I grew up with long hair. Not a problem really as it was the late 70s, early 80s. But it was long for a reason—to hide my hearing aids, as if they were an embarrassment or to avoid being belittled and ridiculed in the presence of other people. Fighting to be part of the hearing world. To be as “good” and as “normal” as everyone else. Fitting into the hearing world but not quite there, and not part of the deaf world. In a sort of limbo.
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Others recognize “blind.” People see the wheelchair. People don’t see “deaf.”
Something was wrong. Their only child took ill and was rushed to the hospital. Doctors unsure of the problem, but concurring that there was indeed an issue. The small boy who “doesn’t listen,” “ignores instruction,” and who is “disruptive” (my parents knew that—the school reports said so, but with no mention of the possibility of deafness) has another issue, an unknown issue, that needed further investigation.
A childhood of tests, needles, hospitals, and biopsies eventually revealing I had Alports Syndrome, a renal disease, genetically passed from parent to child that affects collagen in the Glomerular Filtration Membrane, the retina and lens in the eye, and the cochlear in the ear. Typical presentation: haematurea, proteinurea, vision disturbances, deafness, and tinnitus. I was number 23 in the UK with this condition and subsequently promoted from a small regional hospital to a large hospital in Central London.
Over the years, there were frequent day tips to London that consisted of needles, tests, and various procedures.
When I got older and left home, I moved to London—and cut my hair short. I was making a statement.
In 1989, the inevitable happened. It was December and dialysis began—initially haemodialysis followed by Continual Ambulatory Peritoneal Dialysis (CAPD). I still worked and played cricket—I needed to be “normal” and as “good” as everyone else.
The hyped expectation of that call, in the end, didn’t meet my dreams and expectations. I had turned my pager off (no mobile phones in those days) and went out for a pizza with friends. Shhh—I was breaking the dietary guidance for Renal patients but stuck to the 500ml/day fluid intake allowance! Got home late and the answering machine was flashing…
That moment, that feeling, was like no other I had experienced. Excitement. Jubilation. Fear. And then a sudden tidal wave of guilt. The nurse urged me to come to the hospital immediately; they had been trying to contact me for a number of hours. The room was clinically clean with a TV mounted to the wall opposite the bed—golf on one channel and news updates relating to the first Gulf War on the other. I chose golf.
I couldn’t sleep.
The kidney transplant was the next day.
Life post-transplant is amazing. You’re alive! You can eat and drink normally. Most restrictions are gone. Freedom!
Some restrictions remained, and there was something new to be experienced, too. Discrimination.
I had an overwhelming desire to give back to the National Health Service (NHS), a way to say thank you for the “gift of life.” So, I applied to be a nurse. There were a few extra medical tests than my fellow student nurses to complete, but these were manageable. No problem. My first experience of the discrimination occurred following the completion of the training.
I was offered a full-time position on the surgical ward of a local hospital where I had been a student nurse. All my fellow students were offered permanent contacts. I was called to occupational health.
“Why did you ever do your nurse training? You are not fit to be a nurse.”
“We cannot offer you a job, you will be too much of a liability to work here.”
I had to fight again, even though I’d had the transplant, to be accepted as “normal” and as “good” as everyone else. The compromise: I could get the job on the ward, but they could terminate my contract if I took sick time in the first nine months.
I felt that I had to push myself—I can’t be seen to be weak; I have to put in the extra effort so as not to be singled out. I cannot let my hidden disabilities get in the way.
I succeeded as a nurse—I ended up in the Intensive Treatment Unity as a senior nurse. I found ways to adapt.
I have a fear, when completing medical questionnaires prior to, well… anything. Jobs. Activities. Insurances. They all trigger this fear.
Will I not be considered for a job because of my deafness or transplant? Will they stop me from participating in that activity?
No life insurance is possible, as no pre-existing conditions are covered and most things can be linked to renal! There are excessive travel insurance costs in order for renal condition/transplant to be covered. It’s an ongoing battle. It’s easy to slip into a quiet sedate corner and let life pass you by. But NO! I need to fight and not let these hidden disabilities get the better. Fight.
My job interview with PRA Health Sciences was different. The people interviewing me were interested in me. My skills. My personality. I felt, maybe for the first time, comfortable with me. I didn’t need to hide deafness or the transplant. I could be me. Don’t get me wrong—I didn’t advertise the disabilities, I just felt comfortable that I didn’t need to mention them, and even if I did, they would be accepted. This was quite a transformation for me, from my upbringing and from the walls I had constructed around me after the comments following my nurse training. I felt important at PRA from the start.
As a result of my journey, I am also very aware of hidden disabilities people may have and the emotional struggles people may have as they try to fit in. As a manager, it was important not to be blinded by the hidden disability, but instead focus on the person in a holistic manner, especially in an interview situation. Knowing that the support network within PRA would be there was a definite plus point.
As part of my journey through life, I tell myself that every new day is a day to live to the maximum. It’s a cliché, but for me it’s personal. I owe it to my donor and to the bravery of his family, having to make such a decision in an awful, unprepared for situation. I owe it to the brilliance of the NHS staff and to all the researchers and research participants prior to my dialysis, transplant, and then immunosuppressant treatment.
I have dedicated my life to research as a result. As a patient, an ITU nurse, Research Nurse, CRA, Project Manager, Manager of Clinical Operations, and now sharing my knowledge and experience as a Lead Quality and Training Advisor. It has been and still is a privilege.
Outside of work, I have dived, sky-dived, flown a plane and helicopter, and ride my motorcycle around some of the most stunning areas of the UK and Europe. But, in a way to help the NHS further, I volunteer as an emergency Blood Biker, transporting bloods, samples, equipment, and urgent samples between hospitals in Wales over weekends and public holidays, completing 12-hour on-call shifts, night or day.
It is my way of saying, “Thank you.”
A hidden disability is nothing to be ashamed of. It is a fact. A reality. A hidden disability needs to be accepted by all, not discriminated against. As I look back over my life so far, I can say, “I am as “normal” as and I am as “good” as others. I have achieved. I have contributed. I have been an active team player.”
I have made a difference.
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RARE DISEASES NEWSLETTER Volume 5, January 2017
This quarterly publication will keep you up to date on PRA’s Rare Disease Team focus, achievements, and new initiatives.