There is an evolutionary view that sadness or at least wariness and caution are the natural state of Homo sapiens. To be human is to be anxious. Happiness is a reward for when the paycheck of fear is cashed through survival. This view on why we are as we are is perhaps too abrupt in a world where humanity exists as a collective all dreaming the same fantasy of life unbothered by illness. Life has become far easier for us now than it was for our distant ancestors and so the old instincts of wariness become dulled by our access to technologies and supermarkets. Yet when serious problems arise our old instincts are not far behind.
To be ill is to step away from the masses and become an island of experience that we aren’t taught about and often do not get to learn from others until illness is upon us. For many people this new world comes with unspoken rules: the first is that we must not burden people with our illness, they should learn what it is to be unwell when their turn comes. The second is that death is a private and discreet thing. No gnashing of teeth or wailing in the corridors, please. When you’re told your time is up the civilised thing is to quietly shuffle off your mortal coil with as little fuss as possible. Such a stoical mindset is philosophically appealing to many people. We live lives in which we are taught that hard work and self sacrifice are meritable attributes. However, just as Simon and Garfunkel noted that no man is an island illness makes dependents of us all. Our choices therefore can become narrowed down to whether we ask for help if we are lucky enough to have people close to us or throw ourselves upon the state.
It seems that the culture that has grown around choice in treatments and longer lives has conversely left many with less choice and more potential for suffering.
There are no quick fixes here. As a society we are diverse and one solution won’t fit all people. If there is a way to helping people feel more empowered and more able to share their burdens then it is to encourage discussion earlier. Many groups exist to help people feel comfortable talking about illness and dependency but attendance remains on the fringes of the many who could benefit. As health care professionals we have seen diseases becoming increasingly more chronic than they were. With chronicity comes greater potential for extended disability and these things rarely crop up in consultations that focus on treatments for longevity, not for life. There has been a trend towards recognising quality of life as a goal and this is good but may be amorphous or too scantily acknowledged for some. Additionally we don’t see quality of life discussions in many acute admissions despite those admissions representing changes in a person’s physical functioning.
It is a privilege looking after people during their toughest periods in life and it is a joy watching people get better. But as better increasingly fails to represent independent living we all have a duty to consider talking about life with additional needs beyond the purely medical. Every health care worker can help- whether it is to listen, to empathise, to sign post or to guide we can help people live better. So when you next see a person with a chronic illness consider asking them if they’ve planned for a time when they may need more help. Consider pointing them to organisations that can help them plan ahead and above all recognise that it takes a village.