It’s 7pm on a Sunday, and I’m crying in bed.
I’ve just come off the phone with my best friend, who had gone to a party I was also supposed to attend the night before. She was nattering intently, keen to share all the details I had missed – who hooked up with who, who threw up on the sofa, the usual. Then, abruptly, she came out with words that broke me; “Everyone was talking about you, Caz. They said you were lying about being sick so that you didn’t have to come.” I swallowed, my heart dropping into my stomach. These weren’t just random people at a house party – these were supposed to be my friends.
Though this was the first time I’d been exposed to their opinions so bluntly, it wasn’t the first time my friends were mystified by my condition. I am one of 146,000 in the UK living with ulcerative colitis, an autoimmune disease which affects the large intestine. Symptoms include abdominal pain, urgency to go to the bathroom and bleeding from the rectum, and it comes with a whole host of side effects including anaemia, osteopenia and migraines due to dehydration. It’s difficult to describe how severely this disease transforms your life, but its existence affects your entire body and your mind, not just your stomach.
I was diagnosed in 2008, a pivotal moment in my young life. I was 18, preparing for my venture into university, when I began feeling intense bouts of pain in my lower abdomen. As an arrogant youth I assumed it was early period pains and carried about my days, drinking with friends and eating cheese (which is a popular trigger for colitis) like it was my lifeline. When I started seeing blood in my stool for more than three days in a row, I knew something was wrong. The pain was so severe, I couldn’t move from the floor. I was admitted to hospital and have been under the incredible care of their gastroenterology team ever since.
“I don’t think my friends truly understood the severity of my condition; they always assumed I would ‘get better’. So did I.”
My friends came to visit me in strands. Hospitals are always scary places for young people and seeing me thin, gaunt and connected to rehydration tubes can’t have been easy for them. They attempted to lift my spirits by bringing me sketch pads, magazines and soft toys, and I received many well wishes from people in my class. Sadly, I don’t think they truly understood the severity of my condition; they always assumed I would ‘get better’. So did I.
Once I was out of hospital and taking more medication daily than a person three times my age, I began to feel more like myself. When university started, I was front and centre at every fresher’s party, launching myself at the dance floor and attempting to outdrink everyone I knew. And then, I got sick again. And again. I began cancelling on my friends, who couldn’t comprehend why I wasn’t able to come to dinner when I was seen on campus a mere two days prior, laughing with my classmates. I missed out on Halloween parties, birthdays, dinners. I almost didn’t make it to my grad ball.
I became a recluse, ignoring phone calls for fear of upsetting people with my constant cancellations. It took some time, but I finally came to the realisation that this condition wasn’t going anywhere, and the only way my friends were going to accept it was if I did too.
Living with an invisible illness is both a blessing and a curse. When I’m not flaring, I appear fine – I see my friends, drink booze, eat whatever I want and laugh hysterically at nothing in particular. However, the unpredictability of an autoimmune disease results in symptoms appearing almost out of nowhere. One day I could be at a party, the next I’m in bed clutching my stomach and begging my body not to fall apart.
This is one of the main reasons why my friends were so confused by my condition; they were simply unable to comprehend how my body could be so bipolar. Even I couldn’t understand it.
“One of the most important things a friend can do to support someone living with a chronic condition is be empathetic”
Last week, Japan’s prime minister Shinzo Abe resigned due to ongoing complications with his colitis. The longest serving premier had been suffering with the condition for years, but his symptoms had intensified significantly in the last few months which resulted in his eventual decision to step down and focus on his health. As a regular person, the condition is enough to devastate a person’s physical and mental wellbeing for the long term. Imagine trying to run an entire country.
I’m incredibly lucky that a few close friends have stuck by me throughout my colitis journey, and who fully understand when I can’t come out because I’m so exhausted my lungs hurt. They handle my complex dietary requirements admirably, recognise my mood swings when I’m on steroids, find me loos when I’m desperate to go, and bring me hot water bottles and tea when I’m collapsed on their sofas in pain. They acknowledge the fact that I may not always attend an event that I’ve accepted an invitation to, no matter how enthusiastic I was at the time – it’s hard when you’re so full of vigour but your body doesn’t align with your mind.
My biggest fear has always been losing people I love, so I would say ‘yes’ to every event, every social gathering, in fear of upsetting anyone or missing out on my youth. Gradually throughout the past ten years, I have taken some of the responsibility on myself and have learned to say ‘no’ more often, especially when I know that a flare is imminent or likely to occur. I’ve also become kinder to myself, and learned to accept feelings of pain and lethargy. Sometimes showing weakness is a strength in itself.
One of the most important things a friend can do to support someone living with a chronic condition is be empathetic. Appreciate that there will be times when they disappear for a few days, fold in on themselves and desire the need to just be alone. Accept that they may have felt great when they initially made plans, but then don’t have the physical capacity to follow through. It’s tough – they look flaky and unresponsive, and it may become frustrating – but they appreciate your tolerance and support more than you know. Chronic conditions are emotionally demanding, and a little compassion goes a long way. That, and a surprise chocolate delivery of course (dairy free, please).
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