Tuesday, 3 December 2013

Coming out as Disabled - Experience of a student diagnosed with essential thrombocythaemia

Today is International Day of Disabled People and to mark this, NUS have launched “Coming Out as Disabled” a campaign in which they encourage people to write articles about their disabilities and experiences. RUSU has collected several blogs from Reading students who wanted to share their stories. We hope that starting these conversations on our campus will encourage all students to talk more openly about disability and most importantly remind disabled students that they are not alone.

Thank you so much to the students who wrote to us and supported this cause, we hope you found it to be a positive experience.

Sophie Davies, RUSU Welfare Officer and Ellie Brady, RUSU Disabled Students Part-time Officer.

I was diagnosed with a rare bone marrow cancer, “Essential Thrombocythaemia”, one week before my first term of university. With my new diagnosis and being thrown into a completely new environment simultaneously, university had the potential to be very scary!

I was terrified of explaining my diagnosis to my new flatmates; worried that I’d be known as “the sick girl” and nothing more, with cancer becoming my identity. I tried to hide my symptoms as much as possible and didn’t begin treatment until December that year so side effects were thankfully minimal. 

Then one day the cat got out of the bag… My cancer causes blood clots which can cause temporary blindness if a clot is passing behind my eye. I was getting ready for another night out in town with my flatmates when BAM, I went blind in my left eye, I then was faced with the very daunting task of explaining my “situation” to my new friends.I couldn't bring myself to explain my condition all at once, so merely said I had a blood condition which sometimes, on the odd occasion, caused blindness. They respected my wish; that I didn’t want to talk about it, and we stayed in that night instead, chatting to the early hours of the morning.

In December when I was told by my consultant I would have to start daily chemotherapy pills that would make me very sick, I realised I had to talk to my flat properly. My parents dropped me back at halls from the hospital and I said goodbye with tears in my eyes as I dreaded what my flat would think of me; a disease ridden girl, a burden. That night I called a flat meeting, all 10 of us squeezed into my bedroom, all sat silently listening to my “story”. I told them in much greater detail than I had anyone before about my diagnosis, prognosis and treatment. I remember the looks on their faces and I am proud to say none of them were of pity. When I finished most were a little teary but not with sadness, they were proud of me and happy I felt comfortable enough with them to talk to them about it. My flat then did something absolutely incredible; they made jokes! They made me laugh! They treated me no differently and carried on as if normal whilst assuring me they would all be there if or when I needed them.

I am very blessed with the group of friends I made at university. Now I don’t shy away from explaining I have a life-long cancer, but wear it as a badge of honour. My friends at university have been the best support network I could have asked for; supporting me when I need them but always keeping me smiling, happy and optimistic. 

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