I HAVE BEEN living with a rare illness for most of my life. For the majority of this time, I have kept it in secret, 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 affects 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 in the pituitary gland, which mainly has the job to regulate 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 would only be a temporary fix.
The ‘Taylor Swift’ of print
Writing about my experiences living with a rare illness, allows me feel like the ‘Taylor Swift’ of print, expressing my feelings about situations and negative attitudes I face through the power of writing.
At the age of 13, my parents noticed that I had developed an unusual gait. I was brought to the doctor and diagnosed with “tight hamstrings”. A limitation which could be treated with physiotherapy, but despite these therapies, I continued to degenerate.
At the age of 16 I had an MRI scan on my brain, which showed signs of the disease I was diagnosed with when I was three. It 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, okay maybe a few complications but nothing of major impact.
The life I knew
The next minute, being helplessly thrown into a 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 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 seven years. I was facing this illness alone, convinced I was the only person on this planet unlucky enough to be dealt with such fate.
Missing girl
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 eight, 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.
A regular teenager
I was a regular teen, with a personality, interests and aspirations, who has unfortunately been dealt a harder life than most. However no one wanted to give me that chance to prove their theory wrong.
Music has been my rock through these dark days of undesired change. Relating to songs which, I felt told a similar story to my own.
I am now 20 years old, studying journalism in college and in a relationship for the past year. I am still in a wheelchair and still untreated for my illness. I would like to spread awareness for this degenerative, rare and life altering disease.
I refuse to let the wheelchair define me, not entertaining a lot of language terms, like the description “disabled” attitudes and approaches towards wheelchair users, as I see them as an ignorant and an unacceptable way to behave.
My aim in media 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 those whose voices are normally ignored in society, my eyes have been opened since I was forced to live in similar conditions.
Niamh ní Ruarí is a 20 year old journalism student, living with a degenerative rare disease. She writes about her extraordinary life on her blog, which you can view here. You can follow Niamh on Twitter @nell13_
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