As a student with diabetes, I’m tired of people not understanding the daily impact it has

I felt like I lived to serve my chronic illness, but this is how I’ve made peace

Today is World Diabetes Day. Just five years ago, this global day of diabetes awareness would’ve passed by with little relevance to me. I thought the onset of diabetes was only a result of diet. I didn’t understand the difference between the two main types of diabetes and I never thought I would develop diabetes. It’s not in my family, but out of the blue I was diagnosed with type one diabetes when I was 17. I had been feeling unwell for a while and lost weight; I would fall asleep on the college bus home and always felt thirsty. I had a fasting blood glucose test which came back elevated. Overnight my life changed.

Type 1 diabetes is a result of the body attacking the insulin-producing cells of the pancreas. Insulin is a hormone that regulates blood sugar levels and allows the body to use glucose, from the food we eat, for energy. Type one diabetics produce little to no insulin so we must inject it ourselves as we all need insulin to live.

There is no break from type one diabetes

Sometimes the burden of a chronic illness is easily masked. But when I’m really tired, hungover, or feeling emotional, the scale of the task at hand becomes apparent – I didn’t choose to do the job of a pancreas 365 days of the year. With diabetes comes low and high blood sugar daily, which can cause physical symptoms such as headaches, blurred vision, sweating, shakiness, irritability, fatigue, and feeling sick. Each blood sugar extreme requires action.

I felt like I was dying and I realised that this was how type one diabetics go

At the end of summer whilst on holiday, and for the first time ever, I was hospitalised with diabetes. My blood sugar had gone dangerously high after days of fever and I felt like I was dying. I was developing toxins called ketones that would put me in a coma. I rang my NHS diabetes nurse and he said I should ring my parents.

The constant pressure of managing type one made me burnout

Chronic illnesses unite people as much as they isolate people. They exist a lot of the time hidden from view, behind the frontier of a healthy looking person. My inner dialogue is often questioning a dosing decision or wondering if I have enough supplies on me if my blood sugar goes low. An apple juice carton has saved my life hundreds of times. The holiday event sent me into what is called diabetes burnout.

I simply became exhausted from managing diabetes. I felt like I lived to serve diabetes, constantly checking my blood sugar, fearful that if I didn’t, I would be hospitalised again. I lived in a world where 99 per cent of the people around me couldn’t relate to what I was experiencing. The trauma of what had happened kept me separated from connection. The student lifestyle makes diabetes so much harder to manage. Alcohol spikes blood sugar in a type one diabetic dangerously high and then can later cause blood sugar to drop dangerously low. I felt crazy and desperate. I didn’t feel like myself. Something had to change.

Accessing therapy made me realise I needed to give myself space from diabetes

For the first time, I accessed free therapy. I hadn’t spoken to anyone about diabetes, outside of friends and family, since my diagnosis. It felt cathartic. I realised that the hyper-management wasn’t useful. The glucose monitor that I was using enabled 24/7 data about what my blood sugar was doing and whilst this technology improves long term health outcomes, the constant management became overwhelming. I had to give myself space from the condition and realise that I was someone outside of diabetes.

The novelty of living with type one wore off

Unfortunately, our underfunded NHS means that diabetes psychologists are far and few between. A life threatening condition such as type one diabetes is as much a mental condition as it is physical. I had experienced dissociation, where life hadn’t felt real. The first few years of living with type one diabetes were okay. The novelty of checking blood sugar and injecting insulin was still there. But over 13,000 insulin injections later and hundreds of both low blood sugars and stubborn high blood sugars, and the novelty wears off.

I find inspiration in the stories of young children diagnosed with diabetes as a diagnosis can change a whole family. In clinic, I hear parents talking about the fatigue from checking on their child’s blood glucose throughout the night or the fear that their child will have a hypo (low blood sugar) at school. It is a very real condition to live with, with no days off. But of course there is hope – it is manageable. I haven’t let it stop me from doing anything, like travel. which I love. I’m getting back into running and would like to run a marathon one day.

Self-care and fostering wellbeing practices is vital when living with diabetes

Each type one faces challenges to live at peace with the condition. Yoga and meditation have hugely helped me – they are daily practices that bring me back into my body and into the present moment. I volunteer on the Berkshire Young People Diabetes Council (BYPDC). Meeting other type ones has really helped – community is vital. Therapy has helped me too.

Diabetes, like a lot of other chronic illnesses is largely misunderstood and misrepresented in the media. Type one diabetes is completely different to type two diabetes and the lack of awareness surrounding this condition makes it hard. Symptoms of undiagnosed type one diabetes include feeling very thirsty, tired and losing weight quickly without trying. I am tired of diabetes but I will advocate for awareness and mental health support because it matters.

Here in the UK I have the luxury of the NHS. At the moment, many Ukrainian type one diabetics are at risk of dying as a result of insulin, food and medical supplies shortages. You can donate here.

If you have been impacted by this story, you can find advice about type one diabetes from the NHS here, and specifically about living with it at university here.

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