We recently reached out to student photographer Bethan Long to invite her to partake in Take 5, as we’d seen she’d created a photographic project to highlight the life of a Crohn’s disease patient. What made it more special was that her muse was her younger brother and Crohn’s warrior Nathan. This young man has a great attitude to his condition, a great inspiration.
My younger brother was diagnosed with Crohn’s disease at the age of seven years old. The same as many other people, I was clueless about Crohn’s disease despite being in a household with a sufferer. It took me a quite a few years to be able to understand the illness and how it really made my brother feel, physically and mentally. When choosing a subject for my final major project at college, I wanted to pick a topic that I was faced with every day, and Crohn’s was a perfect example. Not only did I improve my photography and create a heartfelt and educational photo-documentary I was proud of, I also begun to understand the illness even more so, and I wanted to spread awareness so that other sufferers of Crohn’s are able to relate to a piece of art as well as educate others on the illness as it is not given much attention.
Crohn’s is an illness that does not have a cure, and sufferers have to be constantly medically examined in order for the doctors to attempt to understand their symptoms and try and successfully prescribe treatment. Nathan is very mature about dealing with doctors and hospitals, but it is a downside of having Crohn’s disease.
This image shows my brother Nathan looking ill and vulnerable, pain can be seen in his eyes and his body is seen to be weak and frail. Despite being an invisible illness, if you look and listen closely, it isn’t that invisible after all.
Medication has altered Nathan’s body over the years, leaving people shocked at how different he can look in such a short period of time. Steroid medication was what caused Nathan to gain a large amount of weight in a very short period of time, often losing the weight and then putting it back on. Although being self-conscious about his appearance, Nathan understood that he and many others have dealt with the same issues and stays hopeful of successful results.
Despite having supportive family and friends, caring doctors and nurses, the unknowing journey of Crohn’s disease is still a very lonely process. Sufferers of all ages struggle deeply with emotional and physical pain and can feel misunderstood and isolated. This is the reason I wanted to make this documentary, in order to add to the Crohn’s community in a hope that people can feel less lonely.
One of the main aspects of suffering with Crohn’s is the vast amount of medication that has to be taken on a daily basis to help relieve some symptoms. With endless symptoms, trial and error and frustration, there is a never ending cycle of medication prescribed constantly to Nathan. His day to day life revolves around medication which can often not make him feel any better.
In Nathan’s words…
“My name is Nathan Long and I have Crohn's disease. It is an inflammatory bowel disease that can affect any part of my gastrointestinal tract, from my mouth downward, and unfortunately it is incurable.
I was diagnosed on the 16th of November 2012 when I was 7 years old. When I get a flare up, and show symptoms such as abdominal pain and diarrhoea, amongst other things, it really takes a toll on my everyday life.
Before I got Crohn's I loved to play football and sports with my mates, but now that is not so easy for me, but it’s okay because I found a new love for gaming instead! I am on my Xbox One at home quite a lot, because Crohn's can get in the way of my education. Luckily, it doesn't affect my brain, but I often fall behind on class work which makes me feel frustrated. When I'm not at school or at home, chances are I'm at the hospital. I get admitted to Great Ormond Street Hospital for children a lot, when my Crohn's is bad or I need a check-up. The doctors check me over and over again and I often have operations, and other times they alter my medication. It's scary facing life with Crohn's at a young age, and despite friendly nurses and well...reasonable tasting food, I never ever want to stay. I just want to be at home gaming with my friends.
It's not all bad, as my family come and visit me at on the long days at the hospital, which means a lot to me, as they can't escape the reality of Crohn's disease either. Although I feel very singled out from the people around me, we pretty much look the same. That's why it's called an invisible illness. But sometimes my appearance, especially weight changes a lot, especially when I'm on steroid medication. I was very self-conscious and did not recognise myself.
Self-medication is a very big part of my life, it feels like all I ever do is take medication. Currently I take 6 different tablets daily, along with an at home injection every month and varied strict diets. It can feel never-ending, especially when they don't always make me feel better. Crohn's disease is a very difficult illness to deal with, if I could describe it in two words it would be ‘upsetting’ and ‘disgusting’.
I am only young and people tell me I often have a very positive outlook towards my new lifestyle, as challenging as it may be. If I'm on the toilet for a long time, I like to make flowers out of toilet tissue...it's not all doom and gloom. Crohn's disease does not make me any less of a person, and I hope you remember this when you come across somebody else with an invisible illness.”
To check out more of Bethan’s work head over here to view a social documentation of the places that get forgotten about.