Personal experience
Robert's story
Living with chronic lymphocytic leukaemia and autism - and the concept of hope
I was diagnosed with chronic lymphocytic leukaemia (CLL) in September 2020. This news came four years into my retirement, following a lifelong career in the NHS and nurse education. Accepting the diagnosis proved challenging, and I felt a profound sense of resentment, largely because I had always prioritised a healthy lifestyle and kept up-to-date with the latest healthcare developments.
Very keen to get started, I suffered another setback when told I would be on watch and wait (also referred to as active monitoring) and may not start treatment for a while. However, getting up to speed with CLL, I realised that having CLL was more akin to taking a scenic train journey than being on an express train. I was determined to use this time wisely and get myself physically fit for what was to come. I was already into healthy living with exercise and diet, except for a love of wine. However, I decided I needed to give up alcohol as I knew there was no safe limit and my liver and kidneys were going to be in for a rough ride. One area which I neglected was my mental health.
During the years before my treatment commenced, I struggled psychologically to adjust to my new reality and make sense of my situation. I found it particularly odd how people reacted when I told them I was living with CLL. Throughout my life, I’ve had difficulty understanding the subtleties of human behaviour and communicating effectively with others. Social occasions and gatherings were always problematic and something I tended to avoid. The diagnosis unexpectedly became a valid excuse not to attend such events, and for the first time, my absence went unchallenged.
“ I had difficulty processing everything, especially as I usually and immediately imagined the worst-case scenario. Eventually, I sought counselling, but found the experience challenging.
During a session, the notion of hope was raised. I realised that not all was lost, and my rigid thinking was not helping me cope. I found exploring this concept of hope therapeutic as it steered me to having a more positive mindset.
I spent time with my autistic grandson, whose behaviour at school had changed.It dawned on me that no one had explained my diagnosis to him, so I took the opportunity to do so in language he could understand, emphasising that hope remained and that I would be unwell from time to time. After our conversation, he returned to his usual self, and our frank discussions and silences resumed.
At sixty plus, I began to suspect that I might be autistic. Over the years I had dismissed the suspicions of others and attributed my behaviour and emotional restraint to maternal deprivation following my mother’s death during my early childhood. When first diagnosed with autism, I felt foolish having spent my career working with people with profound autism in clinical practice and with others at the other end of the autism spectrum in a university setting. I had subconsciously gravitated towards these environments for the comfort of safety and routine. Previously, I took some satisfaction in my ability to see autism in others, but never turned a critical gaze on myself. However, the autism diagnosis has given me a sense of peace.
And there have been unexpected benefits of CLL too. Given the choice, no one would wish for a cancer diagnosis, but I am now reminded to focus on the positive aspects of my life. This was difficult at first as I seemed to have spent a lifetime fighting happiness. As someone with autism, predictability, routine, and certainty are crucial. My CLL diagnosis has renewed my motivation to maintain a healthy lifestyle. I have concentrated on supporting my immune system through regular exercise, a nutritious diet, avoiding smokers and alcohol, ensuring quality sleep, managing stress, and maintaining a healthy weight.
I have recently come to realise I have had autism all my life. It’s like playing rugby, while others are playing football on the same pitch. The rules are different as we try to understand the similarities but struggle with the difference. The majority want me to play by their rules, but I settle for knowing we all want to win.
Attending a large general hospital for treatment was a nightmare scenario for me as an autistic person. Being immunosuppressed meant that being among other ill people was a significant risk and the noise and inability to sleep were difficult. I was therefore relieved to have most of my treatment at a day unit and home.
While there was some comfort in routine, any deviation – such as delayed medication, meals, or assessments due to busy nursing staff – could trigger a mini meltdown. CLL exacerbates other health issues, including very dry skin, gastrointestinal disturbances, joint and muscle pain, fatigue, and frequent infections. All this fuels my obsession with health.
Having CLL has made other people relate to me differently in that they are more understanding of my neuro-diverse behaviour. CLL has begun to change my mindset to move away from catastrophic thinking, which is a common problem for autistic people. Instead I try to be more positive, embracing the notion of hope. I am grateful for the wonderful NHS and the skill, competence, and dedication of my healthcare team as well as Nye Bevan, the founder of the NHS.
“ CLL has given me an interesting new topic to explore. My scenic journey with CLL has enabled me to meet so many inspiring people with their own unique journeys.
Explore more lymphoma stories at lymphoma-action.org.uk/Stories
