A post on May 31st on davidhealy.org, The Greatest Failure in What Used to be Called Medicine, and the following post on the Spectre of Dissent, triggered two conversations. One was about the appropriateness of the imagery used.
The other was a long conversation initiated by Tim and then developed by Heather about what to do about Akathisia. One of the suggestions was that we have something like a Teeshirt featuring akathisia.
The other issue raised centered on how to get the message about Akathisia over to others. Heather in comments on more recent posts has let it be known that she was about to attend a conference on suicide and wondered what she could say at this that might help. There has been lots of advice to her.
This is what she finally did say:
Reporting back after Suicide Crisis Conference in Gloucester today, 10th September. Managed to stand up and speak on mike Out in front of stage, to appreciative assembled large company about AKATHISIA. I raised it in the section dealing with Trauma in Bereavement. The excellent speaker said that of all the types of bereavement. Suicide was the worst for those left behind as they don’t know, and therefore are likely to endlessly agonise afterwards, over why the loved one left this world.
I ventured, in our case, to differ. I said I wished that HAD been our experience, but that we’d known for a long time that our son intended dying, and why, mainly because of the havoc AKATHISIA played with his mind and body. (I was proudly wearing my AKATHISIA sweatshirt). I explained my frustration about people being told to come forward and share their suicidal feelings, as our son did, and then being told they are attention-seeking and to go for a walk etc. I said we had fought for months to be taken seriously, well aware he intended dying, and were met with complete indifference. He had been shamed and humiliated. I explained about the effects on some people of prescribed medications, and how Big Pharma really did not want this AKATHISIA problem addressed and spread around. So it was up to all of us to pass the word as far reachingly as we can. The audience were in warm agreement, they kindly applauded loudly, and my words ended the conference. Many took our leaflets. Others came and spoke to us and we passed on RxISK information. A really good outcome, we felt.
There seems little point in arguing with others, particularly the authorities, about akathisia, or trying to pit expert talking heads against each other. The bottom line is: Why do you not believe me?
It’s a matter of refusing to engage with or in a game. Fifty years ago in mental health we played a Freudian game. Almost whatever we said to a therapist we’d be told something like its down to difficulties you’re having with your mother. This was a game that had a set of rules. If you are very smart and your therapist particularly dozy you might outwit him but you don’t get anywhere. Even if you do outwit him – you will then be up against the serried ranks of analysts for whom your efforts to show that they are not engaging with your problem is just another manifestation of your neurosis.
In the same way now, doctors and regulators and ministers for health and companies are playing an “evidence-based-game”. They hold the rule book and you can never win. In one way or the other you will be dismissed as an anecdote or neurotic – medically unexplained symptoms – or perhaps even manipulative.
The only position that works is a Lutheran one faced with an all encompassing Catholic worldview – Here I Stand, I can do no other.
The world ultimately can’t work if we can’t and don’t believe each other.