James shares what his teenage years have been like living with Becker duscular Dystrophy (BMD). He looks back at how facing physical struggles when he was younger, getting diagnosed soon before starting high school affected him, the mental health challenges he’s faced and small, but necessary things that need to change in society.
“Being diagnosed with Becker just before starting high school really affected my mental health”
When I was diagnosed with Becker muscular dystrophy in 2021, I had just left primary school and was beginning to transition into high school. It was a tough blow; I was already finding the transition difficult as it was, and then suddenly I had a name for the aches, pains and struggles I had been living with.
Seeing BMD run in my family made me more fearful
My grandad has it, my mum is a manifesting carrier, and my younger brother has now been diagnosed too. When I was younger and first began experiencing the aches and pains, I avoided going to the doctor because I was scared. Prior to my diagnosis, my mum already had a rough idea of what was happening as my grandad had been diagnosed years before me. After my diagnosis, my mum had begun her own journey with BMD, firstly being misdiagnosed with fibromyalgia before she was finally seen by a doctor who didn’t ignore her symptoms which led to her finding out what was really going on.
While on the surface I was managing my diagnosis fairly well, beneath that my mental health was rapidly deteriorating.
Once the transition period between schools was in full swing, I began discovering new physical and mental struggles. The aches and pains I began to suffer with more frequently caused my psychological health to worsen quicker than I thought I could handle. I was anxious most of the time. Some days I struggled just to walk into school and relied on my dad to take me.
Through this, I hid my mental health issues. However, after I finally broke down and realised what I needed, I was referred to children and adolescent mental health services (CAMHS) which began to help. Though what helped me more than anything was the constant support of my mum, dad and each person in my life who cared about me.
“I found that I began to feel excluded from aspects of the school. I’ve figured that while support systems in schools can be helpful, extra steps should be taken in attempt to encourage Special Educational Needs & Disabilities (SEND) students to socialise more.”
Having an invisible disability can feel lonely
My Becker symptoms are currently invisible, and I’m grateful the condition hasn’t progressed too much yet, but it also means people don’t always understand it.
“I’ve often had people say, “You don’t look disabled,” which is hard because it makes you feel as if you’re less important than somebody who has visible symptoms and that they just think you’re being dramatic.”
I might look like I’m coping extremely well on the surface, but I still deal with pain, exhaustion and restrictions every day.
My high school was around a 15-20 minute walk away. In earlier years I used to get the bus, but later on I pushed myself to walk when I could because it helps clear my mind. It gives me space to think and makes me feel like I’m doing something positive for myself. I still have to listen to my body, but finding a balance is key.
Sometimes you can feel forgotten about
There’s one moment that showed me the kindness of people while also showing the lack of understanding around conditions like muscular dystrophy. This was when my friend, Harris, completed an abseil to raise money for Muscular Dystrophy UK. He raised over £1,000, which was amazing, and he received recognition at school and even a letter from the House of Commons.
I was incredibly proud and grateful for what he did. However, it was quite frustrating that the recognition he received failed to acknowledge to why my friend did the abseil in the first place. It made me feel like the struggles of myself and my family were irrelevant because there was money involved. To some it might sound small, but to me it felt like an example of how people with conditions can be pushed aside, even by the people and systems that should be listening. Fundraising matters, but so does recognising the real lives behind it.
It gets better
I’ve found my passion as a result of my struggles. I have now chosen my college courses, where I will be doing Psychology, Biology and English Language at A-Level. I’m determined to use these subjects to pave my future in helping people with muscular dystrophy live the life that they deserve.
I wanted to share my story to tell anybody struggling with a muscle wasting condition that life doesn’t have to be defined by your disability. While I can’t take away the difficult parts of the condition, I can tell you that you can still have goals, friendships, and a voice alongside pride in yourself. You can still make a difference in the world.
I hope that by speaking honestly about my life, I can help other people feel a little less scared than I did.
