Every student feels the pressure of assessments, deadlines and attending classes. But most don’t face the daily dilemma that I do living with sickle cell anaemia: do I settle for lower grades because the hard work needed to achieve the highest standards may result in me becoming sick?
After hundreds of hospital visits and a double hip replacement before the age of 21, I know as well as anyone that living with sickle cell anaemia is challenging. But if I were given the choice to cure it, I would have to decline.
The condition I live with is a genetic disorder of the red blood cells. It results in a suppressed immune system and an inability for blood to absorb essential nutrients. Life is a constant struggle; chronic pain never lets me forget the damage the illness does to my body.
I have to balance the time I spend studying and resting. Stress is a trigger for my illness, and can cause a lot of pain. I can’t help having hospital appointments scheduled during my timetable – and when it’s a choice between health or education, health always wins.
I’m fortunate to have maintained a good equilibrium so far, but problems do arise. For most students, cold lecture theatres are at worst a source of annoyance. But I have to plan exactly where to sit in order to avoid the air conditioning or the draft from a window. When I make requests to close windows, I often wonder if my peers think I’m moaning. What I fear they don’t understand is that a cold body temperature can end up with me being hospitalised yet again.
My mum, who is not affected by the disease, once asked me what the pain feels like.
The best way to express the hammering, throbbing, pulsating pain I feel when having a crisis is this: imagine there is somebody inside your bones with a pneumatic drill, constantly boring into you.
But the illness has its upsides for me as a student. Thanks to years of explaining my history to medical students and doctors, I have learned how to speak confidently and expressively. A few years ago, at a low point, my doctor got me to start talking to younger patients with the same illness. I became a sickle cell ambassador, speaking with adolescents about their illness, and encouraging them to focus on life beyond pain and hospital.
Promoting sickle cell awareness in the community has helped bring my confidence back. I’ve spoken in front of panels of professors, I’ve been the patient representative on the interviewing panel for clinical health psychologists, and I’ve given talks to other students about living with a long-term illness. It was daunting at the time, but I got through it and it’s made me a better contributor and public speaker – helpful skills when you’re studying.
While I never look forward to the next hospital admission or the next operation, taking away my sickle cell would take away part of me. Key points in my life have been in hospital. I had one hip replaced at 18 years old, and the other when I was 21. At that age, most people remember being young, careless and free – I remember celebrating my 19th birthday in a hospital bed as part of a six-month stay. I have fought my battle with the condition all my life, and will continue to do as long as my body will allow me.
When I think back on my journey, I sometimes wonder how I came through it all. On reflection, it’s a combination of determination and strength – which comes from my mum. She told me: “Sickle cell is something you are going to have to deal with always, so get on with it. You are still a person like everybody else, so do not ever use your illness as an excuse not to achieve in life.”
It’s a daily battle, but sickle cell anaemia dictates a huge part of how I live my life. It’s become part of who I am. For that reason, if offered a cure, my answer will always remain the same: “No, thank you.”
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