The other day while waiting in the specialists office I overheard a conversation between the two receptionists. They were lamenting the loss of someone they knew to cancer. In less than hushed tones one said to the other “…She just went to the doctor one day feeling like she had a flu and a bit run down… and 4 weeks later it took her!… Still, at least she didn’t suffer long!…”
And there it is. When it comes to some illnesses, time and time again people remark “at least they didn’t suffer…”, especially true when it comes to things like cancer. I said this too when my own mother died of cancer some 9 weeks after her diagnosis.
No-one likes to suffer. The world abhors watching the suffering of children, animals and even the odd publicly disgraced celebrity/politician. Everyone it seems, except the chronically or long term ill.
For the Chronically ill we face a lifetime of everything from suspicion, disinterest, apathy, judgements and being ignored. The world seems to have little empathy for the chronically ill and the life time of suffering which we must endure. In all these years I have never really understood this and I don’t think I ever will.
I have seen doctors and nurses fawn over children crying from a vaccination, lament with the heartbroken and even forgive the bad choices of the drug addicted but when it comes to extending any sort of humanity to those who must live with terrible and incurable pain, often for the rest of their lives, we quickly find the human limits of empathy and support.
I have heard countless stories from my fellow Chronically ill and Autoimmunes who have shared the most appalling stories of waiting years for diagnosis and treatment, months for specialists to return calls and days in emergency rooms for help with pain management.
The fact that Chronically Ill patients deal with the most severe pain each and every day and for decades is almost incompressible to the average, healthy human being. Could this also be the reason that it receives so little help and understanding? Could it be that it is so impossible to understand the day after day, hour after hour, minute after minute suffering of the chronically ill that we reach the limits of our compassion and humanity? Is that why my tears of pain are ignored when I sit in specialists office with a sick bag, or when I am rocking back and forth with pain in the medical imaging room, however the young teenager who has bruised his foot playing soccer is offered a comfortable pillow and an ice pack? I wish I could understand it but at the same time I don’t want to understand it either.
I don’t want to understand why some people’s pain and suffering matter more than someone Chronically Ill. I don’t want to know why someone who has suffered an emotional loss is extended more kindness and assistance than someone who has lost their careers and physical identity; forever. Many of us feel as thought we have crossed over into some other dimension where we are behind an invisible wall. People see us but no longer hear or listen. People move around us without having to acknowledge our pain and challenges. We are outside the compassion of most people, and how we bare what we bare and live through what we live through is something that very few doctors, therapists, counsellors and even loved ones can ever understand; nor want to.
So as I approach another anniversary of dealing with daily pain, another round of failed medications, another painful and agonising relapse and another year of being invisible to most of the world, I realise the only thing I really want to achieve with the rest of my life is to love those people who have stuck by me and to make sure that I do whatever I can to help the rest of the Chronically ill. I want to do everything I can so that one day there will be support and empathy for the many millions of people living with the most painful and debilitating illnesses on a daily basis, so when it comes to suffering… “they don’t have to suffer for long…”