For Myotonic Dystrophy Awareness Day, Katy shares how her condition has progressed over the last 30 years, what life looks like as a mum with a disability, and how our Peer Support has helped her find purpose.
Myotonic dystrophy has affected three generations of my family, but we haven’t let that stop us
I was diagnosed with myotonic dystrophy when I was 12, but we didn’t know it had been part of my family for generations. My mum had a stroke when she was in her 40s which led to her being diagnosed with the condition. This led to me being tested too, and we later realised my grandma had also had the condition, and she had lost a baby because of it.
I was lucky that I didn’t start showing symptoms until my early 20s. The first thing I noticed was struggling with stairs. It was a moment I had feared for so many years. I was a single parent by then, and my son needed me, so I had to adapt and get support quickly. It helped that I was already under specialist doctors and we knew what we were dealing with.
Learning to adapt to Motherhood
When my son was little, he learnt that mummy had to do things differently. Children are very accepting, and for him it was normal that I might need more time or find another way to do something. It was hard to accept at times; you want to say yes without thinking, but my body didn’t always let me. I moved into a ground-floor flat and eventually had to stop working, but I kept building my life around what I could do, not just what I had lost.
My life now looks different from how I once imagined it, but the main thing is that it’s still full of love. At 44, life has just begun again as I’m a full-time mum to my four-year-old, and my husband is my full-time carer. Needing care can feel like losing little pieces of independence, but it also shows me how much love and teamwork there is in my life.
I have good days and bad days. Some days I feel full of energy, but if I do too much, I regret it the next day. My mind often wants to do more than my body can manage. I’ve learnt to listen to my limits and rest without feeling guilty, but that took a long time.
The progression of my condition has been hard to accept
Whilst my condition was reasonably steady for a period, things have recently felt harder. I can hardly walk now, so I use an electric wheelchair. I’m currently on the waiting list to get splints, which will help support my weak ankles when I walk a few steps around the house.
Trying to accept another thing that my condition has taken from me is hard, but this transition has been one of the hardest. I try to focus on the independence it has allowed me to keep though, like walking our dog.
Other health issues come with having myotonic dystrophy too, one of which is eye problems. I’ve had cataract surgery and recently has a lid lift on one eyelid, but there was a problem and the surgery has damaged my eye. I’m now under a different surgeon, and they may need to reverse the operation which has been a real unnecessary worry.
Lately, I’ve been telling people I have so many hospital appointments it feels like I need my own revolving door! Humour helps, but underneath it I’m just tired of it all.
Being a Peer Support Worker has allowed something good to come from my condition
After doing a college course, which touched on the importance of peer support. My PA suggested I might want to look at becoming a Peer Support Worker for Muscular Dystrophy UK using my own lived experience
I’ve been volunteering for two years now and absolutely love it. Through supporting two lovely people who also have myotonic dystrophy, I’ve learnt peer support isn’t about having all the answers; it is about listening, sharing experiences and being able to say, “I understand,” and really mean it. Sometimes knowing someone else gets it, can make a difficult day feel less heavy.
It works both ways too. We support each other, and that connection is valuable. I have met one of the people I support in person, and we are even planning to write a book together about our experiences to help others.
For Myotonic Dystrophy Awareness Day, I want people to know that this condition can be unpredictable, frustrating and tiring, but it doesn’t take away who you are. I’m still Katy: a mum, a wife, a creative person, a volunteer and someone who wants to help others feel seen. Myotonic dystrophy may shape parts of my life, but it doesn’t define me.
