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Having Crohn’s Disease in a Small Village That Didn’t Know It Existed

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I was 15 when I was diagnosed with Crohn’s disease, an incurable lifelong disorder largely affecting the gastrointestinal tract. Side effects include blepharitis, psoriasis, stomatitis and inflammation of the liver, stomach and eyes, just to name but a few.

Considering the malady was only discovered 85 years ago, it’s no surprise that many medical professionals still don’t have the faintest idea how to even begin treating it, yet alone understand how it works. If even some of my doctors don’t understand my disease, how could my family, friends or neighbors?

Having grown up in a small village in the South of Wales, I spent my childhood as part of a relatively tight community. No shopping trip lacked seeing at least a few distant relatives and everyone in my family would leave their doors unlocked so we could walk in whenever we fancied. No one really had anything “wrong with them,” let alone any chronic illnesses.

In regard to my Crohn’s, I have it pretty lucky. All I need is a high dose of medication to stop my system from collapsing in on itself. In the grand scheme of things, the severity of my disease is manageable.

It did take over a year to get diagnosed and that was only after endless hospital visits and a fast, steady deterioration of my health. I was sent away numerous times with professional comments such as, “The agonizing pain is just caused by stress,” or “The blood, weight and hair loss is just something that affects people every now and then.” It was frustrating, to say the least.

By the time I was finally scheduled for tests, my skin was scarred from psoriasis and my system was frail from constantly trying to regenerate itself.

While I am deeply grateful to the National Health Service (NHS) for, in essence, saving my life, it is still disappointing that it takes so long for medical professionals to consider a patient may have inflammatory bowel disease (IBD). In 2017, a large number of people in Wales had to wait over a year for surgery and it seems the number is only increasing. It’s disheartening when the people who should know the most about your health are unable to prioritize it, or at the very least understand it.

When I was medicated and my body could start healing, I was able to go back to school. However, upon my return, I found that even my friends didn’t realize the significance of my illness. I received comments such as “you’re just using it as an excuse to skip class,” and “it’s not that bad, I have IBS.” Coming from people who cared about me, it made the subject quite a difficult one. The question is, how do you change people’s views? Jury’s still out.

When I tell people I have Crohn’s disease, I’m often met with a “what’s that?” When I explain my tricky diet and agitated digestive system, it’s still hard for them to grasp the severity of it. My own grandmother would know my inability to digest any form of dairy, and yet would always knock out a pizza when I visited. She had grown up in a “you eat what you’re given because it’s all we can afford” part of old South Wales, but it’s a hard motto to reinforce when the literal collapse of my organs is at stake. People tend to forget it exists when it’s not something you can see – but believe me, if you could understand how my stomach differs from the normal, I’m sure it would warrant an entirely different reaction.

After a recent flare, I revisited my GP. Having educated more people over the years about Crohn’s and been assigned my very own IBD nurse, I was optimistic for them to understand exactly what course of action to take next. My medical records still hadn’t been transferred from Mid-Wales — sent six months earlier — and when I met with the GP I was met with the sentence: “It’s just tricky for us; you’re our first patient with actual Crohn’s.” If it’s even difficult to talk to doctors, you can imagine what it’s like to try and explain to people who don’t know anything about it.

By the time university came along, I was relieved to leave the house my family and I had lived in. My neighbors were deeply unsupportive of my diagnosis, even going as far as writing letters complaining about the sheer amount of my hair loss blocking their drains. When I left for university, my family moved to be closer to the city, where I found myself telling everyone who had ears about Crohn’s. People were willing to listen, and would come back asking questions — in turn, meaning I would have to learn more about myself. I met other people living with IBD, which brought on a strange sense of freedom and connection. Slowly, the people around me were learning about the incurable, lifelong disease, one by one.

Back home during the holidays, my neighbors would hear more and more anecdotes about Crohn’s. The more they would learn, the more they would understand. My local GP saw me several times a week, meaning that our knowledge of the disease grew together. The good news is that as more people are being diagnosed with illnesses such as mine, more funding is being put in place to help others living with the disease. The bad news is — well, more people are being diagnosed with a disease that seemingly has no known cause and no known cure. According to medical statistics, 74% of Americans have GI complaints, but only a very small number of those are ever properly investigated.

Slowly, people have been learning more about exactly what it means to have a diagnosis of an illness that could kill me. My neighbors ask how I am, my university friends order the rice without bacon because they know I can’t digest it, and my grandmother has started stocking green tea and avoiding serving pizza. It takes a long time, but by starting from the inside circle out, the people around me have slowly been understanding more. The village, person by person, is finding itself telling stories and spreading the news, and it’s only rarely that I get rushed comments from the other side of a bathroom stall.

Crohn’s is still considered a relatively modern disease, meaning that there is still much unknown about it. Another family member has only just been diagnosed with ulcerative colitis six years after symptoms started showing and he first visited a doctor. Issues regarding lesser-known maladies within the umbrella of IBD need to be brought to light and spoken about if there is ever to be a solution.

My 3-year-old niece has had severe stomach problems since birth, but when the GP denied any possibility of gut problems being present at such a young age, my mother was able to pull out a file of information she had researched herself. Half an hour later, a plan for investigation was set up, and she was soon diagnosed with Hirschsprung’s disease. Slowly, it seems everyone in my small town is starting to change their mindset on IBD — even, thankfully, the medical professionals.

Photo by Timur Romanov on Unsplash

Originally published: May 6, 2020
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