I am joining the dots on some conversations I have had recently – it is disheartening that so many people who are stuck with chronic health conditions find themselves battling on so many fronts.
They have their condition to contend with, which is often life-altering, but at the same time they are fighting prejudice and stigma. They are in a perpetual struggle just to be heard, let alone understood.
Similarities in experience
These conversations have also led me to think about the similarities in people’s struggles with such conditions – their narratives, as it were – and how we could harness these similarities to fight together for change.
Take my Lightning Process client, a young person diagnosed with narcolepsy and cataplexy, and a prospective client I talked to very recently with CFS. Narcolepsy is a condition that results in a person suddenly falling asleep because their brain is unable to regulate sleeping and waking patterns; cataplexy, a sudden loss of muscle control, often coexists with narcolepsy. The prospective client with CFS explained that they live in a country where, as they put it, doctors don’t recognise Chronic Fatigue Syndrome yet, making it very difficult to access help of any kind.
Yet having a diagnosis doesn’t seem to make much practical difference for many people. Both have experienced not being believed and being misunderstood. Both face false assumptions about their character and the cause of their condition, and both receive an astounding lack of empathy. Each struggle to get support – even, in the case of my client with narcolepsy, from those actually charged with their welfare.
Stories of stigma and misunderstanding
The significant medical advances we’ve seen in some places across the world sometimes seem to make only a limited impact on the difficulties people face in their day-to-day lives. We are still hearing the same stories today as we were hearing 20 years ago when the Lightning Process first started: stories of being stigmatised, disbelieved, and misunderstood.
Might Covid-19 be the tipping point?
Might Covid-19 offer an opportunity for us to change this narrative?
I saw a headline in early March saying that the NHS is bracing for one million people living with post-Covid-19 syndrome (often referred to as ‘Long Covid’).
Sadly, we are now hearing client stories from people living with Long Covid that are disturbingly similar to those with CFS/ME/PVS – stories of meeting scepticism and a lack of understanding of their condition.
The impact of Long Covid on people’s ability to live and work normally and to care for themselves and their families is huge. Given the sheer number of people affected, it seems possible that this could trigger more openness about the range of options for help and lead to greater funding for research.
Ensuring a ripple effect from Covid-19 research
So, what can we do to ensure that any progress made for people with Long Covid will ripple out to benefit people with other chronic health conditions as well?
I believe it is important to recognise the interconnectedness of different conditions – the diagnoses (for those who can get them) may be different but a lot of the battles can be the same. We need to stand in solidarity with each other, reaching across the lines of diagnosis to fight for better understanding and accommodation for all people with chronic health conditions.
The example of sleep loss
A good place to start could be supporting each other’s awareness initiatives and advocating for research, strengthening connectedness and empathy. Sleep loss is an example. Many people with chronic health conditions have sleep loss in common. In that vein, coming up on 12th – 14th March is Project Sleep’s ‘Sleep In 2021’ event. This is an initiative to raise awareness about sleep health, sleep loss and sleep disorders, including narcolepsy.
The aim of Sleep In is to focus awareness on the importance of sleep, rest and relaxation – vital pillars of health – and to advocate for more awareness and empathy for those who struggle with the profound effects of sleep loss, including those with sleep disorders.
Check out Project Sleep’s website for more information on the events scheduled and how you can get involved: https://project-sleep.com/sleepin/