Best to admit it straight away. This post is written in anger and as a reaction to one of those infamous, unthinking comments the chronically ill receive on a regular basis. I normally hover half an inch or so above unthinking comments. Some, perhaps most, of them are not meant to hurt or cause offence. People utter them because they want to express concern. I would like to think of myself as someone who has bigger fish to fry than grow upset about every well-meaning person who makes a clumsy comment.
On the odd occasion even the most well meaning comment can hit hard and hurts more than usual. I have just spent a sleepless night because of a question I received last night from a relative who I had not been in touch with for over three decades and with whom I have reconnected over many emails in the past few months. She herself was shockingly ill sixteen years ago and her recovery from cancer was not a success story in that she has become chronically ill herself and requires immune therapy on a regular basis. She is no stranger to pain and long-term suffering. The first few weeks of reconnecting with her were like a breath of fresh air. She was the first relative to ever ask me intelligent, well-informed, sensitive questions. Soon, we started to tell each other anecdotes and I happily gave her my unreserved support because she, too, had been at the receiving end of much abuse from some members of the medical profession (which seems inevitable for some sad reason). At her request, I provided her with many informative links to research studies on ME and we did discuss the political nature of chronic illness, underfunding and lack of care for those too ill to actively participate in society, i.e. by way of visibly, physically appearing because they are too ill to leave their homes.
For some weeks we did not communicate as we both had to take a break owing to ill health. Yesterday she wrote to me to tell me some good family news. Then, out of the blue, came the question ‘Claudia, why are you so withdrawn? What is wrong with you?’. I stared and stared at my screen, not fathoming what I was reading. After a moment, I looked again, surely there must be a mistake? There wasn’t. I forced myself to read on and it turned out that she felt I had given up on myself. I had not tried hard enough. She wanted to encourage me to seek alternative therapies; surely there must be something that could help me out of my ‘shitty’ situation.
As I said initially, most of these comments are uttered because people want to show something akin to empathy, solidarity, or they simply want to express that they care. But this time, in spite of my having bigger fish to fry, I cannot simply move on and forget about these comments. They reverberate for a number of reasons, which include:
- It is insulting to suggest to chronically ill sufferers they have not done everything in their power to get better.
- It is insulting to assume people put themselves through the education system at considerable cost and effort, to then not want to make use of their degrees.
- It is insulting to assume people prefer being stuck in instead of living life to the full.
- It is insulting to suggest there are alternative therapies available that sufferers are not ‘open-minded’ about when all they do is protect themselves from quackery and unscientific, unsafe methods of ‘treatment’ (almost every long-term ill person will have half a dozen stories to tell of money squandered in desperation on snake oil cures that, surprise surprise, did not have any effect).
- It is insulting to suggest someone with a neurological illness themselves find a cure for a complex condition that the best researchers in the world have not managed to discover.
- It is insulting to scapegoat sufferers for the disgraceful underfunding of research in a specific field.
- It is insulting not to believe in what I say when what I have said is based on science, knowledge and many years of effort and experience. I have neither the time or energy to waste informing those who seem to want to learn initially but then revert to square one.
- It is insulting to express an uninformed opinion when not contributed towards biomedical research or in any other way helping towards genuine change for the better.
- Victim-blaming, no matter how much it is expressed as concern for the ill, is never acceptable.
I could go on but I will stop there. As I said, this is a post written in anger. Anger is important and can be productive from time to time. It can serve as a catalyst for change. Maybe someone will read this blog post who has not heard it all before (I am hardly the first to express anger or the first to write a list of things not to say to a chronically ill person, Toni Bernhard and many others have done so, brilliantly). But there is always someone out there who has not had a revelatory moment, who is blissfully unaware of the hurt their seemingly innocuous and well-intended comments can cause. Until we are blessed with genuinely effective treatment and recognition by the establishment (that includes no longer being smeared and maligned by so-called health and other journalists) there is very little hope of experiencing a modicum of dignity. Hardly a day goes by without a new slight having to be processed and countered. This is no way to live and the last thing we need is an otherwise lovely, long-lost relative asking us why we have given up on ourselves.
Thank you for reading. Look after yourselves and make use of that anger occassionally.