As a child with a physical disability - I have a muscle-wasting condition called congenital myopathy - I had more than my fair share of hospital appointments when I was growing up. I still have memories of going to combined clinic appointments with my paediatrician, occupational therapist and physiotherapist as a child. At one such appointment when I was 12 or 13 years old, I remember my paediatrician talking very candidly with me about whether or not I wanted to have children in the future. I remember him looking me in the eye and assuring me that it would indeed be very possible.
Looking back, it strikes me as a little odd that we could openly discuss things like fertility and other physical issues which seemingly had priority. And yet we never really touched on another significant topic - mental health issues, and the impact they can have on people with physical disabilities.
Living with a physical disability as a young person can sometimes be extremely isolating. On the one hand, for me, growing up in the able-bodied world was great. My friends never made me think of myself as being 'different'. They treated me as any other person; they saw the person behind the disability, rather than just the condition. But at the same time, there was always going to be instances where I faced medical problems that they were unable to understand. Without someone else with a disability to talk to, someone who had been in my shoes and could answer my questions truthfully, it was easy to feel alone.
Young, physically disabled people often experience mental health issues, but receive little support. Muscular Dystrophy UK's survey on experiences of being newly diagnosed shows that this can cause a huge amount of distress, with a lasting impact. More than fifty per cent of people said they had experienced feelings of depression when coming to terms with their diagnosis, and one in five had felt suicidal at some point in the diagnostic process.
Medical professionals often focus on the young person's physical disability and not on their emotional wellbeing during this difficult time. As a result, experiencing depression and social anxiety is often seen as an unavoidable part of having a disability, rather than something that no young person should have to experience alone.
I first experienced major mental health issues as a teenager, when I moved away to university. I'd chosen to stay relatively local for my studies, but had insisted on getting a room in the halls of residence, because that was what everyone else my age going to university was doing. It very quickly became clear, however, that I was not ready to live alone. I tried to be as independent as possible in all aspects of my life, but struggled to look after myself. I couldn't cook and barely kept clean. I went from being in a relatively small, supportive school and home environment, to a university of thousands of students where I had no friends or family nearby, and had to build a new academic and personal support system from scratch. I felt like I was drowning.
This took a huge toll on my mental wellbeing. Seeing all of the other students around me, and all of my friends from home, coping well, even thriving, with this new stage in their lives, made me feel like there was something wrong with me. I didn't feel comfortable socialising around alcohol, which ruled out most student nights, in case I fell over and no-one could help me. I developed severe social anxiety, rarely leaving my room except to go to class. It was particularly difficult over the Christmas holidays, when I moved home and refused to return to halls for exams.
I wish I could say this was the point when I decided I needed help, and started talking to someone about my mental health. The fact of the matter is, I didn't. I didn't - and still don't, sometimes - feel like anyone really understands.
Support for mental health issues can be hard enough to come by, but as a young person with a physical disability, it can be even more difficult to seek out effective support. Having to explain how your disability affects you, to someone who may know very little about living with a disability, on top of having to deal with difficult discussions and emotions, can put you off entirely from seeking the help you might need.
I believe paediatricians, physiotherapists and other doctors who see young people with disabilities on a regular basis should be trained to spot the signs of mental health problems, and even be prepared to preempt these issues. By maintaining an open dialogue with young people, we can tackle the stigma surrounding mental health and disability. We need to provide the life-changing mental health support that is so often needed.
Mathy is a member of Muscular Dystrophy UK's Trailblazers, a network of young disabled people who campaign to remove the barriers that stop them from living full and independent lives.
If you would like information or support on muscle-wasting conditions, please contact the Muscular Dystrophy UK Information and Support Team on our free helpline.
If you are experiencing suicidal feelings, please call Samaritans on 116 123 or email firstname.lastname@example.org
Young Minds Matter is a new series designed to lead the conversation with children about mental and emotional health, so youngsters feel loved, valued and understood. Launched with Her Royal Highness, The Duchess of Cambridge, as guest editor, we will discuss problems, causes and most importantly solutions to the stigma surrounding the UK's mental health crisis among children. To read more blog posts on the issue, click here. To blog on the site as part of Young Minds Matter email email@example.com
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