"What’s Crohn's?" How I Explain My Condition to Others
After being sick for a very long time, I was finally diagnosed with Crohn’s disease back in 2009. By this point, I’d been in and out of doctors offices and hospitals, and on and off of many medications. I was enduring a plethora of unending tests and appointments, and my family and friends just wanted to see me "better."
It was difficult to explain to them in the beginning that even though I finally had a correct diagnosis and we knew what was at the root cause of my health problems that first, it would take some time to find the right medication to help me. Even then it would have to be the right dose and the right frequency.
And second, while medication could relieve many of my symptoms and improve my quality of life, Crohn's disease only had treatment options, there was no cure. I would never be fully healthy again.
Explaining Crohn's disease
I quickly learned that this line of communication and this type of response from me wasn't the most helpful. It left my friends and family feeling discouraged and therefore it left me feeling unsupported – neither option ideal.
Here's how I've changed things up in the last decade of living with Crohn's disease. I use something like an "elevator speech," a quick sort of rehearsed way for explaining Crohn's disease and the way it impacts my life, but I usually try to leave it on a positive note.
My "elevator speech"
Here's an example of how I quickly explain Crohn's:
I live with an autoimmune disease called Crohn's disease that causes ulceration and inflammation in my GI tract, meaning anywhere food goes – from my mouth, to my intestines, and even through my rectum. Sorry, I'm not trying to be crass, I just want you to understand that Crohn’s disease can affect people in a lot of different places.
My disease activity is usually located in my small intestine, which if you're thinking about it from the outside, it looks like it's in the lower left side of my abdomen. I receive IV medication every 5 weeks to help keep my disease activity at bay, and for the last 5 years, I've been in pretty good shape.
But a flare-up of symptoms or inflammation can happen at any time, and often those flare ups send me to the hospital for special imaging like a CT scan or MRI, and/or IV medication like steroids to help calm the process down. Overall, my health has been managed pretty good since my daughter was born in 2019, and I work very hard to keep it that way.
How much to share about your Crohn's?
If this is a question you struggle to answer, I completely understand. It took me several years and a lot of practice to get comfortable with my own sort of standard/canned response. To this day, my response may vary a bit depending on who I'm talking to.
If I'm talking to for example, coworkers or acquaintances, I may include less information/specifics. If I'm talking to close friends or family, I may be more detailed or share more than is included in the response above. I trust my instincts and know that whomever I'm talking to can always choose to ask questions if they want to know more, or to walk away or change the subject if they've heard enough.
Know your comfort level when explaining
My best advice, though sounding silly, is to practice your response. Chances are if you're out and about, especially in places or at events where food is involved or you are having active symptoms, you're going to want to know how to talk to people about what’s happening with and to your body.
This is a good excuse to just talk out loud when you're alone in your room, or practice with a trusted person like your parents or best friend. The key is for you to only include what you feel comfortable sharing, nothing more.
How do people respond?
I've found that especially in recent years, I’ve gotten minimal responses. My "elevator speech" about living with Crohn’s disease seems to be enough for people to understand the situation, without overburdening them with details or medical jargon.
And I've found that those who are really interested or want to show up in a more intimate way will ask questions, and will choose to learn more, even on their own, so they can be helpful and supportive.
If you’ve spent time thinking about explaining Crohn's disease to others, does any of this feel helpful? Do you have other tips or recommendations you’d share with our community?
How open are you about being diagnosed with IBD?