Becca opens up about how having SMA led to her developing severe anxiety and depression as a teenager. She talks about her experiences of learning how to cope with her mental health, and why health professionals need to provide more emotional support for children growing up with muscle wasting conditions.
Anxiety controlled my teenage years'
As someone who was born with a severe physical disability, I am no stranger to hospital appointments and medical procedures. Within the first six months of being diagnosed with spinal muscular atrophy type 2 (SMA), I was given an electric wheelchair, standing frame, and casted for a torso brace to keep my spine straight. I had seen occupational therapists, physiotherapists, and neurological consultants. As I grew up, any physical deterioration of my condition was dealt with and I was given support, whether that meant new equipment at home, or surgery. But nobody helped me or my family with the emotions that come with having a muscle weakening condition.
My anxiety took us all by surprise
At 15 years old, the reality of what my disability meant for my future came crashing down on me. I can remember the day that something in my brain switched. I was getting the train to Brighton with my carer to have a girly shopping day. I felt so sick on the way there and my heart was racing uncontrollably. When we started walking to the shopping centre, I almost threw up and we had to go home. I told my parents that I thought I had a bug. But that evening, I broke down and told them that the idea of leaving the house filled me with dread. I was paranoid that I would be sick in public and not be able to lean over a bin. I was worried I would need the loo and not be able to go – there were not many Changing Places toilets ten years ago. I was worried I would choke and be nowhere near my ventilator.
Over the next 18 months, my anxiety progressed rapidly. It would make the very things I was worried about happen. I would vomit at least once most days before school. I sometimes had to come home in the middle of the day because my anxiety caused irritable bowel syndrome (IBS). I barely did anything outside of school without my mum because I felt she was the only one who would know what to do if I choked or suddenly became ill.
As a child, I sometimes spent half the year in hospital or homebound with chest infections or viruses. I developed severe OCD around germs for fear of becoming ill. If anyone coughed of sneezed near me, I was convinced I would end up in hospital. I would have panic attacks if I had to go for doctors appointments because I felt like they were full of germs. Even at home, I would ask my family to wash their hands 50 times a day. My anxiety controlled my life. And theirs.
The scariest part was that all of this stemmed from a fear of dying, and my anxiety created such physical symptoms that actually made me ill, it was like a vicious cycle.
Unlike when I had chest infections and doctors would decide on my treatment, I knew that only I could stop this. I felt so alone and angry with myself.
It took years of therapy, and starting anti-anxiety medication, to reach a place in which I was able to cope with my situation. Every therapist I spoke to said that it was understandable given what I had been through and will experience in the future. I couldn’t help but think, if that’s true, why aren’t we offered mental health support, or even warned about the need for our parents to monitor our mental state, at any point growing up?
Mental health is just as important as physical health
Doctors are trained to deal with the problem in front of them; they try to find a solution to an issue or a plan to stop any further decline but don’t often consider a patient’s emotions. At hospital appointments, I would be asked if the pain from my spinal surgery was improving, but not about how I was coping with the trauma of waking up from the operation still intubated with nobody there to tell me why. Or they would look at an x-ray after my latest hospital admission and ask how I felt my breathing had been recently, but not about how returning to school after not seeing my friends for over a month had gone.
Every physical decline has unspoken effects on our mental wellbeing, whether that be medical trauma, loneliness and isolation, or anxiety about what the future holds.
I’ve always wondered how my teenage years and early adult life would have differed if my mental health had been as open and natural a discussion as my physical health. Would I have had such a fast and unexpected decline? Would I have felt less guilty about it?
Living alongside anxiety and depression
I’m now 25 and feel like I have finally made peace with the fact I will likely always have dips in my mental health. Some days I wake up and know it’s going to be an anxious day. Some days the world feels dark and I wonder why was I given this condition.
I let myself have one of these days occasionally, because I know tomorrow, I’ll pick myself up and carry on.
I’ve lived away at university and got a first-class degree, moved into my own home with 24/7 care support, and work full time in a job I love. I have achieved all of these things whilst living alongside anxiety and depression, but it hasn’t been easy.
So much more needs to be done to help children and their families deal with the emotional impacts of having a muscle wasting condition. And recognising that change needs to happen is the first step.
If you’re struggling with your mental health, we are here to help.
Muscular Dystrophy UK Helpline
Phone: 0800 652 6352 (Monday-Thursday, 10am-2pm)
Email: info@musculardystrophyuk.org
