Sickness and pain are universal experiences that are part of being human. But most people experience them as something passing that happens every now and then over a lifetime. But others like myself experience it as a daily fact of life that changes in degree but is always present. Among the challenges that plague those of us who live with chronic pain and illness, one of the most soul crushing is the pressure to stay silent and not express the suffering we feel. Social norms and responsibilities, the desire to be useful and productive, to have fun and be positive around others — these pressures cause us to practice a brutal yet banally systematic suppression of negative emotion. It’s accepted to complain to your friends when you break your leg or get the flu. But when you are suffering every day, you cannot complain out of fear of burdening people, casting a shadow over their happiness. No one wants to be seen as broken. This emotional self-mutilation hurts, too, so this is my attempt to practice openness.
Like anyone else, chronically ill people have good days and bad days. But when you have chronic pain or illness, “good” days are better described as “less bad” days. This means that if you ask a chronically ill person if they are feeling better, and they say “yes, thank you,” this doesn’t mean they are feeling healthy or well in the sense that you understand it. In most cases, it means they are back to some kind of status quo where they are somewhat able to continue managing their daily life. They are at a point where they can muster the strength to hide their pain (again). They may be feeling better, but they are still hurting.
The longer a person suffers, the longer they practice emotional self-suppression. It’s a refined art and an expertise that is completely invisible to the outside world. In fact, sometimes chronic pain sufferers may be accused of being weak or overly sensitive: we might sometimes have more trouble coping with physical or emotional stress than the average person. However, this is because getting up in the morning and going about simple daily activities can be a monumental challenge in itself. That’s why it is so hurtful and depressing when loved ones or doctors are frustrated and disappointed with us: we wish our daily triumphs were recognized, but usually it’s a saga that plays out privately in our own minds.
While a lifetime of suffering trains chronic patients to become experts in hiding pain and acting as if nothing is wrong, no length of illness enables us to feel the pain less or to get used to it. Pain is pain, and the body hurts whether you experience it for a moment or for a decade.
Chronic pain and illness often means having a tumultuous love/hate relationship with life. My bad days often lead me to question the value of living, but my good days fill me with a kind of hope and joy that I think it’s hard to understand if you are not constantly in pain. It’s hard to describe the glorious feeling that comes on days when we can think, I’m hurting like hell, but today it’s okay, I can get through this. We appreciate the little things in life very deeply because they are often fleeting — here now and gone in a flash. Simple things like breathing, moving, hugging, become precious. Pain is our enemy, but also our teacher, our secret self, lodged in a corner of our heart like sand in an oyster.
Death may often be on our minds, and we may refuse to live and work as though it were a distant fiction that only the elderly need consider. If this is the case, please accept our choices. Not everyone is cut out for the 9 to 5 corporate job; the spouse, two kids, financial responsibility; — nor is everyone cut out to party all night, jump out of airplanes, go hike across a continent. Not everyone can muster the will and energy to live the life that seems normal, healthy, meaningful, and respectable to those around them.
Instead, sometimes we have to cry, let you down, break plans and promises; make unexpected choices, say socially inappropriate things at the moment the feeling rises; sometimes we have to live a life that looks a bit ugly and haphazard from the outside, but if you are flexible and open, listen and accept whatever we need to do to get through the pain and come out on the other side, you help us to live authentically: a fully, simply human spirit, who conquers the world on good days.