Sunday, 21 September 2014

Bipolar Disorder from where I’m standing: a Mother speaks out (a piece written for Bipolar Scotland mag)

[Here is a piece I wrote for the Bipolar Scotland (BPS) magazine 'On the Level'.  I wasn't asked to submit it, rather I felt compelled to write something, from my own personal experience, as I'm a member of BPS, get their newsletter sent to me, and I never see anything in it that represents my point of view.

I Emailed it to the two main workers at Bipolar Scotland on 9 August, got no response, so sent it again on 28 August, still no answer.  I have to therefore assume it's a No.]

Bipolar Disorder from where I’m standing: a Mother speaks out 

In 2002 the psychiatrist wanted to give me a bipolar diagnosis at an appointment and I remember debating with him, although not my usual assertive voice since I was on risperidone and venlafaxine at the time.  Saying that I didn’t have a bipolar illness as my moods were flat because of the medication or psychiatric drugs as I call them. 

The meetings with the psychiatrist back then seemed to consist of him asking “Are you tearful?” and my response “No I am flat as a pancake” or something in that vein.  For the drugs demotivated me, took away my sense of humour and singing voice.  I used to say to my husband that for him it must have been like the film “I walked with a zombie”. 

For I’ve never liked swallowing psych drugs after experiencing two earlier puerperal (postpartum) psychoses in 1978 and 1984, after sons 2 and 3, and being made to take chlorpromazine.  Fortunately I got off the drug within the year and got back on with my life.  I eventually did the same in 2003/4, getting off all the medication, including lithium which I’d been given to “augment” the antidepressant, although it didn’t work.

Because I’d refused the bipolar label I thought it meant I was disorder free and had nothing written in my notes.  However I found out this wasn’t the case in around 2006 when going for an eye clinic appointment at my local hospital and the nurse said to me “I see you’re schizophrenic” or something similar.  I’d been recovered and off all drugs for a couple of years, was back working and back to myself.  What was going on?

It felt like a swear word, to be honest, when the nurse said this, and I was taken aback.  I hotfooted it to my GP to ask about the label in my notes.  She said there wasn’t a box in their database for schizoaffective disorder.  I said I didn’t have that either and could she remove it?  She recommended I see the psychiatrist about it.  Which I did, dropping by later that day and catching him in his office.  He said he’d write a letter to the GP.  But the label still sits in my notes to this day, “in perpetuity”.

Psychoses are normal in my family and 8 of my family, from my mother and father, my 2 sisters to me and my 3 sons, have all experienced altered mind states and psychiatric inpatient treatment.  Which means we have all been diagnosed and labelled with a disorder.  Presently two of my sons have bipolar disorder diagnoses although one of them has had a few other labels on route.  My oldest son made a complete recovery after a year on psych drugs in 1996 and hasn’t looked back.

My two younger sons have both been in and out of the psychiatric system on a few occasions, receiving different psychiatric medications and I think the bipolar disorder label is an accurate description of their condition.  For my take on it is that the psychiatric drug treatment has affected their moods and made them more sensitive to life situations and other stimuli.  They have been disabled by the treatment.  One of them still takes medication, the other doesn’t. 

I do get annoyed with psychiatry for only having drugs in their toolbox for working with people in psychoses or altered mind states.  I have always resisted the antipsychotics (they call it non-compliant, I call it non-conformist) because I knew they would depress me and they did.  I don’t like to be depressed and my natural state is upbeat and positive, since childhood.  However my resistance was futile and I was made to take the drugs, by injection then orally.  But I was able to taper them under my own steam, against the advice of psychiatrists, and make a full recovery after each episode. 

Therefore I have come to terms with the bipolar disorder label although I don’t believe the condition is due to a person’s “mental illness”, another psychiatric construct to my mind.  As I see it if the drugs don’t work then the drugs don’t work.  It’s not the person who is “treatment resistant” but the treatment that is useless. 

Let’s take our critical gaze away from the person and focus it on the system.  That’s what I do as a writer, activist and campaigner, from the psychiatric survivor perspective.  The system includes psychiatry, government and the agencies funded by the state.  And if the system has disabled its members because the treatment doesn’t work then the system is liable for looking after these members.  It stands to reason and makes sense. 

It’s why I am very annoyed about the targeting of people on welfare benefits.  The mental health recovery agenda, some say hijacked by government, was the reason I got involved in Scotland’s mental health world in 2008, when I set up Peer Support Fife.  I believed the PS agenda was a civil rights movement that would shift the paradigm and redistribute power.  I’d been a community development worker since 1980 so knew that it was possible.   The reality has been somewhat different and led to my shift in focus.

I now find myself in the dual role of being an unpaid carer and an activist.  My lived experience of mental health difficulties and psychiatric treatment means that my sons call me in to advocate for them at clinical meetings or other situations where my support is a strength to them.  They call me the “big guns”.  I take it as a compliment. 

I have advocated for many family members over the years since 1970, aged 17, and visiting my mother in a locked psychiatric ward.  I have also worked in jobs where I advocated for people with disabilities, including in 2001 a man in a forensic psychiatric ward who avoided being transferred to the State Hospital.  So speaking out on behalf of others and standing with them as they speak out has been a big part of my life.  I won’t be stopping now and wouldn’t want to. 

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