Whilst the rest of the world reals in resentment, fear and anger at the novel coronavirus rampaging through our communities, as someone with a lifelong degenerative health condition, it has served as an intriguing moment of reflection for me.

The maze

It is often extremely difficult, if not impossible, to explain to someone who is unaffected by serious long-term health issues, what it is like to be at the mercy of a disease.  There are many mental, emotional and sometimes spiritual paths that one walks down when faced with such a diagnosis and the uncertainty of the future that it brings.  Almost like being stuck in a maze with many pathways to explore, you have to walk down many of them to either find a way out or discover what lies at the centre.

Clearly it is not possible in this situation, to rid yourself of the disease and escape the maze completely, but it is possible to reach the point of acceptance and peace at its centre.

I think, and hope, that this is where I am now.

I’m not sure if I have reached this point, because I have simply explored all of the paths, if I have sat with my diagnosis and wondered about the paths for long enough. I find myself reconciling training as a medic with helpful spiritual guidance from Buddhism. I do not profess to be totally comfortable in this maze.  Indeed, each time I develop a new complication or receive an additional diagnosis, my exploration of these paths begins yet again.  Each time this happens, my well-trodden routes guide me, and I reach the central point of the maze where acceptance and peace reside more quickly and efficiently.

In the early days, this maze contained very volatile and raw emotions for me.  Each path leading me down a different thought process or emotional journey.  As I sit here in this moment of reflection amid this pandemic, I can see many people now caught up in that very same maze I once charged around, trying to find the elusive way-out or indeed, the centre where acceptance and peace reside.

There are many parallels between the emotional, mental and spiritual conflicts and paths taken by someone with a life long diagnosis and someone finding themselves living in the time of a pandemic.

The ‘new normal’ and living with a life-long illness

During the last six months, I have heard many phrases that have transported me back to times stuck within the maze’s paths.  ‘How do we beat this?’  ‘I hate this new normal’  ‘How long are we going to have to live like this?’  ‘I feel so out of control of my own destiny’  ‘I just wish life could go back to how it used to be’.  These are all out there to be found within the maze, some of these paths are more painful than others, but all of them have the potential to stall you and keep you trapped and lost for many weeks or months.

Living with a life-long illness for many, means that your future is uncertain.  For some, it is not knowing how long they have to live, for some it is not knowing what state they will wake up in from day to day.  The uncertainty takes many forms, different for each diagnosis and each person.  Now, for the wider world, not knowing when lockdown will end or when local restrictions will be imposed or lifted; not knowing if you can go on holiday next year; not knowing if one of your family members will be taken by this virus at some time, now all of us are experiencing uncertainty in one form or other.

Living with a life-long illness for many, means feeling a loss of control.  Your disease is in the driving seat and for some, there may be little you can do to influence which paths it transports you down.

Learning from COVID-19

Now, for the wider world, there is a novel virus in the driving seat with the many members of our communities co-piloting.  Together, they are driving the direction of this pandemic and there is little each individual can do to hugely influence this.

Many lifelong diagnoses lead to some form of loss of function, either immediately or with time.  This can leave us mourning our previous abilities and the life we had with them.  With loss of function comes increasing dependence on others for help or care and ultimately if significant, these losses can lead to a loss of self-worth, a loss of pride and a new definition of who we ‘are’.  They may mean the loss of a career; they may even mean the loss of a family for some.  These can be huge life-changing events that change everything that person once thought of as constant.

Likewise, many individuals in this pandemic are having their functions restricted, either at work or away from it.  Our jobs are different, our social lives are different.  Everything is different.  Thankfully, my spiritual path of Buddhism helped me to break down many of the concepts that are invoked in these negative effects.  The teachings of impermanence, no-self and emptiness prepared me well, not only for a life with my disease but also for life in a pandemic.

This aside, even without my spirituality, life in this maze because of my disease was one of the best preparations for this present pandemic I could have asked for.  Sitting here at its centre, knowing each path in the maze intimately and having well-trodden routes through each of them showing me the way back to acceptance and peace, I finally feel some of the benefits of my time spent in here.  Yes, this pandemic has been hard for me too in many ways, but I haven’t had the psychological battle that the rest of the world is currently fighting.   I’ve already had my battles and found my way through.

Conclusion

Sitting here, I see company for the first time.  After many years alone in this maze, there are now others joining me.  Others who are here for very different reasons, and who have taken their own way through the maze’s paths.  This is deeply rewarding for any doctor, to understand the pathos of their patients at a personal level. Not people who have life-long illnesses, but those people who we have so desperately been trying to communicate with about what having a life-long condition is like, but never could.  In some ways this cruel, terrible and dangerous virus, will have achieved something that very few people have been able to achieve – provide a glimpse of life with a life-long illness to those without illness.  There are clearly so many negative things that this pandemic has brought, but I have always tried to live by the philosophy of finding the positive things in every negative event.

Maybe this pandemic really is uniting humanity in ways that were never possible before.  This bridge between doctors and some patients could be extremely valuable indeed.

Dr Kelly Lockwood

Dr Kelly Lockwood is the founder and leader of the Disabled Doctors Network, aimed at chronically ill/disabled doctors, medical students, their colleagues, educators, trainers and anyone else requiring information or support regarding inclusion in the medical professions as a person with a chronic illness or disability.  The guidance and support offered by this Network is deeply rooted in lived experience and Kelly herself has a complex degenerative health condition and has been a wheelchair user for almost ten years.  Dr Lockwood is also a GP, currently specialising in the health of medical practitioners at NHS Practitioner Health.

Declaration of interests

I have read and understood the BMJ Group policy on declaration of interests and declare the following interests: none.