By Jess Commons, Refinery29
Diarrhea, bloating, constipation — gastrointestinal issues are never nice. Luckily for most of us, these problems are an every-now-and-again thing: an annoyance to be grumbled about, medicated, and forgotten.
[post_ads]But what if your condition were chronic? What if your bowel troubles were so bad that they affected the rest of your wellbeing, happened on a regular basis, and posed serious health risks for the future?
Meet Sophie, 24, from London. She suffers from Crohn's disease, which is one of the two main forms of inflammatory bowel disease, or IBD (the other is called colitis). Sophie tells us that the best way she's heard a doctor describe it is like having "eczema of the inside." Yeah. Sounds rough, right?
Essentially, having Crohn's disease means that your digestive system will become inflamed — sometimes all the way from the mouth to the anus. When Sophie's Crohn's flares up, she is left with mouth ulcers, fatigue, an upset stomach, and abdominal pain. She may lose weight (IBD prevents her from being able to absorb the nutrients from food), and she can develop fistulas or abscesses, which is where the digestive system creates an abnormal tract between different sections of the bowel or the bowel and skin. Crohn's can also lead to problems with the joints, eyes, and skin. "It really is more than just an upset stomach!" Sophie says.
IBD is relatively rare. It's estimated that 780,000 Americans have Crohn's, and about 907,000 have ulcerative colitis, but IBD is on the rise worldwide. But because IBD still isn't terribly common, there are plenty of misconceptions about it that need clearing up. Like the fact that it's not irritable bowel syndrome (IBS) — something experienced by around 14% of the U.S. population.
Ahead, Sophie, who is also a member of Crohn’s & Colitis UK, shares some of the things that, while she understands, she kinda wishes people would just stop saying.
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"You don't look ill."
"This is my key [pet peeve] when it comes to living with IBD. Because I look fit and healthy and, luckily, am able on the whole to live my life how I want to live it, people presume I can’t possibly be ill!
"My illness is invisible, but just because it comes across as if I’m coping with the condition, it doesn’t mean I always am. To look at me, I am [like] any other ‘normal’ 24-year-old, and act like one too, but if you looked inside of me, that would be a different story. Speaking to me today, there would be no sign that I’ve had two surgeries this year and spent time in hospital."
"Don't worry about the future."
"I appreciate that this comment is meant to be supportive and uplifting, but a huge chunk of having a chronic illness is related to coping with things mentally and coming to terms with the journey ahead.
"Upon diagnosis and during flare-ups it’s very difficult not to worry about things such as relationships (I once had a guy I dated call my condition an ‘extinguisher’ and that he didn’t want to continue seeing me), the possibility of having a stoma, and the long-term side-effects of the medication I am on, among other things."
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"Have you tried cutting out gluten?"
"It’s a common misconception that IBD is caused by a poor diet and poor food choices. Although certain foods might exacerbate symptoms, leading to a flare-up, a poor diet does not lead to or trigger the disease. Also, IBD is certainly not the same as being gluten-intolerant and should not be confused with Celiac disease.
"The condition is very variable depending on the individual. Personally, I am sensitive to wheat, fried food, and spicy food but other people’s symptoms may worsen if they consume caffeine, dairy, and specific vegetables, for example. It’s important to remember that the disease is very personalized."
"I have IBS, so I know what you're going through."
"I do sympathize with people who have IBS, because our shared symptoms (upset stomach, frequent trips to the [bathroom]) can be really debilitating and mean that we need to plan our days more than other people.
"I prefer to sit by the toilet when traveling, for example, and sometimes dread long meetings in case I need to excuse myself to go to the toilet. However, the two conditions are very different and particularly for some people, who spend extensive periods in [the] hospital and struggle to get out of bed, comparing IBD to IBS can come across as trivializing the condition."
"So, does it basically mean you always need to use the bathroom?"
"It’s so important to remove the stereotypes and stigma associated with IBD. People automatically assume that having IBD means you are stuck to the toilet 24 hours a day.
"Yes, increased urgency and frequency to go is often a symptom for many people with IBD, but those living with the condition can experience other symptoms such as extreme pain and fatigue, which can be exhausting on a day-to-day basis.
"This can mean periods where I am not able to work due to symptoms or regular hospital appointments. The lack of understanding can also lead to feeling isolated, embarrassment, and loneliness."
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"I would never go to the bathroom at a public place or at my boyfriend's house."
"One of the most debilitating elements of IBD is the sudden and unexpected need to use the toilet — and this can happen anywhere: at work, on the train, on a first date. The condition doesn’t care about your plans!
"There is still such a stigma about going for a poo in a public place, with some friends telling me they would never dream of going at their boyfriend’s house, but unfortunately for many people with IBD, they don’t have a choice in the matter."
"You don't look like a typical Crohn's sufferer."
"I had this said to me by the health practitioner who came to my house to help me administer one of the drugs I was put on shortly after diagnosis. Although she might have had good intentions, implying I looked healthy and well, this comment played right into the stereotype that to have IBD you must be really skinny. In turn, her observation made me think she was calling me overweight!
"People with IBD come in all different shapes and sizes, and although weight loss can be a key symptom for many, it’s important to note, yet again, that each person with IBD has different experiences. I know some members of Crohn’s and Colitis UK who have received the reverse but equally as offensive comment of, ‘I wish I had Crohn’s so I could lose weight like you.’
