Having been in remission from Severe Aplastic Anaemia for over 10 years, I have always felt extremely lucky to have survived against the odds and to live with such a good quality of life today. I remember while I was receiving treatment how desperate I had felt to be normal like my friends at school, to be able to play out, take part in the school sports day and spend time with my sister in our Wendy House at the bottom of the garden. But, years later when I finally started to be weaned off Cyclosporin and my hospital appointments changed from weekly to monthly, I remember feeling an overwhelming sense of panic. I thought this was silly at the time, I had wanted this for such a long time, so how could I not just be happy? What I didn’t understand at the time was that I had become accustomed to a life at St James' hospital where my days revolved around treatment, transfusions, infections and appointments, so anything else felt like something out of the ordinary for me, as such things like going back to school were extremely daunting.

The psychological burden

Unfortunately, this wasn’t the only psychological burden I was left with after surviving this rare and life-threatening illness. My journey with AA involved two rounds of immunosuppressive treatment, where I suffered with the awful effects of serum sickness, multiple infections, viruses, transfusions and Desferal to reduce the iron build up. Consequently, these had an impact on my physical appearance. I lost a lot of weight but also found that my face was constantly puffy due to the steroid medication. I looked unwell most of the time and I was terrified that I would lose my hair like the many other children around me on the ward.

This all impacted my mental health at a crucial stage in my emotional development, even though my parents had always said how resilient and happy go lucky I had been, very rarely showing any signs of anxiety through this whole experience.

In my early 20’s, after struggling with anxiety and a mixture of emotions that were having a big impact on my wellbeing, I went to see a child psychologist. Often once the physical scars have faded the psychological ones surface and we sometimes need some help to heal those wounds. At this time, I felt extremely guilty for having survived the illness as I had always been aware of children who I had become close to that had passed away, and because of this I felt a huge responsibility to do something meaningful with my life – which is a big challenge to any 20 something year old. I was tormenting myself about the kind of life I thought I should have been living and felt like I wasn’t doing enough to show my gratitude. I also had some very big changes and difficulties to contend with which left me feeling like my life was spiralling out of control – this I believe triggered anxiety which had built up during the years I was being treated for AA however, as many children do, I had disassociated from my
feelings at the time.

The healing

Whilst receiving therapy I learnt a lot about how trauma can impact our brains, especially childhood trauma. Thankfully, with the support of my wonderful family I was able to begin to process all of the traumatic events that had been stored away in my brain and were conjuring up all of these difficult feelings; I also found closure on some particularly difficult moments from the days I had been fighting for my life.

After months of therapy, the psychological wounds started to heal, and I began to plan the life I wanted. I had a new sense of independence and urge to spread my wings, so I travelled down the east coast of Australia on my own just months after returning to work. Since then I’ve achieved some things that I am really proud of.

I now live a life not bound by finding something meaningful to do with it, but by enjoying each chapter and embracing the new opportunities or challenges that come my way.

Blog by Alice