We at I Can Make It are always on the lookout for young people with disabilities or long term health conditions who want to share their success stories with us when it comes to navigating the obstacles in the path to employment. Before her star turn in her recent “I Can Make It Presents” video, Carrie Boyce wrote this interesting story of how having been diagnosed with severe dermatomyositis early in her career, she ‘swam for the music that saved her ʼ all the way to the Royal Society of Chemistry. Carrie the blog space is all yours…
“Swim for the music that saves you when you’re not so sure you’ll survive.” Not just lyrics from my favourite Jack’s Mannequin song, but words I live by every day.
In 2009, 10 months in to my first ‘proper’ job after graduating from university, I was diagnosed with severe dermatomyositis. This rare disease caused my immune system to go into overdrive and start attacking my muscles so that any movement I made was agony. Ultimately, I lost the ability to speak, swallow and lift my head off the pillow. It’s not something you expect when you’re 22, supposedly with your whole life ahead of you.
The trouble with rare diseases is that no one really expects them, or has a clue what you’re on about when you mention you have one. There’s a lot of trial and error involved in treatment and recovery and that can be frustrating to say the least.
Perhaps unsurprisingly, I had to stop work and move back home with my parents, spending three months in hospital and eventually undergoing four rounds of chemotherapy to bring the condition under control. For a while it was unclear if I’d pull through - while I wasn’t immediately on death’s door, I was certainly crawling up his driveway. What followed was 12 months of physiotherapy and rehabilitation to regain my strength, mobility and independence.
At the point where I felt ready to return to work, I tested myself with a part time job in retail. After a few months of coping fine, I considered my next steps. Having to quit my first job meant I never received closure with that role, so when a similar position opened up I jumped at the opportunity to return to my old life. This role came with a little added responsibility, and allowed me to move back to a city I knew well. The familiarity allowed me to regain my independence and confidence in a safe and supportive environment.
To look at me now you wouldn’t know anything was wrong. In part this is because I work really hard to stay healthy but my condition is also managed with regular medication. In saying that, I still go through periods of exhaustion, colds affect me more than the average person and quite often I feel stiff and sore. Having dermatomyositis isn’t an obvious disability, and as a rare and chronic condition it’s hard for people to understand or relate to it. It has forced me to reconsider my career prospects and priorities in life. I’ll never make it working long hours in the city, for example, but it turns out – that’s ok. I was worried I’d struggle to find gainful employment after my recovery but I’ve been really fortunate with my employers to date. After a bit of explanation and context from my doctors they have given me flexibility in my working hours, allowed me to work from home when I need to and take leave for regular blood tests and hospital appointments.
Currently, I work for the Royal Society of Chemistry, widening participation and increasing public engagement with the sciences. The job involves a lot of project and events management, communications and stakeholder engagement. I love it.
If I were to give three pieces of advice to anyone returning to work with a disability it would be: Be patient with yourself. Be kind to yourself. And never, ever stop swimming.
Outreach Executive, Royal Society of Chemistry
If you’re disabled, aged 18-29 and have a story that you’d like to share with us about overcoming barriers to employment, then please get in touch with Leo Capella via email@example.com.