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Living with a Chronic Illness as a Young Adult

Megan Titterington
Woman lying on a bed, in distress.

Content warning: weight loss, surgery, vomiting.

Megan Titterington

Living with a chronic illness often feels like Russian roulette, except the measures I take to avoid an attack end up with me losing anyway.

Every day, when making plans, my top priority is to check whether I will have access to a toilet. I find long journeys nerve-wracking, in case I need the loo miles away from anywhere we can stop.

I was diagnosed with gallstones when I was just 18. It took five months for doctors to diagnose me. Five months of being in pain every time I ate. Five months of missing school because I would be up all night in pain.

A gallstone is when a small stone, usually made up of cholesterol, becomes trapped in your gallbladder. It can trigger intense and sudden pain for hours on end. I couldn’t sleep, I was emotionally and physically exhausted, and my eating habits worsened. To avoid triggering my gallstones, I restricted my diet further. I actually went from a size 16 to a size 8 within six months.

“To say the whole experience was a whirlwind would be an understatement.”

You are more likely to develop gallstones if you are overweight, over 40, or a woman. Most of these tick boxes didn’t apply to me, so it took a while to reach a definite diagnosis. It was incredibly frustrating. I had to keep booking appointments with the doctor after each test came back clear.

A life-changing surgery

A month or so after my diagnosis, in the middle of my A-Level exams, I was hospitalised due to a nasty bout of pancreatitis. It inflamed my gallbladder, causing me to vomit bile if I took a sip of water.

Within hours, I was told I needed emergency surgery to remove my gallbladder. I would be in hospital for days and miss two A-level exams. My only options were to take my last exam at home or redo the whole year.

To say the whole experience was a whirlwind would be an understatement. I didn’t understand how much this would affect me emotionally, until a few weeks later when the shock of the experience wore off. All I could do was cry with worry, scared I wouldn’t get into my first choice university because of the predicted grades I had received on the missed exams.

https://twitter.com/Ktjaym/status/1699624508079137255

Five years later

I still struggle with stomach issues. But, until this year, I would not have considered myself to be living with a chronic illness. I presumed that it was normal to experience stomach problems following the removal of my gallbladder, and considered them a “side effect” rather than an “illness” of their own.

Today, at 23, I am in my first ‘real’ job, post-university. When I started my job and filled out the health form, I did not mention my stomach issues. I didn’t think it was important. It feels like every man and his dog suffers from ‘stomach issues’ nowadays, so my problem wasn’t exactly unique. If nothing was ‘officially’ wrong,  my illness doesn’t even have a label, why would it be worth mentioning?

“I think it’s common to downplay illness in the UK.”

As I write this now, I am in hospital for the second scan in my bile study, following a colonoscopy earlier this month. I am a few weeks away from a suspected diagnosis of bile acid malabsorption — a gastrointestinal disease often caused by gallbladder removal surgery.

With hindsight, I feel silly that I didn’t think my health issues were worth mentioning. I am incredibly grateful hybrid working is in place — without it, I would be missing work every two weeks. 

‘Keep calm and carry on’

Recently, the Office for National Statistics (ONS) published a record-breaking statistic: more than two and a half million people are not working due to health problems. Roughly, for every 13 people working, one person is sick long-term.

It’s common to downplay illness in the UK. It’s part of the ‘keep calm and carry on’ nature cemented in British culture. Before the pandemic, I forced myself to go to school or lectures if I had a cold. But now, it is more customary to stay at home when you are unwell. This might be one positive to come out of the pandemic.

For a long time, I’ve found it hard to express how much my stomach issues have affected me. It’s not easy to admit you have extreme bowel problems. I worry I will disgust people and, even when speaking to doctors, I always apologise for ‘oversharing’, although they reassure me that they have heard worse. But, whether it is physical or mental illnesses, you shouldn’t have to downplay what you feel or are going through. 

Since my surgery, five years ago, I have suffered from indigestion and acid reflux, yo-yo-ing from medication to medication. At one point, I was taking eight tablets a day, two after every meal and two before bed, so I could eat without reacting to anything. It feels weird to have ‘side-effects’ from eating which need to be managed when most people don’t think twice about what they consume.

Working with a chronic illness

This year, I’ve been dealing with a new problem. To put it politely, since Christmas, I have been struggling with sudden and frequent bowel movements. It leaves me dehydrated, anxious, and weak because my body is unable to hold onto anything of substance. 

At first, it happened every few days, but as I have learnt what triggers my stomach, it has gone down to maybe once every week or two. Sadly, dairy is a big one, which means no more cheese for me!

“I felt I was missing out on a key opportunity to make friends in a new area.”

However, there was a time when I needed to call into work and tell them I couldn’t come in because I needed close access to a toilet. That is a difficult conversation to have, especially a couple of months into your new job. I felt guilty that I couldn’t go to work and was anxious they would judge my ability to do the job.

My dream job is to become a broadcast journalist and TV presenter. But I worry that unless I find a suitable medication which allows me to manage my symptoms, I will be live on television one day and run off-stage to go to the toilet. The only alternative is to avoid eating before work, to prevent that potential situation from happening. At the moment, I don’t eat anything until I am actually in my workplace, out of fear that something will happen during my commute.

The effect on my life

On top of this, I am incredibly sporty. At university, I rowed six times a week. 

I moved to Oxfordshire and joined a new rowing club, with the hopes of making new friends, but I found myself unable to train. There were two major reasons: I was nervous about having a bad stomach the day of training or being stuck in a boat with no access to a toilet for three hours. As a result, I felt I was missing out on a key opportunity to make friends.

Even now, I am anxious about returning: everyone else trained together since the start of the season and already formed close friendships.

Still, I find it really difficult to comprehend how this illness has affected my training. I was the sporty girl at university. I loved challenging myself. Before my most recent bout of extreme bowel movements, I had been able to carry on normally as an athlete. In lockdown, I ran a half marathon and I took part in a 48-hour triathlon when I was 19. It feels like I have lost a part of my personality, a part of my being.

Living with a chronic illness

When you’re unwell, you need to be understanding and sympathetic to what you are going through. You should treat yourself the same way you would a friend, sibling, or child, by providing love and support. As cheesy as this sounds, you have to be kind to yourself. I am writing down this sympathetic message, for myself as much as anyone else who is going through this. I still need to learn how to be kind to myself.

Living with a chronic illness is tough, physically and mentally. But what is most important is making sure you don’t downplay what you are going through, especially an illness that can affect the rest of your life.

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Featured image courtesy of Yuris Alhumaydy on Unsplash. Image license found here. No changes were made to this image.

Aspiring broadcast journalist studying with News Associates from November.

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