Updated: Dec 8, 2022
In the first piece of a new series from writer Becca Torricelli, she discusses some of the challenges she's faced with her mental health while living with her own disability...
As someone born with a severe physical disability, I’m no stranger to hospital appointments and procedures. When I was diagnosed with Spinal Muscular Atrophy type two at 14 months old, a team of professionals from across the South East of England was assigned to my case.
Within six months of my official diagnosis, I’d received an electric wheelchair, been seen by physiotherapists for a standing frame, and cast for a torso brace to keep my spine straight. I’d seen Occupational Therapists to supply me with a toilet seat at home, respiratory specialists to assess my lung function, and neurological consultants to coordinate all my care.
While my physical needs were met at every stage of growing up, I discovered that my mental health wouldn’t receive even close to the same support, and this would become one of my biggest struggles to date.
Multiple studies have shown people with disabilities are three times more likely to experience mental health issues than able-bodied people. I am part of this statistic.
At 15 years old, the reality of what my disability meant for my future came crashing down on me. It took years of therapy to reach a place where I could cope with my situation. Every therapist I spoke to said that how I felt was completely understandable given what I had been through and will experience in the future.
But if this is the case, why aren’t disabled people offered mental health support or even warned about the need for our parents or carers to monitor our mental state?
Doctors are trained to deal with the problem in front of them but are not trained to look holistically at the state of a patient. Every physical decline of a disability has unspoken repercussions on aspects of our mental health whether that be medical trauma, loneliness and isolation, or anxiety about what the future holds.
When I was old enough to contribute to 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 how returning to school after not seeing my friends for over a month had gone.
The only reason I was given mental health support was because my condition had declined alarmingly from my physical symptoms of anxiety. I was offered Cognitive Behavioural Therapy more than a year and a half after my mental health had spiralled. It took me 18 months to learn coping mechanisms just to get through my day; 18 months before I was stable enough to even consider working on the reason for these fears and what could be done to reduce them.
Learning how to live with the cards I have been dealt as a disabled person has been one of the hardest lessons, and the earlier we are given space to process this, the easier the journey becomes.
Offering parents and carers counselling to work through a child’s life-changing diagnosis will give that child a much better chance of receiving the care they need. Offering art therapy, for example, to a child about to have major surgery will allow them to learn about how they’re feeling and why, putting them in a better position for recovery.
And offering family counselling about how to introduce boundaries for a teenager who requires 24/7 care will encourage healthy relationships with family and relationships later in life.
This cannot be offered without adequate funding, but recognising that it is necessary and beginning these discussions, is the first step in the right direction.