It’s important to preface this piece of writing by saying that change is afoot. In the depths of my struggles with chronic illness in the early 2000s, the words ‘mental health’, be it positive or negative in tone, weren’t really a part of the British public’s register. Whether this would have changed the experience of my own journey, I don’t know. What I do know is that the conversation has never been so open and ready to be had, arguably for good reason.
After diagnosis of cystic fibrosis (CF) aged six weeks old, my life was relatively unexceptional. Until I broke my tibia and fibula in a skiing accident when I was 14, I played football. I played football for my school and I played football for my county. When my leg was mis-set, I was never really very good at football again- so I started to skateboard and did so at every available opportunity for the next three years. What I didn’t do for those early-mid teen years was anything that I didn’t want to do. I didn’t take my maintenance antibiotics regularly, and I didn’t ever seem to be able to remember to take my enzymes. We’ll put this down to typical juvenile vanity and denial about the situation I was in.
Long story long, my neglect for those years caught up with me around the age of 18. Spookily enough, it happened to coincide with becoming legally allowed to drink. I would regularly go out with my friends, get home at five o’clock in the morning and be sat in an A-Level chemistry seminar less than four hours later. This didn’t last long.
For the next six years, I was in and out of long in-patient stays at the hospital in Leeds, experiencing non-invasive ventilators, lithotripsy (ouch), a nephrostomy (ouch), central venous access implantation without general anaesthetic or sedation (ouch), gastrostomy insertion (ouch) and three lung transplant assessments (all failed).
Vitally, a mandatory component of organ transplantation assessment is psychological evaluation. Enter Gary, a clinical psychologist. Gary’s job was to see if my state of mind was robust enough to cope with lovely, happy little ideas like organ rejection and the so-called ‘survivor’s guilt’. Whilst Gary’s assessment was over and done with pretty quickly, it was abundantly clear to me that I needed more of his time to come to terms with everything I had missed and everything that I was going to miss.
I became conscious that I was obsessed with my mortality because it was so fragile. Everything about my life during those years reinforced how precariously balanced on the abyss I was.
The problem with my situation in particular, is that I am an expert by experience. That is to say that after living with CF for thirty years now, I know everything there is to know about my situation – be they metrics, statistics or prognosis. I knew at the time that there was a very slim chance that I would ever be in a position to have what was conventionally regarded as successful life. From a family of academics, I wanted to achieve. I wanted to love. I wanted to be content. I was so angry that I was to be denied those things because of something I didn’t choose. My mental health was suffering greatly.
Coping with a rare disease can take many forms, and I am lucky that I have been able to slow the progression of my illness through exercise and by committing to taking all my medication and doing physio sessions every day. I feel like I have taken control – I have become the person I wanted to be. A lot of the hand wringing anxiety I used to suffer has abated. I still see Gary and have done for nearly 13 years now.
Self-development and searching for a greater understanding of my mind and emotions for me will never end, since my illness and its impact will never leave me.
With my particular chronic disease, all the time that I put into it is preventative and not topical – in plain English, the majority of my effort to look after myself doesn’t equate to immediate reward or symptomatic relief. However, for the first time in my life I have bought myself time and a strong foundation upon which to pursue my passions. In the last eighteen months my life has change dramatically because I, a) managed to keep myself relatively fit and well and b) I found my passion. Like never before my life has transformed and I have exploited every opportunity which has come my way. My work in patient representation has taken me back and forth across Europe and landed me a position at the European Health Parliament on the Robotics, Artificial Intelligence and Precision Medicine Committee. If you’d have told me that I would be doing that just two years ago, I would have laughed at you.
Thomas was diagnosed with cystic fibrosis six weeks after birth in 1988. Now 30, Thomas is an international health advocate and consultant working mainly across Europe. With a particular interest in human genomics, ethics and mental health, Thomas currently works for the European Health Parliament based in Brussels (serving on the Robotics, Artificial Intelligence and Precision Medicine Committee) and with the Health Research Authority (serving on a Research Ethics Committee) and will talk publicly to anybody about any of these things given half the chance!