Life after a serious diagnosis
Compassion in Dying’s Peer Navigator Service supports people with the emotional and social elements of living with a new diagnosis or long-term condition. It can help someone to come to terms with a new diagnosis, work through information about their condition and talk to their family, doctors and employers about their situation. And offers practical help to access local and national services for further support.
My day at A&E in 2018 will always stand out as the day my life changed irrevocably and dramatically. A very severe headache and nausea led to a diagnosis of a Subarachnoid Haemorrhage or a bleed in the brain — a condition that is often fatal and always carries long-term impacts on your health.
The diagnosis journey
From that evening, through two brain surgeries, two weeks in hospital and until my return home, things were hectic and anxious; but I was in a hospital and surrounded by doctors and medical professionals who I trusted and who saved my life.
My real journey of recovery started once I was home. I finally had time to process what had happened and what could happen in the future, and I felt anxiety and despair in equal measure.
The changes caused by my condition seemed to impact every aspect of my life, it felt unfamiliar and unexpected and I was ill-prepared. Basic tasks like coming down a flight of stairs felt exhausting and it often felt that things would never get better.
Adjusting to a new way of life
However, in retrospect, there are many things that have helped me adjust to my new life.
It is these things, along with my experience, that I hope to share with others on a similar journey in my new role as Peer Navigator.
It can be little things, which seem so obvious, that make a difference — like noting down the names of the condition or the tests suggested, to finding out how to access local counselling services, or financial support if your condition impacts your ability to get back to work.
The idea that my life would ever be more than a cycle of waiting for test dates, result dates and doctors’ appointments seemed impossible yet here I am — with a life very different from before but a happy one nevertheless.
Here to help
There are so many challenges that a serious illness imposes on you and finding ways to deal with them can often be very overwhelming. During my own recovery I tried out many things to help myself, some that didn’t work but some that did and are now, hopefully, lifelong habits.
It is this experience that I want to share with others.