isn’t the first time that something like this has happened, either. Two common themes exist in these occurrences: strangers are present in a p

Symptoms can manifest slowly. Or, they can rear their ugly head with a shocking strength that would throw even the most steady-footed individuals into a spiral that feels unending. I remember quite vividly what I’ve dubbed as “the last morning of normalcy” (Or rather, the first day of “Chronically Jess”), when I suddenly ran to the bathroom and wouldn’t emerge unafraid for a few years. On that morning, bags were packed and the car was almost loaded. I was so happy and care