My journey with chronic lymphocytic leukaemia (CLL) began in an unexpected way. At the onset of the COVID pandemic in March 2020, I contracted the virus and eventually recovered, yet my physical health continued to feel 'off'. Further investigations led to a diagnosis of CLL by September of that year.
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 start treatment, I suffered a setback when told I would be on active monitoring.
Very keen to get started, I suffered another setback when told I would be on active monitoring (also referred to as watch and wait) and may not start treatment for a while. However, getting up to speed with CLL and treatment options I realised this was an advantageous position to be in. I was told by a few healthcare professionals I was lucky to have CLL and not the other types of acute leukaemia. I certainly did not feel lucky and did not understand why people would tell me this. I soon realised that having CLL was more akin to taking a scenic train journey rather than being on an express train.
I was determined to use this time wisely and get myself physically fit for what was to come. After all you would not climb a mountain without putting in some preparation and training. 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.
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 upon learning that I was living with chronic lymphocytic leukaemia (CLL).
Throughout my life, I have 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. In a strange way the CLL legitimised some of my unusual behaviours. People were understanding and accepting of my explanations, though less interested in my detailed analysis of the condition and drug side effects.
I had difficulty processing everything, especially as I usually and immediately imagined the worst-case scenario and went as far as planning my funeral down to the last detail, ensuring even the service lasted exactly thirty minutes. Eventually, I sought counselling through Macmillan, but found the experience challenging, particularly the expectation of making eye contact with the therapist; I would have preferred sitting at an angle, to the side or even with my back to her.
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. My GP was also really understanding due to a personal experience of cancer and again reinforced the notion of hope which challenged my catastrophic thinking. I found exploring the concept of hope therapeutic as it steered me to having a more positive mindset.
I also 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, especially when completing the self-referral forms after encouragement from my GP. Over the years I had dismissed the suspicions of others, even feeling I had superior knowledge. I thought it best to seek an assessment. Until then, I had attributed my behaviour and emotional restraint to maternal deprivation following my mother’s death during my early childhood. Initially, I felt foolish upon diagnosis, 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.
There have been unexpected benefits of CLL as an autistic person.
Given the choice, no one would wish for a life-limiting condition such as CLL. Nonetheless, I have experienced some unexpected benefits, particularly when 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. Since my CLL diagnosis, I have had a new topic to explore.
The diagnosis has also 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. The treatment regime provided a reliable structure that could be integrated with my usual routines. Additionally, my meltdowns have been viewed more positively, recognised as a coping mechanism in the face of my condition. To others my diagnosis has become my master status rather than autism, but to me being autistic is more important as it has shaped me as a person. Besides, I have recently come to realise I have had it all my life. Having autism is 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. The bright lights, noise, and proximity to others were especially challenging, particularly at night. My preferred sleep routine relies on total silence, darkness, and a comfortable mattress, none of which were available in hospital. The constant interruptions for injections, blood tests, bleeping, drips, and observations made quality sleep impossible. I was therefore relieved to have most of my treatment at a day unit and home. The health care system is not really geared to people with disabilities, especially those with autism.
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. I was also super critical as a former nurse educator who knew the health care system well, especially what to expect from nursing practice.
CLL exacerbates other health issues, including very dry skin, gastrointestinal disturbances, joint and muscle pain, fatigue, and frequent infections. The necessity of taking extra precautions can increase feelings of isolation. All this fuels my obsession with health.
Should I feel lucky to have CLL? My answer now is 'yes'.
If I did not have CLL I would never have been diagnosed with autism within a brief time from referral. My autism diagnosis has helped me understand myself better especially my past behaviour which I and my family can finally put into context. Having CLL has made other people relate to me differently in that they are more understanding of my neurodiverse behaviour.
CLL has begun to change my mindset to move away from catastrophic thinking which is a common problem for autistic people. Instead I am more positive, embracing the notion of hope. CLL has given me an interesting new topic to explore. My scenic journey with CLL has enabled me to meet so many inspiring passengers with their own unique journeys.
I am also grateful for the wonderful NHS and the skill, competence, and dedication of my healthcare team. They help to keep me alive and each day I am grateful for this and thank Nye Bevan for not having to worry about the cost of it all. Finally, this is my unique story and gives an insight into how one individual with autism experiences having a CLL diagnosis.