We're Afraid Too

As someone living with Crohn’s disease, I can easily, at any moment in time, list a number of things that I’m afraid of.

Things Crohn's makes me afraid of

• My health failing
• Being hospitalized
• Becoming a burden to my husband or my parents
• Experiencing unbearable pain
• Having to pause my life (again)
• Being lonely

Now, I think about my friends and family, the ones who don’t live with a chronic illness and I think about how it's likely only one of the things on that list is something they can really understand - being lonely. Because anyone who is anyone can experience loneliness, right?

How can I better communicate Crohn's to friends or family?

I often wonder how to better communicate or explain that when we’re sick, we’re afraid of a lot of things, including being left behind. I’ve noticed that people struggle sometimes to relate to me when I’m ill, wondering how to act or what to say when my disease is flaring. I’ve also noticed that people stay away, instead, because they are afraid of saying or doing the wrong thing.

In the past, when I would experience significant periods of health decline, scattered hospitalizations and countless other repercussions of living with Crohn’s disease, I sometimes felt isolated from the people in my life. Chronic illness isn’t common for younger people, and yet, here we are, doing our best to play the cards we were dealt.

Symptoms of a Crohn's flare

I was 23 when I started experiencing consistent symptoms of Crohn’s disease. Symptoms that were by no means glamorous. A flare (or for me, about 6.5 years of time) is often plagued with nausea, vomiting, diarrhea, frequent trips to the bathroom, sometimes even not getting there in time, fevers, fatigue, night sweats, joint pain, mouth sores, and other uncomfortable (and embarrassing) challenges.

Not only did I usually not want to be seen during that time, but some of the people I would’ve invited over professed a major fear of vomiting or diarrhea. So, I felt like I was out of sight, and out of mind to them. I was struggling, feeling terrible and weak and vulnerable too, and my fears about my health and my life were amplified by feeling lonely too. I stopped reaching out as much because I was afraid of the answer, and the cycle grew. My list of visitors decreased. My mental health struggled.

Battling Crohn's as a young person with friends who don't understand

I’ve come to realize that it’s important for the general (healthy) public to acknowledge that IBD affects a lot of young people. According to the Crohn’s and Colitis Foundation, Crohn’s disease and ulcerative colitis can occur at any age, but people are more frequently diagnosed between the ages of 15-35. Think about that time in your life - high school, college, graduate school, being a young professional, building your social and romantic life. Everything is so foundational.

Now think about the fact that many patients experience symptoms for a long time before they are diagnosed, or symptoms appear so severe that they’re hospitalized until a diagnosis can be reached, leaving them sicker and sicker without a quick way to really get back on their feet.

Most of our friends have never considered what life with an autoimmune disease would be like. Most of us hadn’t previously, either.

Ask friends to show up for support

So, while my healthy friends might be afraid to come over, they might be worried about seeing me at my weakest, being grossed out by my symptoms, or even thinking that what I have might be contagious, I am realizing that sometimes I have to tell them that I’m scared too.

And that being lonely, it makes my fears louder. That sometimes, their company goes a long way. I remind them that I’ll do my best to throw up or have diarrhea out of sight, that Crohn’s disease can’t be caught, and that their love will speak louder than my fears. Sometimes, I just have to ask them to show up.