“You look so poorly, you poor thing,” friends and relatives would say as a concerned look spread across their faces. I was 19 and had just been diagnosed with ulcerative colitis, a form of inflammatory bowel disease. I’d been underweight for years and the disease became so severe that it perforated my bowel. Because my bowel had been so heavily diseased, it did not absorb nutrients and therefore I couldn’t gain weight.
The removal of my large intestine meant I could start absorbing nutrients again. But it took a lot to get there – including the formation of a stoma bag, which, although emotionally, mentally and physically difficult to understand at first, saved my life. I had a reversal surgery to connect my small intestine to my rectum 10 months later, which was supposed to make me go to the toilet ‘normally’ again. But the way I live now is anything but normal.
I’m practically housebound. I have chronic diarrhoea which means needing to use the toilet so much that I have social anxiety and hate being out in places I don’t know because I am constantly worrying about needing the toilet and there not being one nearby.
My condition has a significant impact on my mental health – and my diet. My body does not agree with fruit and vegetables. I can be on the toilet for hours in pain. Because of this, I have to eat stodgy foods and I’ve gained a lot of weight as a result. Being on and off steroids has also contributed to the fact that I’m now plus-size (which I am fine with FYI). What I’m not fine with is the difference in how I am treated when it comes to my health, compared to when I was underweight.
When I was underweight, I remember people encouraging me to eat large meals. Telling me that my weight didn’t ‘suit’ me. Telling me that I needed to gain weight because I no longer looked like myself. I received endless sympathy and concern for my bowel disease. When I went to the doctor’s for help, I was taken seriously. Tests and procedures were booked within weeks of consultations. Now that I’m fat, it’s a different story.
I’m 25 and I’ve been struggling severely with recurrent symptoms – chronic, excessive diarrhoea, stomach pain and rectal bleeding – for two years. During this time, despite begging for help, I’ve had no tests or procedures to check for signs of inflammation. GPs have chucked enemas at me. I’ve ended up in A&E where nurses tell me that my symptoms really need investigating but then there has been nothing beyond picking up my prescription at a pharmacy, because nurses are unable to refer you to specialists – especially when you have already been assigned one.
Inflammatory bowel disease is a condition that needs specialist care. While I’ve had consultations since gaining weight, I can’t shake the feeling that I’m not taken anywhere near as seriously as I was when I was thin. As soon as I walk into the doctor’s office I’m met with comments such as “You look well nourished”. I immediately feel that they’re thinking, Wow, you’ve got fat. There’s no way there’s anything drastically medically wrong with you.
Inflammatory bowel disease is heavily associated with excessive weight loss, due to the inflammation of the bowel. When you’re not excessively thin, nobody seems to be concerned. And it feels like there is no sympathy or understanding, either.
Beyond the doctor’s office, my weight is remarked upon a lot. When I mention my symptoms, I’m told by people in my life to stop eating so much or to take some Imodium or that it’s clearly nowhere near as bad as when I was thin.
If I’m honest, being a plus-size person with inflammatory bowel disease has made me feel like a fraud. My weight doesn’t change the fact that I live with inflammatory bowel disease. It doesn’t stop me feeling trapped by an illness that nobody will take seriously. Yet it influences the way other people treat me.
Weight bias is real. Multiple studies show that in our society there is a stigma surrounding weight gain. We take people who are considered overweight less seriously and see them as less competent. There is an implied value judgement which wrongly assumes that people who are thinner are doing everything right.
These attitudes make me feel like I’m not sick ‘enough’. Sometimes I feel angry at my body for not showing the people who don’t believe me what they need to see. I look at other people with the disease and see how even after years, they’ve not gained a pound, and convince myself that I have nothing to complain about. And then I see the dark red blood in the toilet bowl.
A couple of months ago, after years of pleading emails and phone calls, of trips to the GP and to A&E, of demanding referrals to my consultant for specialist care, I finally started to receive some help. Six years after I was first diagnosed and operated on.
I remember feeling anxious at my appointment, fearing that they were looking at my body instead of hearing how much I was struggling. On the day I underwent a flexible sigmoidoscopy, I panicked, worried that nothing would show up on the camera or the biopsies. That’s the extent to which I’ve developed imposter syndrome about my own condition.
I knew there was something wrong with me and I needed the test results to back that up. Otherwise I had nothing. It feels perverse to say ‘luckily’ but, luckily, it turned out I was right to beg and plead and cry – because it was found that I have active inflammation in my rectum. I’m also going to be tested for bile acid malabsorption, which is a condition where your intestines can’t absorb bile acid properly, resulting in extra bile acid in your intestines, which can cause watery diarrhoea.
Suddenly, procedures are moving very fast, from blood tests to cameras to medical studies. It makes me wonder: Why now? Why wasn’t I listened to sooner?
I can’t help but wonder whether, had I been unhealthily thin, I would have been taken seriously sooner. I wish ulcerative colitis wasn’t so heavily related to weight loss. I wish its other symptoms were taken more seriously. I wish people understood that weight gain can actually, as this study shows, be an indicator of bowel disease. The misconception that all people with inflammatory bowel disease are thin needs to disappear. All it does is stigmatise plus-size people’s suffering.
Credit: Original article published here.