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.
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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.
Ahh! Some people’s way of thinking is horrible! If it were that simple, wouldn’t you have “healed” yourself by now? If it were that simple, I’d still have a colon! Comments like that…people just don’t get it.
Some people. Smh. Internet doctors I guess!
Thank you for sharing this. Yes every individual with IBD is different and I was just asked again yesterday if it was contagious and what foods could I eat blah blah. I have so much trouble trying to explain to people what Crohn’s is as I still don’t really get it though I know it has changed my life dramatically over 15+ years. Also you might like to add that once you have an auto immune disease you’re likely to get another! I now have fibromyalgia as well and joint and body pain is also a common side affect of Crohn’s and depression. It’s so hard to put every symptom or side effect all on paper but various support groups share so many horror stories and the other issues people experience are what make you say, “yes, it could of been worse, for me anyway”.
Belinda, thank you for reading and reaching out! I absolutely agree with you, as I am experiencing some fibro symptoms as well. I hate that you suffer, I hope you have found relief. My blog, I started because of such a lack of information about Crohn’s. Its such a hard disease to explain since everyone seems to be different. I wish you well!
my daughter has Crohn’s and she is so depressed because she is a teen and her friend gossiped about it to the whole school and now they think she’s a freak! she is scared because she is different, people ask her all those questions! I’ve tried everything I can to make her feel better before it gets worse (mentally). I will continue telling her how powerful she is but it would be nice if you could comment something nice as a fellow survivor, please?
I am so sorry her friend gosspied about her! I remember being shy and nervous about my Crohn’s and all of the not so fun symptoms but now I take what I know and share it my way. If people become uncomfortable or suggest embarrassment, then I think that is on them and their own hesitation for discussing their own bowels or bodies. She must remember that she is not alone! There are a ton of Facebook support groups that even I am a member of. The battle is not easy and I know she is a warrior having to deal with something out of her control. I hope she finds relief and better friends who actually want to understand what she is going through. Its not just a ‘pooping disease’. *hugs*
Hi Mary.
Is your daughter seeing a psychologist or counsellor? If not it maybe helpful. Just dealing with gossipy teenagers is hard enough let alone dealing with Crohn’s too.
Could her teachers or older students help her do an educational day/flyer/poster to dispel any myths (about IBD/Crohn’s) floating around the school?
It is a difficult disease to deal with alone, has she looked online for a teen support group? I know there is at least one in Australia and I think USA, U.K. and Canada have them as well (not sure where you are).
Give her a hug from me 💐🤗
Marianne, I do not have any kids, I am the one who suffers with crohn’s. I was seeing a therapist for a while until my record was public with the rest of my doctors. I did not like that people were reading about my notes. I want to say may is Crohn’s and Colitis month, perhaps she could create something to celebrate that month when it comes up. I absolutely think she should make something to help with the drama at school. Hugs to you and yours!
A lot of people are misdiagnosed. Diverticulosis, lactose intolerant and being allergic to milk. All causes the same pain and a colonoscopy can tell if the bowel is inflamed. Diet has a lot to do with it and the lab work that is done shows if you are deficient in the vitamins and the necessary nutrients that you get from food. Some people chose to continue to eat things that cause them to have pain and bowel movements and continue to complain. Chrohns is a life style change.
I understand that Crohn’s is a lifestyle change but not all patients are alike. Some eat salad. Some don’t. Some have dairy. Some don’t. Some eat spicy foods. Some don’t. There is no set guideline for what will or won’t help. And getting a diagnosis takes years, but because of all of the testing. Yes, some are misdiagnosed, rarely, but doctors don’t put the patients through the long wait for nothing, most diagnosed do have the disease. And diet is not a cure all, so eating things that you say causes them to have pain, it is a shown fact that there is no proof to diet causing it. Without or with diet, the inflammation and disease are still there regardless.
Mary –
I’m sorry you are suffering and I can relate to some of your opinions.
Your primary themes are that nobody can say anything to you without offending you, nobody understands, and there is nothing you can do anyway because everyone is different.
In my opinion, that stance is extremely dismissive and self centered. In my experience, adopting a “victim attitude” is one of the biggest obstacles to becoming healthy.
You have the power. You have the forum. Consider the power of a positive attitude and a proactive stance versus a “whoa is me but it could be worse, sob sob.” You’d be doing yourself and your readers a favor.
Excuse me!!!!
So you’re a doctor??
I bet you have no idea
If I where you I would apologise to the people commenting here
And dissapear back to that rock you crawled out from
Yes I’ve had Crohns for over 30 years
What’s your experience apart from idiotic assumptions
Greg, I hope this comment was not meant for me?
Diet: According to the Crohn’s and Colitis Foundation of America, diet does not cause irritable bowel disease nor will it cure ulcerative colitis or Crohn’s disease.
http://www.crohnscolitisfoundation.org/living-with-crohns-colitis/
In my experience, the crohns and colitis foundation does not have much to offer. If I had followed their published guidelines I would still be dying.
Secondly the SCD diet works wonders if the patient has the ability and willpower to stick with it.
Robert I’m sorry you feel this way but I disagree. Not one of the questions or comments I mentioned are okay. They may be all right for you, but I found when you hear them repeatedly they start to become bothersome. The whole theme of my blog is to tell my patient perspective while informing others of what I go through and what they can expect to go through. I have specified time and time and again For Me it could be worse. You and I and everyone else will receive these negative comments, and I do receive backlash from people like you. I’m sorry you don’t agree with my opinion but that is exactly what it is, my opinion. I disagree that diet works wonders, there is no science to prove that claim. And yes it may help some but I am correct in that every patient is different and will suffer differently. But what may ail you does not ail me and vice verses. And no, people shouldn’t make these comments to the chronically ill. There’s no need for it unless it is supportive commentary. And my stance may be dismissive but I have every right to be that way. This is my way of dealing with my disease, not yours. And I may have a dismissive attitude but no one has the right to suggest or tell me how to deal with my disease, just like I don’t have a right to tell you. I do not openly accept the victim attitude, but everyone has a right to know what to say, what not to say, and what to expect with their disease. And, a positive attitude never healed anyone’s insides. But thanks for considering my story a ‘sob story, you said it not I. Willpower, stress, lifestyle or diet will not heal your insides with active disease, trust that I’ve tried everything. But thanks for your insight.
Lol, you are the one writing opinion columns on the internet but again I guess everyone else’s “opinion” is not as good as yours.
I feel sad for you cause I’ve been in the pit of despair. I hope you can break out someday rather than wallow in self pity. And yes, positive attitudes do heal.
And again I disagree. You are the one who chose to comment on said opinion piece. I never said my opinion was better than anyone’s, you make a lot of assumptions about me.
Nothing fixes or cures Crohn’s, not even a positive outlook.
Robert, I disagree with what you have said. These columns are meant for the writers to express their feelings, their experiences, what information the writers have come across in regards to their condition. I do not believe Mary is in a victim mode. She is simply telling others with IBD what all she has come across. Those comments that she wrote about that are commonly phrased to those who suffer with IBD can become annoying, repetitive or after a while plain out disrespectful. I dont know whether or not you have IBD or if you are just out to bash columns, but its not polite or respectful doing so at her opinions or experiences.
Now, having a positive attitude or at least attempting to doesn’t cure IBD, but it can help in other ways. It helps you from spiraling into a serious depression, keeps you from allowing the disease to consume your life 100%, but can not cure and does not heal the disease. I am sorry to see that you are taking people opinions and experiences to a level that you do not agree and feel the need to tell others that they are in the wrong. Her opinion regarding these comments are that of which she has heard or talked to others that also get offended or dislike them. Personally I feel “You’re too young to be sick” (I didnt know I had to be a certain age to qualify being the right age to be sick),”You are taking too many medications” (I take them so that I can live),”I’ve had a stomach virus so I know how you feel” (No. Stomach virus’s do not compare to Crohn’s), “Must be nice getting to stay home and not work” (No.. My health is to the point where I can not work. Its not thank I dont want to, its that I am not able to. Im at home sick. That right there is not fun), “This diet works wonders to people with Crohn’s” (Everyone who has IBD does not have the same symptoms. Our bodies react in certain ways. What one person can eat, others may not.). Maybe those apply to some and not others. But it is in our right opinion what works.
Its not that im out to react to everyone’s comments or columns. Just the way you expressed your opinions, was degrading to Mary’s post. If you dont have anything nice to say, or politely critic, then you should not write and attack at the writer. She didnt say anything wrong or offensive to others. Just what she is feeling, her experiences, and what she has learned from others.
Vic, dietary deficiencies are oftentimes caused when diseased sections of bowel cannot absorb the nutrients. This is one reason why diet may make no difference with Crohn’s. BTW if you have a disease you might want to at least do enough research to SPELL it correctly.
Hi Mary, thanks for this. We are not defined by our disease we just happen to suffer from it’s side effects and I truly believe we must talk about it so more people understand. Good on you. Even when I have been fit and well and had a routine colonoscopy you can see my disease is still there grumbling away. My maiden name was Horsley too, I am originally from the UK but now live in Western Australia.
Oh wow! How fun that we have a last name in common! I am sad to read that toy have this shitty disease, too…pun intended. I am happy for readers like toy who reach out and can understand what I’m trying to say and do. I share it for those who don’t share their journeys, as we are all different. I agree with you and thank you! And Horsley is my married name, my husbands family is from Ohio but I TBI k they have English decendants. How cool. Hugs!
Mary, I am in agreement that most people do not understand Crohns or UC. The past few years we have seen an increased popularity in cleansing your system, probiotics, concern about gluten, etc. Advice is often given- have you tried probiotics (yes before anyone else had heard of them and at one time they helped), “my daughter has IBS and we have to cleanse her system about once a month”, etc. I was dx at 17 first with UC, later with Crohns. I have had several surgeries and so many hospitalizations I have lost count. It is not a life anyone would choose. There are over 200 genetic markers, my sister and nephew have UC. It is a real, very complicated disease. We are warriors.
I couldn’t agree with you more 🙂
Peopl sometimes speak without thinking. I’ve had Crohns for 38 years and I think I may have heard it all. I was suprised by some remarks of family members though. I have try to educate people about IBD and most try to understand. What people say is no big deal to me. My life goes on. For the young with IBD,be tough. Don’t let people get you down. Be kind to others even when they say off things. Life is short and we have no time for BS.
Marry Ann,
You can tell your daughter about the US Olympic swimming champion Kathlin Baker, who has Crohn’s . And she could ask the kids if they would treat her the same.
That’s a great suggestion for her daughter! I loved watched her win silver!
Mary Horsley,
I don’t think Robert was trying to offend you in any way or said anything negative. In fact I found his comments to be positive. But it’s all in how you chose to perceive it. The way I understood his comments is that he would like to help you to suffer less and I think it’s very nice of him. You may not agree with his ideas but that doesn’t make them wrong. You are sharing your expirience and he is sharing his. You always say, everyone is different, right? So for some people alternative medicine does work and why is it not ok to share their experience? even though it might not help you specifically, it may help other people, because it DOES work for some and especially children!
Horrible illness I hate everything about it . It’s been affecting me for over 10 yrs. Weight loss, pain ,tiredness ,can’t eat comfortably. Can’t plan in advance for meals out. Aching joints ,self confidence. Lists endless
People without the illness will never know how it can and does effect everyday life.
You are exactly right. People will never understand unless they go through the same thing.