Editor’s note: In the second part of the series “Crohn’s Disease Questions,” Mary Horsley discusses comments about IBD that can hurt. Read the first part of the series here.
To begin this series, I had originally planned on discussing “Basic Questions.” Instead, I think I’ll focus on questions and comments that can hurt.
Questions that can hurt: Some of these may be asked by people who truly care, but they hurt all the same. Assuming, commenting, or asking questions without doing research can lead to hurt feelings and a sense of guilt and self-blame.
What’s wrong with you? Are you better today? Are you pregnant? Are you just lazy and don’t want to work? Why can’t you work? Is it just a pooping disease, or, you need to go to the bathroom again? How do you stay so thin, or, why aren’t you skinny? Is it really that bad? How and why are you so tired if you sleep all of the time and you haven’t done anything? Are you sure you’re sick? Aren’t you too young to be this sick? Are you really trying to get better and cure yourself? Do you have to talk about it? Is it for attention? Why don’t you calm down? So, you poop yourself a lot? Do you really want a “poop bag?” How can you live with this? My stomach hurts a lot, do I have it, too? What did you do to get Crohn’s? Isn’t it just a gluten thing?
Everyone with a chronic illness has heard some type of comment or concern about their illness, when the reality is that it’s their illness and no one else’s. These comments can hurt people who already are hurting.
For IBD patients, many have found treatments to help manage their Crohn’s. Without a cure, we have to be in tune with our bodies and know what works for each of us, because no two patients will suffer the same way.
For some, diets have helped IBD patients manage their symptoms, and for others, it takes medications like injections or infusions to bring them to remission. For still others, a mixture of both can work wonders, but many still battle daily, and not by their own choosing.
Recently, I was contacted through my Facebook blog with some insensitive comments stating that I chose to be sick, and my journey to remission was for attention. They said I should lay off the gluten and I wouldn’t be “shitting so much” (their words, not mine.)
Now, if I was someone else, this comment may have struck a nerve or really upset me. I admit that initially, I was outraged. But I know my body. I know what bothers my Crohn’s, and I know that I have tried everything imaginable until this point. I’ve had six different medication plans, including the current one, Entyvio. I’ve tried cutting out foods and tried diets or meals to help with irritation. With as much stress that Crohn’s causes, receiving hurtful comments with hidden jabs at my illness definitely doesn’t make me feel any better.
To think that patients choose to go to the doctor so often or make last-minute ER trips is wrong. These comments only further distress patients and cause feelings of guilt or self-blame. To think that we haven’t done our research or looked into healing ourselves further adds to the frustration.
If you must comment or question our illness, I always suggest researching what you’re asking first to avoid any miscommunication. What could be an innocent comment can easily be taken negatively when tone is lost online or when patients are already feeling defensive about things that others don’t understand.
Blaming the patient is never OK. Blaming patients suffering from IBD for something they cannot control is like blaming someone for their height, eye color, or anything else they have no say about. To question their weight, pregnancy status, work ethic, fatigue, or bathroom habits is just not good judgment.
When asking these questions, consider what a patient has gone through. When asking if it is a gluten problem, know that the patient has probably been tested more than once. When asking about weight gain or weight loss, know that the patient could be on steroids or suffering from malnutrition. When asking about a day with a tummy ache, know that the patient has probably suffered years while just waiting on their diagnosis.
IBD patients see a number of doctors and specialists. IBD patients go through a number of blood tests and invasive scopes, biopsies, X-rays, and trips to the ER due to pain, and they know their bodies pretty well after years of battling. These years of battling and the disease itself are not cured by calming down, and it is so much more than a “pooping disease.”
Crohn’s and IBD are autoimmune diseases that have an unknown cause. They don’t just happen because of a patient’s lack of care or through lifestyle choices. We did not cause this. We did not ask for this. And we certainly don’t look forward to feeling as bad as we do, nor do we want to suffer from all of the terrible symptoms we have.
For me, It Could Be Worse.
Note: IBD News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of IBD News Today, or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to IBD.