Explaining Your Crohn's Disease to Loved Ones

Unless you walk a mile in our shoes, it is nearly impossible to know what it is like to live with Crohn’s disease. People are always quick to judge how we live our lives, thinking we “brought this on ourselves” through diet and stress, and perhaps it is “just all in our head." And, despite countless efforts to explain to them that we did not, in fact, cause our symptoms, it is important to educate them about our disease and the issues we face so that they can have a better understanding of what we live with daily.

Explain that Crohn's is more than just a “stomach issue”

Many people think that Crohn’s is just a disease that leaves us running to the bathroom frequently. And, as you know, that could not be more wrong. When I was first diagnosed, I also incorrectly assumed that my only symptom would be chronic diarrhea, and it wasn’t until I experienced my first flare of extreme bloating (which was caused by an abscess) that I understood that there is much more to this beast than frequenting the restroom.

I did my best to explain to others that this disease can affect me in many ways, literally from my eyes to my toes. And, while I grew tired of explaining to them all the ways my body was suffering—joint pain, fever, chronic debilitating fatigue, etc.— I knew that the more they understood, the better it would be for our relationship.

Explain that you may have to cancel at the last minute, and you can’t help it

Canceling plans last minute or leaving an event early due to my Crohn’s is all too familiar to me. I know that at times I am letting my loved ones down by not showing up, but by explaining that if I go to the event I will be miserable, low-energy, and constantly running to the bathroom, they are all supportive of me staying home. Let others know the extent of symptoms that you are experiencing so that they can better understand why you are cancelling. And, while saying “I am not feeling well” should be enough, make sure you are as detailed as you feel like being when telling them why you will not be there.

Explain that you do not bring Crohn's symptoms on yourself

How many times has someone said to you, “Well, maybe if you didn’t eat...” or “Maybe you shouldn’t do...” followed by suggested foods we should avoid or activities we shouldn’t engage in? It gets frustrating having those whom we love question our lifestyles, thinking we caused our life-long disease based on poor choices. The best thing we can do is explain what causes Crohn’s, what we have tried to help manage our symptoms, and point them in the right direction such as this community or a local Crohn’s and Colitis Foundation chapter to offer them more resources.

Explain that just because you look well doesn’t mean you feel well

Last but certainly not least, explain that just because you look good on the outside does not mean that you feel the same on the inside. This invisible illness is often an illusion to others, having them thing you are 100% fine when in fact you are anything but. Let your loved ones know that just because they cannot see that you are fatigued, aching, cramping, or suffering from a fistula does not mean that you are not. I am a firm believer in “look good, feel good” but there are times that my symptoms just overtake my body and I am falling apart on the interior regardless of how put together I look on the exterior.

Explaining Crohn’s disease and how it affects our lives to loved ones is critical in order to have healthy relationships. Brushing it under the rug and making it out to be less severe than it may be does not do anyone justice. Be honest, let them know exactly what is going on in your body, and if they want to help, make a suggestion as to what would make you feel better. I truly believe our loved ones just want the best for us and sometimes they just don’t know what to say or recommend because they do not live the same lives we do. So, keep an open mind, let them know how you feel, and know that the more educated they are, the better for both of you.