My 8-Step Guide to Telling People About My Crohn's Disease for the First Time


One way to let others know you are sick is by sharing a link to your blog that details your disease (surprise, Facebook friends I rarely talk to in person!). Just kidding. In all seriousness, letting others know about your illness for the first time can be an extremely difficult task. With time, I have learned what works and what does not work, depending on the person and situation.

Sometimes I am met with a blank response or a referral to a friend’s mom’s brother-in-law who has a neighbor with Crohn’s disease. Other times, the person I am telling reveals that they are pretty familiar with my disease because it has affected them in a more direct way. For some reason, I tend to get very emotional when someone can relate to me on a personal level; hearing a story that is similar to my own experience is touching (and I’m not an emotional person, so I really mean it).

No matter what the end result of the conversation is, starting the dialogue is the hardest part. If only there was a service that allowed you to outsource the “I have a chronic illness” conversation to a trained professional (wow, maybe I’m on to something here). Of course there is no perfect script to eloquently reveal such a deep and personal aspect of your life, but in time I have found that it is easiest to follow a reasonably predetermined conversational structure.

This is the way I typically set up a conversation with a friend whom I am telling about my disease. Timing and setting are also important, especially because it will be a private conversation. Note, results will vary depending on the person’s level of knowledge, sympathy, maturity and cold-heartedness.

1. Introduce my disease and offer a brief explanation. The first thing I ask is if the person knows what Crohn’s disease is. The most common answer is that they have heard of it but do not know what the illness entails. Here I provide a brief overview of my disease, symptoms, medication side effects and limitations I have that they may observe. Going back to the level of knowledge and maturity I referenced before, sometimes it is necessary to explain that no, Crohn’s disease is not contagious, I did not inflict it upon myself and there is no cure. It can be frustrating when a person claims you can cure your autoimmune disease through nutrition or exercise, but just remember they are only trying to be helpful. My favorite response to that is, “Trust me, I have tried.”

2. Only share what I am comfortable sharing. If the person you are telling does not need to know your entire journey from the beginning and every obstacle you have faced, I don’t feel obligated to share that with them. Sometimes less is more, depending on the reason you are confiding in that person. 

3. Explain why I am telling them. Whether the reason is because you need your friend to understand your behavior, grab a missed assignment for you from school, or you have an upcoming surgery and need help afterward, I think it is important to make the person feel important. You are choosing to share personal information with them, and that is significant.

4. If necessary, request they keep the information private. One too many times I have had friends gossip feverishly about my health without my permission. This is one of the reasons I am selective in who I trust (this is not as relevant to me now because I am open about my illness. In being so transparent, I am the one who has the power, not my gossipy friends). In the early stages of my disease, I was not as open about it and felt devastated when I had friends betray me in this sense. Sometimes people do not understand that your medical condition is a private matter, so the best way to keep things under wraps is by reiterating the fact that you appreciate their confidentiality.

5. I always share a bright side. I am a big believer in the phrase “everything happens for a reason.” In telling my story with Crohn’s disease or explaining the illness to others, I make a conscious effort to maintain an optimistic undertone. This can be a hard step for those just diagnosed and coming to terms with a disease, but in time, I believe no struggle is too large to provide a small satisfaction.

6. Be patient and put myself in their shoes. Being on the receiving end of this conversation can be just as hard as the reverse. It was not until I was diagnosed with Crohn’s disease that I educated myself on autoimmune illnesses, so I am not sure how I would react prior to having a base of knowledge to draw from. Some people will not know the right things to say to please you, so just be understanding and thankful that you have given them a reason to learn more about your disease.

7. Offer to accept any questions. A lot of times people need time to process and may not say everything they want to say right off the bat in that initial conversation. I always end the conversation with something along the lines of, “I don’t mind talking about this with you and if you have any questions please ask me.” It makes me feel good when people are curious to learn more about my illness. This could be my personal opinion, but it is great knowing that another person is thinking about what you told them and cares enough to follow up on the subject.

8. Don’t underestimate people. I am a great judge of character, but I find it very difficult to predict how individuals react to such heavy news. It is often a pleasant surprise to see those who I did not think would care for more than five minutes follow up with me weeks later, offering support and help.

Sometimes, the timing isn’t right and you’re forced to tell someone over text or in a rush. I have had this happen multiple times. I sent a text telling a friend for the first time that I had this major disease, I wouldn’t be in class for a week, and would appreciate them sending me their notes. Wow, way to drop a bomb, Ash! Although this isn’t ideal because it leaves the person guessing, I recommend being willing to offer more information at a later date upon request. Remember, the person you are telling does not know any better than you how to handle this delicate situation and may not want to push their boundaries or feel as if they are meddling into your personal life. A great way to spread awareness and establish comfort with uncomfortable topics is through confident communication. Practice makes perfect!

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