After being diagnosed with Crohn's disease, simply having a conversation about it could be difficult. Being diagnosed with a chronic illness is already incredibly difficult and burdensome, but navigating Crohn’s disease in particular involves just as many external factors as internal. The disease comes with a laundry list of stigmas, primarily stemming from the incorrect notion that Crohn’s disease is a “pooping disease,” or something that could be easily fixed with increased dietary measures.
The truth of the matter is that Crohn’s disease is an autoimmune disease, one whose underlying fault is with the immune system. A person’s daily struggle with Crohn’s disease is actually the result of inflammation caused by an overactive immune system. The symptoms and lifestyle adjustments a person must make revolve around this constant attacking of the gastrointestinal tract, and this is where diet comes into play.
It is ultimately up to the individual to figure out how to navigate life with Crohn’s disease, because every person’s body is unique. Every person experiences slightly different symptoms, and so the only person who is fully equipped to navigate the disease is the person with the disease. Understanding this simple truth should undermine any attempts to make suggestions to a person on how they should navigate their disease, though many will still feel compelled to offer their own well-meaning advice.
Anyone bringing up questions about Crohn’s disease or offering suggestions to a person with Crohn’s disease should know that, like all who must live with a chronic illness, that person is living with a heightened awareness of their bodies, and has a greater understanding of their bodies than the average person. In that sense, talking about the disease is all about where the questioner is coming from, and offering advice is rarely—though it can be—helpful. Here are some starting points for asking questions or giving helpful advice.
Questions to consider
The best way to begin a conversation about a person’s Crohn’s disease is to make sure that you understand or at least have a working understanding of what the disease is. Asking a person what Crohn’s disease is could be avoided with a simple search on the internet. With a solid general understanding, you could lead with the question: What does living with Crohn’s disease look like for you? This lets a person know that you want to know about their specific, personal battle with the disease, which will make them more receptive to your questions or concerns.
Another excellent question that you could ask to get the conversation started is: What foods can you eat? The intention behind asking this question should always be to get to know what the person can and cannot eat, and will be especially welcome if you let them know that you are asking because you want to make eating with them or eating out easier on them. Always ask questions from a place of empathy, and with the ultimate goal of improving their overall quality of life through friendship or relationship.
The question of splurging is a good example of a question that depends on tone and intention. It is okay to ask a person if they feel comfortable splurging, but the way that you ask is important. Asking, “are you able to splurge every once in a while?” is a lot different than asking, “can’t you just splurge every once in a while?” The first question is sincere and lets the person know that you actually want to know the answer. The second feels condescending and dismissive, as though the person is taking the disease too seriously.
Once you know where a person stands with Crohn’s disease, you can begin to ask questions that relate to their everyday struggle. Questions about how the individual is doing on a particular day are more welcome than asking about the trajectory of the disease, since Crohn’s is a lifelong chronic illness with no known cure. Always remember to ask about the person, too, and try not to make a loved one feel like the disease has become their identity.
What not to ask
Everyone will respond to questioning differently, and you will know right away whether a question that you’ve asked has missed the mark or caused an offence. You shouldn’t feel afraid to approach someone about their disease, because simply asking can show that person that you care and want to help. That being said, there are some things that tend to come across poorly, and there are some questions that should be avoided when trying to comfort someone with Crohn’s disease.
Though it may seem a natural question to ask, asking a person with Crohn’s disease if they have tried adjusting their diet is not the best way to approach caring for them. Questioning a person with Crohn’s disease about adjusting their diet would be like asking someone with the flu if they have tried staying hydrated. It is one of the primary challenges that a person with Crohn’s disease faces, one that doctors and specialists walk a person through, and one that they must intentionally think about every day.
Some people will be patient with you, or be able to turn a bad question into something positive, but it is easy for a person with Crohn’s disease to feel isolated by questions that purposefully or accidently isolate them. Most of these questions begin with the statement: have you tried? Be wary of starting a question or suggestion with this phrase, as it leads to all manner of assumptions, miscommunications, and negative outcomes.
Straying from “Have you tried?” questions
These are some of the most common questions that a person with Crohn’s disease faces, and unfortunately, they are also the least welcome. Whenever you ask a person with Crohn’s disease if they have tried a certain method or tried to achieve a certain outcome, you are also implicitly suggesting that the individual is not doing everything that they could be to combat the symptoms of their disease. Even a well-meaning question can hurt feelings this way.
Asking questions about specialized dietary measures such as going “gluten-free” or taking fish oil supplements could miss their mark. These and other dietary trends tend to lack concrete or distinguishable benefits, and are riddled with misconceptions and differing viewpoints. Moreover, a person with Crohn’s disease may not benefit from what would otherwise be considered healthy food. They are put on prescribed diets by specialized dieticians, and it safe to assume that they have the greatest understanding of what a person needs.
You should always avoid assumptions when bringing up suggestions, and it is generally safer to ask a question than to make a suggestion. Don’t suggest that a person try to lower their stress levels or worry about the disease less; ask if there is anything you can do to help take some of the pressure off of them. Caring for someone with Crohn’s disease is all about coming to an understanding with the individual and never assuming or being dismissive regarding the nature or difficulty of living with the disease.
Crohn’s disease patients see doctors and specialists regularly. Trust that these doctors are working with the patient to figure out the best route forward in battling the disease, and tread lightly if you are going to make suggestions on top of a doctor’s counsel. Those living with Crohn’s disease come to know their bodies extremely well, so be careful not to undermine their own authority over their bodily functions.
In every question, and with all things when caring for someone with Crohn’s disease, simply think about what you are asking, and ask yourself how it might be perceived.