In my time with these diseases I have had the honor of meeting the most remarkable people I have ever met in my life. Amongst some of the reasons that I find them so unbelievably brave, courageous, genuine, kind, intelligent, respectful, supportive and caring people is not just because of all that they have been through as the come to terms with the changes and effects of these terrible diseases, its also because of how they have coped with the painful and cruel comments, while they fight for their lives.
It never ceases to hurt my heart and spirit when I am told tales of the treatment and actions of other people and I always try and tell myself that it is the result of sheer ignorance which allows them to say and do what they do; it helps me maintain my hope that people are basically good and simply act out of ignorance and not out of cruelty.
One of my dearest friends, whom I shall call Angel for the purposes of this story, recently told me how she was thrown into terrible emotional pain when she was accused of being the cause of the terrible pain that currently haunts her every moment because she “chose” to take high doses of steroids to treat her autoimmune condition. I was without words. Speechless at her disclosure and the cruel comments of someone she considered a close friend, I struggled to find comforting words. What could I say? Even now as I type this Angel sits in a hospital bed away from her darling family and home and fighting the most severe pain that most people would / could never even imagine let alone bare. More painful than childbirth or third degree burns.
Unlike other diseases and illnesses in the world, medications for Autoimmune diseases are very much a trial and error approach. The medications that we take for inflammation to joints and organs are the same ones that slowly poison our bodies and destroy our bones, muscles and chemicals balances inside our bodies. The drugs that we take to kill off the cells that are attacking our own bodies also kill off the good cells. The chemotherapy and immune suppressing drugs we take to stop problem A is slowly and surely causing problem B to eat at our bodies. The pain meds we rely on to be able to do things like shower, eat, toilet, breath are also the type of controlled drugs that you read that cause damage to nervous systems and are highly addictive i.e. morphine, Oxycontin, Valium etc… but what choices do we have? None really.
There is this prevailing belief amongst the pain free and mostly healthy world that we are where we are due to choices and where we “choose to be”. Our life is all simply choices with no notion of randomness or chance. We are told we can overcome anything with a positive attitude and believing that we can wish things into being with the power of the mind. I put all this down to inspiration porn and that basically people are control freaks and either we SHOULD all be striving for greatness and success or we will be deserving of whatever befalls us (in short no trace of humanity or empathy). I might have even subscribed to this thinking a long time ago, but my eyes have been forever opened.
It is probably because of the perpetuation of this thinking that most people seem to believe that all sick people have caused their own pain and disability or that they are “choosing” not to get better, or worse still, that they are faking their illnesses if the medication haven’t restored them to full health. This shows the level of ignorance that is endemic in society today.
If the average person were given the ‘choice’ of taking pain meds or not being able to bathe themselves or feed themselves I have little doubt which they would ‘choose’. If the average person was told you can either take the chemo drugs and steroids or run the risk of your health declining faster and further until you need an oxygen machine to breath, your bones rotting away or your brain being damaged to the point of not being able to speak or swallow, I have little doubt what the average person would ‘chose’. Yes. They would chose the deadly, nasty, toxic, poisonous and unpredictable drugs in the hope of trying to improve their current quality of life with NO idea what the future might hold.
Choices for the autoimmune are like jumping off a cliff in the hope you will find a soft and comfortable landing at the bottom but we jump in hope. Doctors can’t tell you what your odds are because they don’t know. Specialists can’t tell you what the future will hold because they don’t even understand how or why these diseases exist in the first place. They don’t know what side effects, if any, you will experience so they may not even mention them; mine never did. In short we pay them to guess, test and retest. But they don’t have to live with the consequences.
Autoimmune diseases doesn’t get the compassion that cancer sufferers have, even though we may have to have chemo for the rest of our lives. They don’t have the respect that service persons get, even though we fight battles and face the fear every day of our lives. We don’t have the media coverage that Ebola cases got, even though there were less than 100 recorded cases and there are well over a 100 million Autoimmune sufferers worldwide. And we don’t have cures or answers even though Polio, smallpox and tuberculosis have been successfully treated and curable over 50 years ago now and Autoimmune diseases have been around for approximately the same amount of time.
Probably the worst thing about all of this is that in the time I have spent writing this my dear friend Angel has been suffering the most awful, unimaginable pain, and there is nothing that I can do to help her or stop the cruel and thoughtless remarks that she encounters on her long and painful fight.
If writing this saves even one Autoimmune sufferer from one thoughtless remark it will have been worth it… This is my choice.