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Living with a hidden disability, and why life goes on


I’m Sophie, and I have a hidden disability. To look at me you wouldn’t know that I was any different, but I guess that is both the blessing and the curse of my condition.

Doctors say that I am a bit of a conundrum. When I was 13 years old, I developed two severe curves in my spine and had to have my spine fused.

After this surgery I then developed chronic fatigue syndrome and missed two years of school. I muddled through my GCSEs and A-levels (English exams), and it was during this time that my enthusiasm for travel began to take root. I wanted to be a veterinary nurse and work with animals so during my school holidays I would do work experience in zoos and organisations around England. Seeing and coming into contact with animals in this way, I knew I wanted to see them in their natural surroundings and understand the environments they came from.

But then, another hurdle to overcome. Towards the end of my A-levels I started falling over. At first I laughed it off as clumsiness but soon it got worse, to the point where I could no longer walk unaided. Eventually I was diagnosed with hydrocephalus, which means I had water on the brain. This extra accumulation of fluid was putting pressure on my spinal cord and the signals from my brain to my legs were not getting through. Hence, the inability to walk.

It was at this point that doctors decided to inset a shunt into my brain, a decision that saved my life. The shunt, a little piece of tubing, acts as a valve which constantly drains the excess fluid from my head to my abdomen. The day of the surgery I was wheeled into hospital in a wheelchair and two days later I was walking out. The relief I felt was undescribable. For so long I was worried my condition was incurable, then all of a sudden I had my life back.

My zest for life was back, and despite having had 10 brain surgeries on my shunt in the years since, I felt good.

I managed to get my degree in veterinary nursing and was working at my local vet practice full time, but then things started to go pear-shaped… again. My new zest for life was wonderful but it was also a curse. I wanted to do everything but I struggled with exhaustion and anxiety. I fought it for a long time before I was forced to leave work, thankfully finding support in my local Headway brain injury group.

A brain injury effects every part of your lifestyle and it is often hard because it is a hidden disability in most people. If you look at me you would not know anything was different. However, my brain is working over-time just to keep up with the normal functions and stimuli of life. Now this isn’t the part where you’re meant to feel sorry for me, that is not what this is about. I’m writing this piece as I want to educate everyone that people with hidden disabilities can achieve and have as much right to try things as everyone else. They may have to do it in a slightly different way, for example I’ve got a lifetime doctor’s ban from boxing, jumping out of a plane and bungee jumping. But trust me, I have and will continue to find ways to get my adrenaline pumping.

I like to call my hidden disabilities my hidden abilities, and nothing will stop me from living my life.

I am now back at work doing the job I love, just in a different way. I work part-time and have specific jobs that I do that play to my strengths and make me feel like a part of a team.

From a mental health perspective things do change after brain surgery, and for me it was Post Traumatic stress after many medical evacuation flights off Guernsey (a small island where I live) and long stays in hospital in England. This stress manifested in the form for anxiety. I’m a true born worrier and after surgery this only became worse. However, I am lucky in that I have a very supportive family who have helped me to find new things to focus on including art, travel and my (growing) menagerie of animals. I have four shetland ponies, two horses, three cats and my latest addition, my little Yorkie!

Travel has become my other passion. Most people with shunts can fly long haul no problem but I am a little different. I can only manage 5 hours on a flight before the pressure in my head starts to go funny again. At first this stressed me out, because how the hell am I am going to see the world?

But now I just do things a little differently. If I want to fly far away I do several shorter flights to break it up, or I just hop on a Contiki coach, by far my favourite way of travelling.

If you’ve made it this far, thanks for sticking with me. If my story inspires even just one person with a hidden ability to book a trip, I will have done what I set out to do!

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