Brushing your hair, tying your shoes, making a cup of tea. All simple, everyday things that I'm sure most people wouldn't have to think twice about doing. But when you live with a muscle-wasting condition, it often means putting in significantly more time and effort in order to do these mundane, supposedly easy tasks. It can be exhausting, not only physically, but also mentally.
The theme of this year's Mental Health Awareness week, 'surviving to thriving', really struck a chord with me. It's something I've thought about a lot as a young person with a disability living in an able-bodied world. That feeling of barely being able to cope, whilst others seem to fare so much better, is one that I've struggled with constantly over the years, and I know it's something that many other people like me face as well.
The first time I really started to notice these feelings was during my first year at university. Whilst most of my peers were enjoying the freedom of being away from home and flourishing under this new-found independence, I found myself struggling with even the simplest everyday tasks. I saw my flatmates juggling their studies and social lives relatively successfully, whereas I could barely function from one day to the next. I felt isolated, like everyone else was swimming circles around me, and I could hardly manage to keep my head above water.
As I entered my twenties and became a 'real adult', I found that there were more expectations put upon people my age that I would also struggle to achieve. We were expected to get a job, find a relationship, maintain an active social life...but once again, I felt as though I was facing a hurdle at every turn. If it wasn't a physical barrier to accessing places that excluded me, then it was a societal barrier that singled me out as different and prevented the inclusion and 'acceptance' of my disability. The more I tried to keep up with my peers and their burgeoning twenty-something lives, the more I felt like I was barely surviving as a young adult. And my mental health suffered as a result.
These feelings of inadequacy that are prevalent amongst our generation are often compounded by the pressure we feel to live a 'perfect' life - or at least present one outwardly online. In the current age of social media, where online profiles are equally as important as our real-life personas (if not more), we find ourselves creating and presenting a warped, overly-positive version of reality. With this one-dimensional view of life, it's so easy to start measuring up to others and focusing on our faults. I know I'm not alone in comparing myself to people my age and worrying that I was just coping with my life, not flourishing the way others seemed to be.
Living with a disability, and particularly with a rare, progressive condition, can be challenging, and its effects can be felt in every area of life. Provisions for the physical effects of these conditions is the primary concern for many health professionals. However, support for mental health and wellbeing is also hugely important, and something that is often overlooked. Schemes such as Here for You: Mental Health Matters from Muscular Dystrophy UK, which aim to invest in better support training for healthcare professionals and make tangible changes to the current offerings for mental health support, are vital in helping people with disabilities to move beyond simply just coping.
I wish I could say that I no longer struggle with feeling as though I'm surviving when other able-bodied people my age are thriving - or seem to be, anyway. But the reality is it's still a fight to tread water every day. As a society we must continue to fight back against the stigma of mental health and talk about it more openly. Helping people to identify when they need professional mental health support and manage their mental health and wellbeing is important, particularly for young people with disabilities who struggle with the impact of their condition and can't always find the support they need. Considering disability holistically, as both the physical and mental effects of a condition, and making sure the right support is available, can help people to not only cope with the physical impact of their conditions, but to also be able to thrive and live life to the fullest.