Young, wild and free … Whilst being chronically ill

As if being in your twenties wasn’t enough to worry about … Young women entering adulthood explain how their lifelong illness won’t stop them achieving their goals.

Packing your bags and leaving home for the first time to make the big move to university. Buying pots and pans. Planning how you will decorate a room you’ve never seen. Saying goodbyes to family and friends. An era filled with anticipation, apprehension, and enthusiasm.

Equally, the questions going around your head when starting your first ‘serious’ job.  Is this the career for me? What will the people be like? Are my clothes smart enough? All these add to the immense nerves, but huge excitement that comes with fresh starts in your twenties.

But what about those with chronic illnesses? After all, almost one third of adults globally have a chronic illness.

Izabelle Parnham is a 20-year-old law student from Bradford, studying at the University of Liverpool. She has also been living with epilepsy since she was 11, after having her first seizure on the school bus.

“I finished school and it was just the usual routine. I finished my science class and got on the bus as normal”, Izzy recalled. “I felt perfectly fine, just going about my day. I opened my crisps and had this unusual dizzy feeling that I’d never experienced.

“I was surrounded by loud, older school kids who seemed scary as I was only in year 7. All I know is I dropped, there and then, on the bus and had my first seizure, and the bus driver carried me out and laid me on the floor.”

Izzy had never shown any previous signs of having epilepsy, and understandably, this experience was a huge shock to the system for an 11 year old.

“When I came around, I had no recollection of anything. I just remember being very frightened”, she says. “Imagine waking up on your headteacher’s floor with three teachers standing above you.  They explained what happened, but I only remember crying for my mum.”

Izzy was then diagnosed with epilepsy, and takes various tablets daily, to reduce the number of seizures she has. Following her first seizure, they would recur on a monthly basis, with her main triggers linked to stress and alcohol, which changed her life drastically.

“I’d panic in unfamiliar settings”, admits Izzy. “I’d constantly be thinking ‘if I had a seizure here, who would help? ‘Who looks like they know about the recovery position?’ ‘Would people just walk past me?’ These things would go round in my head at the shop, gym or just walking down the street. Instead of enjoying myself, I’d be overthinking massively about my safety.”

Despite Izzy’s condition, she recently spent six weeks travelling Southeast Asia, and leads hip-hop and contemporary dance classes twice a week, alongside her law degree.

“I had the most amazing time over summer in Asia with my friends”, Izzy said. “I really put all my concerns regarding epilepsy to the back of my mind and it was just not something I thought about. I was on top of my medication, even on the other side of the world, and I feel proud and wish I could tell 11 year old me, who was so anxious after that first seizure, that life is going to be amazing.”

Izzy also attributes her confidence growth to moving to university, and despite the huge anxiety she had about being far from home – it was the most positive decision she could have made.

“For anyone struggling, I think gaining your own independence, and pushing yourself out of your comfort zone really helps. I would always turn to my mum, but you learn to deal with things directly without relying on others”, she explained.  As scary as that sounds, it’s more doable than you think.”

“I’m in my third year now – I’ve found my people and grown in confidence. I go on nights out every week with my dance friends – many of which I don’t remember. But I’m having the best time! A few years ago, I would have never envisioned myself going to the other side of the world, and I can’t wait to go again!

“Realistically I will live with this forever, but I’m more comfortable with this thought now – I’ve realised I just need to live my life.”

She explained that any occasional worries she experiences, the NHS website, or are useful in subsiding her anxieties – both are easily accessible for anyone with stresses regarding epilepsy.

‘Young Epilepsy’ estimate that approximately 103,600 people aged 0-24 in the UK have epilepsy, proving how prominent it is, and how thousands of young people may feel the anxieties Izzy once dealt with.

High statistics like this are similar in other chronic illnesses. ‘Coeliac UK’ estimates that around 1 in 100 people in the UK have coeliac – a condition where the immune system attacks the body after contact with gluten.

Lucy Morrison, 21, from Essex, is one of those 100. After countless doctor appointments and her parents being repeatedly ignored, Lucy was diagnosed with coeliac, aged only two. The impact gluten has on people like Lucy are extremely unpleasant.

“Living with coeliac is much more than ‘just an allergy’. Eating gluten increases risk of cancer or infertility, so I must be extremely careful”, Lucy explained. “I also constantly feel awkward, especially going to other people’s houses, as I feel like I’m being difficult asking for different food. I have quite severe anxiety surrounding gluten – I miss out on events as I get so anxious, it makes me physically ill, which feels isolating.”

Despite the prevalence of coeliac, Lucy has had multiple encounters where her dietary requirements were ignored and put her at significant risk.

“I’ve had really scary experiences where I’ve been told a dish is gluten free when it wasn’t. It feels like restaurants claim to be gluten free, so it appears they’re catering for everyone, when they’re not”, Lucy explained. 

“In the short term, the repercussions of eating gluten for me are vomiting for hours, extreme fatigue and being bed bound for days, due to lack of energy and pain. I think more awareness on how serious the disease is would reduce my anxieties and show that I’m not just being picky.”

Despite her condition, Lucy balances a social science degree, while being a devoted member of her university’s cheerleading team for nearly three years, including countless nights out and holidays with her team mates.

“I try not to let the effects of my illness impact my university experience. Obviously, it can be hard, but I surround myself with non-judgemental people, and being part of cheer has really helped me. Next year I’ve stepped up to be a coach of one of the squads, which I’m really excited about.

“I’ve been to Croatia twice with my cheer team, which was the best time, and being around fun people does relieve my anxieties. I also hope to go inter-railing the summer after I graduate, which obviously involves eating at a wide range of places, and I’m determined to not let coeliac affect it.”

Living with chronic illnesses can feel isolating, particularly in your twenties, as there is frankly, already more than enough to worry about. It’s difficult knowing which resources are there, or where to turn in your hour of need.

Amber Horne, 24, a band five staff nurse, currently based at the Royal Victoria Infirmary in Newcastle, has experience working with various chronic illnesses. She provided us with resources, that people struggling with their chronic illness can turn to.

“It may sound silly, but I direct people struggling to platforms like TikTok. I appreciate it isn’t curative, but there are content creators that share the reality of living with chronic illnesses, which may help others feel less alone in their battle”, Amber explained. “For example, Molly Bryant has Type one diabetes. If I remember correctly, she goes on holidays, dates, out with friends and lives a wholly normal life. 

“There are other content creators for coeliac and epilepsy sufferers alike, as well as many more, who reduce the stigma that many young adults face. Otherwise, I encourage people to see their GP’s, or GP nurse practitioner. Most GP clinics have specialists in chronic illnesses. Their levels of support ranges from a general health check-up, ensuring you have enough equipment, but most of all, a good chat. 

“Chronic illness isn’t just a battle physically, but also mentally. I’ve met some wonderful practitioners in my time who are so knowledgeable and have a plethora of resources and support groups for those with chronic illnesses.”

Being in your twenties is a weird and wonderful time, filled with excitement, big plans, but also various worries, big or small. Chronic illnesses can add more worries, due to additional things you must be wary of, whilst navigating the minefield of being a young adult and unsure of what your future holds.

However, there are many outlets and resources available, and crucially, due to the statistics which show how many people have chronic illnesses globally, you are without a doubt not alone in your battle, despite how lonely it sometimes may feel.

For more information about navigating your twenties with difficult circumstances, click here.

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