A question for the Ulcerative Colitis Community

Thinking about how other people talk about your or your loved one’s condition, what are some words or perceptions that make you cringe? What do you wish people wouldn’t say?

Answers from the Community

My most hated one is, “If you just lost weight, you wouldn’t need all that medication, and you wouldn’t have diabetes. It’s because of the way you eat and the fact that you are overweight.”

Actually a lot of people don’t understand what an IBD is and including media. This question came to mind, several years ago I actually did an interview for a CVS affiliate where I was living at the time and they wanted to know about my treatment and all this stuff. And I let them know it’s an IBD, what that was and explain ulcerative colitis because a lot of people hadn’t heard about it at that point several years ago. And when they put it all together and they laid it out, I watched the segment on the news, like everybody else. And I was like, “Oh, I thought I was doing a good thing. I’m giving it a voice, showing people what it’s about.” And they called it a pooping disease and it’s so much more than just a pooping disease. That’s the literal term they used pooping disease and it made me cringe and it made me feel like this is just a joke. And so I asked them to retract that off the website and it already aired but they didn’t air it over and over again. But yeah, it was just cringe-worthy to me at that point.

I think that there’s just a lot of stigma around a disease that involves the bowels. It’s just an uncomfortable subject to talk about, and some people just are very repulsed by it. And so I think when there’s a negative reaction to me describing it, that’s something that I don’t really appreciate. I wish people wouldn’t say things like, “Oh, well I couldn’t even tell you are sick,” because even though it is an invisible illness, it doesn’t make it any less of an actual issue for me. And then another thing is just people trying to give their own advice about how to make it better for me or shaming me because of the medications I’ve chosen, and telling me that I should take a natural approach with oils or something like that. Something that I really don’t like when people do. Obviously, it’s my decision and my doctor’s, and we have picked what is the best option for me. No one else should really get a say in the way that I maintain my health.

I think the most hurtful thing anyone has ever said about my disease would be my grandfather. He’s a little bit out there, kind of hippie, very alternative medicine. He once sent an email reply to my entire extended family, so this is like 50 people on this one Listserv, and the original email was from my dad telling the family that I wasn’t doing so well and I was probably going to have surgery. This is back when I was 22, maybe 21, 22. My grandpa replied to the entire family copied, “Well, if you just learn to control your stress, you wouldn’t be this sick. This is just stress manifesting physically.” That was really hurtful. I actually blocked him from finding out medical information about me for a really long time, because obviously stress plays a role in an autoimmune disease, but at that point I was so severely sick that, obviously I’m stressed. I’m shitting my pants or going to the bathroom 25 times a day, straight bloody diarrhea. Obviously that’s stressful, so thanks for your unsolicited advice. If I could only just meditate and learn to control my stress, obviously my disease would go away, which is totally false. I think what my grandpa didn’t realize is that on my mom’s side of the family, I found out this runs in my family. My great grandmother had it on my mom’s side, and one of my mom’s first cousins has it, and one of my mom’s aunts has it. It’s clearly running in my family. It’s not a direct genetic … Obviously nobody in my immediate family is affected, but it seems like there’s one person per generation, roughly, amongst the extended family that gets ulcerative colitis. Clearly there’s some sort of genetic or familial inheritance pattern going on. The idea that this was my fault, that I stressed so much about school and about work and about coming out as gay, if I just could learn to control my stress? That’s really hurtful. I didn’t choose this disease. I didn’t choose to have the trauma that I went through as an adolescent and as a young adult. I didn’t choose any of that. The idea that I chose that kind of stress and trauma, and then chose to be this sick, is extremely hurtful. Also, unsolicited advice about diet and … mostly diet, is really annoying, because believe me, I tried every single diet in a last ditch attempt to save my colon. While some of them improved my symptoms a little bit and I still continue to follow a modified diet now as a way of controlling inflammation, I don’t … Everyone is so unique, and unsolicited advice is so annoying.

The only thing that ever bothers me is once in a while, when I have had an accident when I couldn’t get to the bathroom quick enough. My daughter being a teenager has made fun of me. Since it’s my daughter it doesn’t bother me as much, but it’s still kind of hurtful. And I think when I see the doctor and they base everything based on what my colonoscopy shows versus if I’m telling them that even though we may not have the most severe case it’s still bothering me, still impacting my life. I think they downplay that quite a bit.

So one of the things commonly associated with people that have IBS or irritable bowel syndrome or any gastrointestinal issues is when people make bathroom jokes or diarrhea jokes. And it’s a big part of comedy and if you watch movies or TV shows, it’s a big part of that. That stuff really makes me very anxious because that is my life. The bathroom is my life, unfortunately for not all the time, thankfully. So those things really make me uncomfortable when people make jokes about passing gas or having diarrhea or needing to use the bathroom or going on yourself, those are jokes for a large population. But for someone like me, that is my life. So those definitely get under my skin. And it’s so interesting how when people experience diarrhea, stomach illness, they’ll experience it for maybe a day, two days, and then they bounce back and you’ll see that they’ve changed. Their face, the color from their face fades. Their weakly, their body has no energy. And at that moment they understand a modicum of what people with IBS or UC go through. But they bounce back. My husband had a stomach flu for two or three days when we were visiting the middle East and he bounced back. And I was telling him, I was like, “The way you bounced back, I can never bounce back from that. This is my life.” So definitely I would tell those people have some courtesy and compassion because bathroom humor is not a joke for people like me.

The main perception for me is that it’s only a digestive disorder. I mean, overall, I’d say ulcerative colitis really lives up to being auto-immune in that more of my symptoms don’t relate to my digestive tract.

You know, I don’t think I have anything. There’s not a lot that makes me cringe from that side of things. I’m pretty understandable. And I think a lot of the times I’ve never heard anybody say anything antagonistic or mean or whatever. So, unfortunately I don’t really have a great answer to that because I’ve never experienced it myself and I think people have a pretty decent understanding of what it is. And I’ve never once experienced any kind of cringe worthy statements or perceptions that they have. I think this disease is very all encompassing and I don’t think that there is one particular thing that makes me cringe. I guess the only thing I could really say is maybe the lack of knowledge for folks who aren’t familiar with it, which is something I’ve very rarely experienced but I don’t think that there’s anything in particular that makes me cringe.

One of the biggest things I hate that people say is when I’m in a flare and they haven’t seen me for a while, the first thing they say to me is, “Wow. You look so good. You lost so much weight.” And it’s just like, “Okay, well, just take a bunch of laxatives and don’t eat anything, and you could lose weight too.” I wasn’t having any fun and I didn’t do anything besides be sick to lose it. It’s not a healthy thing. Then, another thing that bothers me is when I tell them about my condition and I don’t feel well, the first thing is like, “Oh, just change your diet, and do this and do that.” If you look up diets for colitis, it always states that this may work for one person and not another. Yeah, there’s things you could eat in a flare that would be better than whatever, but it’s really up to the person’s own judgment of what they should or shouldn’t eat because of how it effects their body. Then, another thing is, “Well, you tried all these medications and then you cut out certain things in your diet, why don’t you just get your intestines removed, the part that’s bothering you?” That should be last resort. I don’t want to do that. So it’s just people giving me medical advice when they’re not a doctor and they don’t really understand what I’m going through.

Definitely the thing that makes me cringe the most is people comparing my inflammatory bowel disease or ulcerative colitis with their irritable bowel syndrome. It’s a very common thing that people don’t, I guess, notice that there’s a huge difference between IBS and IBD. And it all around just really bugs me when people try to compare their condition to mine, especially if they’re not even the same condition. I mean, that’s just a really common thing that people who have IBD hate when their condition is compared to irritable bowel syndrome, because, I mean, compared to how serious IBD can be, IBS is honestly kind of trivial. That’s definitely what makes me cringe the most. I wish people would not try to compare or understand the condition that you can really only understand if you have yourself.

Two things that come off the top of my head right away, are one, is when people are trying to sympathize with the type of pain that I experience, or something that triggers my symptoms that I eat, and they’re like, “Oh yeah, that gives me stomach cramps too,” or they try to equate it to menstrual cramps. People have no idea the severity of the pain, and I know that they’re trying to sympathize, but relating in that way is super obnoxious, because it’s not even close. Like someone who’s trying to avoid something to be healthy, it’s not the same as having this experience of intense abdominal pain after eating something, or having to go to the bathroom 15 times, or they try to equate it to having had the flu, and it’s not even close. The other thing that I’ve noticed in the community, actually with people with ulcerative colitis and Crohn’s, is a lot of people claim this identity of being disabled, and to me, I feel like that’s disempowering. I know that it’s helpful to have resources for disability with a chronic condition like this, but I don’t see myself as disabled, and I don’t claim that as part of my identity. I don’t think having colitis is a disability, even though there are some things that are challenging to do before I had the disease. I feel really empowered actually to know my body better and to have a better expansive understanding of compassion, and life and death, and my body. Yeah, I don’t like the term disabled, and yeah.

People assume, because I don’t eat that much, because my stomach hurts, and they always see me running to the bathroom. “Oh, you must be so…” Because they don’t see me first, so you must be so thin. Or if they do see me, they’re like, “Wow.” You see they’re confused, and some people will say, “Oh, I’m surprised you’re not thinner because I am heavy. I’m almost 200 pounds. I can’t lose weight. I will not eat for three days straight, and I’ll still gain two pounds. Nobody knows why. I got put on a diet by a doctor of 800 calories a day for a month, and I followed it completely, and I gained five pounds.” And I broke down crying because he told me I must’ve been lying. So, the weight stigma that comes with it because people expect me to be thin because I have it… It’s really frustrating. It’s really, really frustrating. And I know that my friends talk behind my back. [PII redacted] won’t go to that because she might not be able to get to a bathroom or [PII redacted] can’t do this. So, that’s very frustrating. I wish people wouldn’t talk about what I can and can’t do without consulting me. I wouldn’t talk about my weight behind my back because that’s not okay ever. Doesn’t matter if the person is sick or not. You should never be talking about somebody’s weight.

I think my biggest frustration is when people talk about my disease they talk about it being treated with diet like there’s a single diet remedy that can fix my issue. And that’s really upsetting because there’s not really a specific diet and to tell somebody that they have to restrict themselves so much more than other people, they’re not really putting themselves in that person’s shoes. So I wish people wouldn’t talk about, “Oh, if you eliminate all sugar from your diet, you’ll be healed.” Or, “If you eliminate all gluten from your diet, you’ll be healed.” I wish people would just be more accepting, and to be honest, a lot of people have no idea what ulcerative colitis is. I mean, I’ve talked to numerous people. I think people are more familiar with Crohn’s disease than ulcerative colitis, which makes it a little easier to have something that’s kinda similar, in a sense, but not totally. So yeah, I think it’s the diet portion that really just bothers me so much is that people think that there’s some way that I can heal myself with a diet, which, if that was possible, I think providers would be more in tune to that.

It makes me cringe when I tell people I have Ulcerative Colitis and they say, “Oh yeah, I had that once. But it’s gone now,” or something like that. Because there is the general Colitis, which is just an inflammation in the intestines, but just very different than Ulcerative Colitis, which is a lifelong autoimmune condition that you don’t just get once and it gets better and goes away. So, that makes me cringe. I also don’t like it when people say, “Just try eating this,” or, “Just try doing this.” Or, “I knew someone that did this and they got better.” It’s such an individualized disease, and what works for one person doesn’t necessarily work for the other. And it’s frustrating, especially when, as a patient, people often spend so much time researching and trying to find ways to feel better. And people just kind of dismiss it as something like that. Or they say, “I have IBS.” I also have IBS in addition to Ulcerative Colitis, and while it’s no fun to deal with, it’s also not the same thing. So when people say they know what it’s like because they have IBS, that’s frustrating as well. Because again, IBS is not an autoimmune condition that can damage your colon or lead to surgery. Or there’s no real internal damage with that like there is with Ulcerative Colitis or IBD.

Biggest thing I hate is when people say, “You don’t look sick.” Of course, I don’t look sick. It’s one of those invisible illnesses. It’s on the inside. It’s not on the outside. That’s probably the most cringe-worthy sentence I’ve ever heard telling somebody that they don’t look sick or they don’t look like they’re hurting or something like that. I just wish they would stop saying that. They have no clue what it’s like to live with this condition, unless they have it.

The thing that makes me cringe the most is when people say that diet has caused this disease. From chicken nuggets, to corn, to ketchup, these ignorant comments have frustrated me. And I wish people wouldn’t comment on different treatment options when they haven’t even taken the time to ask how I’m feeling or know details about my journey. It really frustrates me when people comment on my weight. That I looked better when I gained weight because I was too skinny before. It also frustrates me when people say “Well at least you don’t have to go to school,” when my guts are bleeding. And I wish people would not make certain comments about my treatment options or my diet.