A wonderful member of our community has kindly shared their story with us.
"Life with chronic illnesses is like a maze. You know the type, full of high hedges and dead ends, and ultimately only one way out. It feels like I’ve been through several of those since I’ve been journeying with MCAS. I’ve been unwell for 26 years. I didn’t know it was MCAS until 18mths ago. I didn’t know that all the many and varied symptoms and diagnosis were mainly, due to one thing. I approached a doctor about various cardiac symptoms and was diagnosed with MCAS. It was like going shopping for apples and returning with a chair.
During this time, I have lost many things. I have lost jobs, friends, income, spontaneity, and myself. I grieved those losses every day. It felt like just as I would get over that period of longing, tears, frustration, and pain, I would face another ‘new normal’. A new symptom or symptoms would emerge, and I would have to start all over again, becoming acquainted with it, and relearn my life.
I had to adapt my career to these ‘new normals’. The ironic thing is that due to illness, I have been nudged down the paths of many different careers, which I probably would never have done. I think I’m a living example of the phrase “necessity is the mother of invention”. I always wanted to be a singer-songwriter, but I was always encouraged to get a proper job, and so I trained as a Nurse. However, when I got to a big birthday ending in a zero, I decided to try music college.
I could no longer work in my career due to illness, in fact I hadn’t been able to work for several years. I have absolutely no idea how I did this, when i think about it. It was extremely difficult and extremely gratifying, at the same time. After that I started a business with a friend doing dance and vocal workshops. I did the vocal bit. During this time, I was also in bands and had a small music agency for people who sang or played Jazz. I loved this time so much. However, the number of ‘new normals’ would approach thick and fast. The fatigue, poor memory and cognition, pain, allergies, IBS symptoms and general weakness meant that I could only do all this in a very compromised way.
There came a point when I had to give it all up, as I could no longer cope. I come to another dead-end in the maze. For a few years after that I was unable to do anything very much. I thought that maybe I could do a further music course, with many adaptations for me thrown in, but I had to give it up after 4 weeks. For another couple of years, I was in the maze trying to find my way out. Then a chance find, and a lightbulb moment lead me to an M.A in Writing for Musical theatre. I applied and got a place. Again, I started on the course full of hope and with many adaptations included to help me. Again, I only managed six weeks. However, I remained on the team as the writer and lyricist. I worked from home, when working from home wasn’t even a thing.
My musical opened in a theatre in Covent Garden to critical acclaim for a three-night run. I was amazed, and I didn’t quite believe it. The play was then chosen for a theatre festival the year after that. The year after I’d finished the full-length version, it had a two and a half week run at the same theatre. The play was published, and songs from it were regularly played on musical theatre radio. This is an international radio station dedicated to musical theatre. During the process there were several ‘New Normals’, new symptoms, and setbacks with my health, but I did bits of writing where I could.
My next completed play was a dark comedy drama about living with a chronic illness and is semi-autobiographical. It was on at two different theatres for online runs, in the earlier part of the pandemic. It was nominated for an “offie”, an award for best plays of the year. This was a very proud moment for me. I have since written two more plays, one of which last year came in the top 20 of a competition with over 1,200 playwrights.
As well as several symptoms the illnesses have given me writing. I could really do without the illness bit, but the writing I absolutely love. I can do it at my own pace. I also get to express myself and, in those moments, still be me. At this point, I’ve found myself out of the maze, and although I still battle with illness and constantly changing symptoms every day, I’ve managed to find a different me, and I’m glad for that at least."
Sign up to become a Friend of Mast Cell Action so we can keep you up to date on our progress and on how to get involved in our latest campaigns and initiatives.
Mast Cell Action relies entirely on the generosity of people like you. Please make a donation now and together we can make a difference to those affected by MCAS.