Tuesday, 5 November 2013
Divide and Conquer: the Abuse of Psychiatric Power and Resisting the Pressure
I have a bone to pick about the dichotomy of surviving schizoaffective disorder, lifelong mental illness and psychiatric treatment, contrasted with the labels in my youngest son’s psychiatric notes, saying “family history of”, “mother’s mother had schizophrenia”, “oldest brother has paranoid schizophrenia”. And about the efforts of psychiatry to separate my family, one from another, as they have forced treatment on us. Because all of us have been through the psychiatric system in some ways there has been strength in numbers. In other ways it has meant the labels have stuck to us, thick and fast, even when recovered. They joined up the dots after I moved my mother to where I live, in Fife, Scotland, in the 1990′s, so that she could spend her last few years under my watchful eye. Her 3 weekly depixol injection gave the game away.
In Scotland the new mental health strategy talks about “common mental health problems”, to differentiate from “severe and enduring mental illness (SEMI)”, folk like me and mine who experience psychosis or altered mind states. We’ve been segregated into the cul-de-sac of SEMI where if you want to recover you have to do it on your own. Some of us got off all the psych drugs by taking charge of our own mental health and defying the diagnoses. Others of us stayed in the system and lived with the resulting physical health issues and limitations due to drug side effects and iatrogenesis. Walking with a stick. Tardive dyskenisia. Sleep problems. Anxiety. Restlessness. Etc.
I had to resist the psychiatric system, its labelling and drugging. It’s always been a matter of principle. I cannot accept what was done to my family in the name of psychiatry. From the 1950′s onwards and the introduction of chlorpromazine, the heyday of ECT and the demise of the asylums, my family have been in and out of the system in every decade. In 1978 the patients were lining up for ECT and I managed to avoid it. By 1984 and my next psychiatric inpatient stay there seemed to be far less of it going on. Then in 2002, my third personal engagement, the mental health act was used to detain me and force me onto risperidone. Which led to psych drug cocktails and “lifelong mental illness” prognosis because they’d put me on lithium and given me a schizoaffective disorder label. I’d resisted the bipolar one.
When I speak now to psychiatrists about my complete recovery and getting off lithium they tend to say that either I’m in “remission” or that I shouldn’t have been on lithium in the first place. The psychiatrist who gave me the schizo diagnosis says it’s now in “perpetuity”. What does it all mean? To me it means that they got it wrong. And if they got it wrong with me then they could have got it/be getting it wrong with other folk too. It stands to reason. I recovered because I didn’t believe or accept the diagnosis or label. It meant I had to resist psychiatric opinion and get well on my own. I’d done it before so knew I could do it again.
I speak to other carers and they don’t all see things as I do, that there’s no such thing as mental illness, that psychiatric diagnoses/labels are subjective opinions, that it’s OK for their family member to resist the label and treatment. I can understand why. It’s far easier for a person in the system if they accept the psych drugs and the labels, even temporarily until they get back out into the community. When they have a better chance of taking back control. However the CTO (community treatment order) ties people in and the CPN (community psychiatric nurse) can be like a watchdog for the system. Especially the SEMI CPNs who can be completely indoctrinated into the lifelong mental illness mantra and exist to keep people medicated.
The psych system really doesn’t like it when carers and mothers side with the family member. Especially when the carer and mother has been psychiatrically labelled herself. The troops gather, the pen gets sharpened, the psychiatric notes are full of condemnation. “difficult and demanding mother” “mother caused psychological harm (even when son was being locked in seclusion room of locked ward with no toilet or water to drink)”. Ironically I raised the initial concerns to statutory agencies and then was targeted in an adult protection investigation report. A psychiatrist and CPN were questioned about my character and behaviour. Fortunately I was deemed to be reasonable in their eyes. Sanity reigned in an otherwise mad situation.
But I’m still very unhappy at being badmouthed, bullied and scapegoated for a failed psychiatric system. Treatment resistant means useless treatment. Without capacity means the right to force treatment on an unwilling patient. Independent advocacy is powerless when it comes to the might of psychiatry. And the mental health act is like a chocolate teapot and gives even more power to the professionals in their subduing of the mentally ill under their “care”. The forensic consultant psychiatrist (RMO – registered medical officer) in the locked ward said to me that patients without capacity don’t require advocacy. Wrong. On two accounts. The patient in question did have capacity and he was entitled to advocacy, knew his rights. Therefore on every occasion that the RMO tried to speak to my son without an advocate present, my son told him to go away and eventually in much stronger terms.
I think that psychiatric staff expect carers and mothers to side with them in the “care” of their family member. As in “daddy knows best”. The pressure to conform is immense. Going against the experts with letters after their name is not an easy option. Added to which the family member and patient could be isolating themselves because of emotional crisis or mental distress. I remember back in 1999 when one of my sons was in a locked psychiatric ward and in great distress. The female psychiatrist seemed a genuine person when she met with me. However recently I found out that she had labelled my son with “hebephrenic schizophrenia”. A millstone round his neck over the years although it didn’t stop him from working full-time and having a full life. However it did mean that when he had to engage again with the system that the label kicked in, along with the psych drugs. A double whammy. I’m really not happy about it and wrote to her to complain.
“Sticks and stones may break your bones but words will never hurt you.” Yes they can in the psychiatric system where words are everything. And nowadays they don’t just remain in psychiatric notes. I had an eye clinic appointment a few years after recovering from “mental illness” and psychiatric treatment, in around 2006. The clinic nurse said to me “I see you’re schizophrenic” or words to that effect. I said “WHAT?” and hotfooted it to my GP to ask what this was about. She said that there wasn’t a box on the database for schizoaffective disorder. I said that was a wrong diagnosis anyway as I had recovered completely, got off all the drugs, got back on with my life. She recommended I see the psychiatrist who had written it. Which I did and he said he’d write a letter to the GP.
However, in 2012, written in the notes of my youngest son who was dehumanisingly treated by the psychiatric system “family history of schizoaffective disorder”. As in … me. Words that stick like glue even when wrong. I phoned the psychiatrist from the office of another psychiatrist who was witnessing my reading of the notes, asking why this was in my son’s notes and a justification for forcing treatment on him and the badmouthing of me. He said he would sort it out. Huh. I knew then that they weren’t going to sort anything out and it would be up to me to rewrite the notes. And so I am now speaking out at any and every opportunity, telling the real story, whether orally or written down, in blogs and Emails. On the street, at meetings, in presentations. There is always an opportunity, in my experience, to tell it how it is. To set the record straight. To take back the power and to have a voice.