I have been living with a rare illness for most of my life. For the majority of this time, I have kept it in secrecy, not allowing anyone to know of my abnormality. This routine came to a halt about seven years ago, when my faults became too visible to hide.
I was three years old when I was first diagnosed with Histiocytosis. It effects one child out of every 200,000. I was left with an incurable side effect, called Diabetes Insipidus. Which is the lack of a hormone called ADH which regulates the intake of fluids and urination.
I was treated with a mild dose of chemotherapy shortly after diagnosis. However, years to follow, I was to find out that this treatment was only a temporary fix.
Writing about my experiences I face living with a rare illness, and the negative attitudes I face based of my current condition allows me to feel like the ‘Taylor Swift’ of print, expressing my feelings about situations I face through the power of writing.
At the age of 13, my parents noticed that I had developed an unusual stride. I was brought to the doctor and was diagnosed with “tight hamstrings”. A walking limitation which could be treated with physiotherapy; despite these therapies, I continued to degenerate. At the age of 16 I had an MRI scan on my brain, which showed the disease I was diagnosed with at three years old was now attacking my cerebellum, the part of the brain which controls mobility, coordination and motor skills.
No one understands how it feels, when one minute, everything is alright; OK, maybe a few complications, but nothing of major impact. The next minute, being helplessly thrown into this new lifestyle; facing possibly permanent changes, having little to no say on how my future will turn out and being perceived as ‘incapable’ because of my image. Although my parents, my brother, my friends, my boyfriend and all those close to me all recognise my pain; none of them will ever experience first-hand the loss of the closest person anyone will ever have; yourself, inevitably my life was to change forever.
I had degenerated from walking independently to needing a wheelchair in the space of three years. I was facing this illness alone, convinced I was the only person on this planet unlucky enough to be dealt with such fate.
I depend on memories and photographs now to remind me of who I was, before I went missing, before the independent and confident part of me disappeared, and was replaced with this ‘feeble, dependent on others’ girl. I hated being reminded of the times during my struggle and decline of mobility, knowing the chances of finding that independent girl again would be almost impossible. I deleted pictures, videos, everything that might have reminded me in the slightest of the times of my transition from walking to mere existence.
My whole life plan had been disrupted. Since the age of ten, I wanted to have a successful modelling career, but I knew that my current situation had crushed these dreams. I thought no one would want a “crippled” girlfriend, one who society would reject, based on the general portrayal of those with any indication of abnormality. I was a regular teen, with a personality, interests and aspirations, who unfortunately had just been dealt a harder life than most. However no one wanted to give me that chance to prove them wrong.
I am now 20 years old, studying media journalism in college. I am still in a wheelchair, and still untreated for my illness. However I refuse to let the wheelchair define me. I don’t entertain a lot of terms and approaches people have towards the physically impaired, as I see it as an ignorant and unacceptable way to behave. My aim now is to re-educate society on the perceptions they have of those who are physically less fortunate. As oblivious as I was to the treatment of most whose voices are normally ignored in society, my eyes have been opened since I was forced to live in similar conditions.