Anyone Up For A Game Of Truth And Dare?

One of my favourite Facebook pages is The Nutters Club NZ.  Their mission is to

“to forever change the way people, feel, think, talk and behave in relation to our mental, physical, emotional, spiritual, cultural and sexual well being; and in doing so encourage us all to take ownership of our own health and well being.”

It’s not a bad aim, in my books, and they do it through humour, as well as a television/radio programme fronted by kiwi comedian, Mike King,  seeking to de-stigmatise mental illness.  My only problem is that kiwi media lords give them such late night spots that I often don’t get to see/hear them.  But I love what they are doing on Facebook.

Yesterday I came across a clip on their page, of Stephen Fry and Andy “Electroboy” Berhman briefly discussing Electroconvulsive Treatment (ECT), sometimes called ElectroShock Treatment.

It’s one of those topics that my eyes spring wide when I see it mentioned, and I just can’t help but want to read.  Why?  Because ECT is something that I had, numerous times, over   about eight years.  It’s an important topic worthy of discussion simply because it seems that few have much understanding of it, or of what the long-term consequences are me, and the thousands of others who have had this treatment.

My eyes sprung so wide when I saw this clip, and some comments on The Nutters Club NZ page, that it was worth dropping back in from my ‘vacation’ of ‘baking pies’ (see Blocked).  For your sake, I hope I can make some sense,

You can read about my experience of ECT either in ECT – How It Was For Me or in my book, Infinite Sadness, 2009 which you will find on Scribd.com.

It’s now 10 years since I had my last lot of treatments, at which the psychiatrist administering the treatment sat me down (just after I had woken up from my general anaesthetic) and told me he felt I had received “too much ECT”.

In the state I was in at the time, I was hardly fit to ask what he meant by this.  My mother was with me (she had to drive me home) but knew so little about ECT that she didn’t ask what was meant either.  I never saw that doctor again, nor has any doctor been able to tell me what he meant.  Was I now an over-charged battery?  Had he fried my brain and left it charred?  I don’t know.  I was simply left to live with it.

What troubles me (more) about ECT is the lack of reliable information available.  Since writing about my experience, I have had a number of people ask me whether I thought they should have ECT, as it was being recommended to them.  Obviously I have no medical training and therefore can’t recommend anything.  All I can do is explain my experience. And I am more than happy to do that so that others have more information that what I had to go on.

There simply isn’t enough information available.  At the time anyone is being offered ECT I would suggest that they are probably not in a fit state to be making such a decision.  It’s one of those ‘last ditch efforts’ by doctors who simply don’t know what to do with a patient who they have classed as having treatment resistant depression.

I was ‘offered’ ECT on three occasions in 1995, 2002 and 2003.  On the first of those occasions my (now ex) husband decided for me.  On the other two, I just had to go along with it because there was no one else to decide for me, and there were simply no other options.  I simply had to let them do what they ‘thought best’.

It’s not a very satisfactory situation.  It really comes down to the doctor’s opinion.  And what I’m now wondering is, if those doctors had been the one’s being ‘offered’ ECT, would they take it?  How many doctors would submit themselves to repeated treatments of ECT?

Not only am I concerned about the lack of information, and the hardly ideal situations for making such decisions, I am growing increasingly concerned about how little appears to be known (and publicised) about the long-term effects of ECT.

Whenever I read about so-called long-term effects, it is about the effect on memory in the time following the treatment.  What I’ve often read is that while memory can be affected in the short-term, that in the months following memory will be returned to normal.

That’s coming from health professionals, but what I know from my own experience, and from listening to others who have had ECT, is that it is different for everyone and for some, memory is never returned to normal.  That’s two quite different scenarios.

My own experience is that over three separate courses of treatments my memories of about a year around the courses have gone.  I just don’t remember anything of the year around each course of treatment. That’s a considerable difference to what I have been repeatedly been told by psychiatrists, but then of course they haven’t lived it themselves, have they?  They’re simply going on theory.

I also believe that my cognitive functioning has changed as a result of ECT.  Again, I can’t provide proof but I know that before ECT was even a phrase on my lips I was a highly competent multi-tasker (actually I was employed on the basis of my ability to multi-task).  I had no problem balancing a number of issues in my mind, but now I struggle with more than one. I can’t even have music on while I’m writing now.  I need absolute silence in order to be able to think and write.

I accept that I have no proof that this decline in cognitive functioning is due to the ECT I received, but I can look at my university studies prior to ECT, and that after ECT, and see a difference in how I managed the material I was studying.  It was much more of a struggle after ECT.

One person’s experience does not make it true.  I know what.  That’s why I’m thinking a game of ‘Truth or Dare’ might be good.  I came across a paper by the United States Food And Drug Administration on Research Findings on Memory and Cognitive Impairment in ECT published by PsychCentral.  It read pretty much as I had ever had memory issues explained to me by health professionals.  I’d like to see those dare to put their own brains under repeated treatments of ECT, and see if they say the same thing afterwards.

If they’re not prepared to do this then it’s time that we started listening to those who have actually been through this experience.  What was the real experience?  Rather than the theoretical?

I think it’s really important that ECT is talked about more openly, but also that it is talked about factually.  Let’s not just listen to the professionals, but be open to hearing from those who have undergone ECT.  Let’s really understand not only how it works, but what are its long-term effects.

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2 thoughts on “Anyone Up For A Game Of Truth And Dare?

  1. Back when I was still able to work, but after the breakdown that let me know I was (and had been) incredibly sick, I was able, through my insurance program I had through my job, to see a psychiatrist who was in partnership with one other psychiatrist. I saw this man quite often and my supervisors’ supervisor hated my doctor because he kept me off work for months at a time. This psychiatrist also irritated me because while he seemed caring and professional, he’d tell me one thing and when I’d go back to see him the next time he wouldn’t have written in his notes in my file the same thing he told me. (And he looked at me like I was the crazy one!! HA!!) I, however, kept copious notes in a journal which I updated after every visit.

    Anyway, this man wanted me to have ECT and I didn’t want to because of people I’d seen in one particular hospital where one of my loved ones was dying. Between those zombie-looking people who scared my 20 year old self and “One Flew Over The Cuckoo’s Nest” I was scared to death of shock treatments. (Not to mention one of my favorite movies, but scary to someone back in that time with mental/emotional health issues, “Suddenly Last Summer” with Elizabeth Taylor, Katherine Hepburn and Montgomery Clift.) I refused time and again until finally I was so desperate to get back to normal I was thinking about it. Therefore at my next appointment I asked him how it worked — what did it actually do to the brain that removed depression, since he had misdiagnosed me with severe clinical depression and promised the shock treatments would make me normal again. He frowned, shook his head and stated, “We don’t know how it works or why it works.” Yet during a previous visit as he was urging me to do this, he said if any of his family — wife, children — were as depressed as I was and had such difficulty with medication (he never used the term you mentioned and with which I would later be classified: treatment resistant) he wouldn’t hesitate to give them shock treatments.

    Like you, all that was mentioned as a side-effect was memory problems for a few days prior to and just after the treatment. I also assumed from the word “treatment” and not “treatments” that it meant one time. Later I learned “treatment” meant a series of shocks, depending upon various reasons for each person. Also like you, I later learned from others that they were missing huge chunks of time from their memories — not just during the time surround the treatment(s). In fact oner person couldn’t remember a single thing that happened before the series of shocks she underwent.

    Later, when I had to quit my job, sell my home and give up my normal life not knowing it would never come back, I had no insurance and had to go to a state-run (and paid for) facility. They had a complete turnover one time of all employees and it was in the news who the new director would be, and who became my doctor. It was the partner to my previous psychiatrist. Both men were sanctioned publicly by the state and by the psychiatric association for using way too many ECTs as treatment instead of meds, counseling, etc. It was their first go-to response. The doctor I had seen left town and this doctor was “downgraded” to work for the state. I was surprised they were able to keep their medical licenses. It was such a big deal, there was a four-page spread about it in our newspaper.

    I realize for some people they think, believe and/or swear by ECTs as the only thing that has ever helped them. That’s fine for them. As for me, it still scares the daylights out of me and I will not go there unless I am completely out of my mind and someone else makes that decision for me. The doctor at the state-run facility used me as a guinea pig for all new meds that came out, jerking me off one chemical and immediately putting me on another. It wasn’t until I had a good doctor that I discovered you are to be weaned off one med before starting another. I will tell you that during the time I was seen by this man and used as his chemical guinea pig, I have chunks of memory loss anyway.

    Great post, Cate!! I wish others would follow suit. Carrie Fisher, actress, author, daughter of Debbie Reynolds, is quite open about her ECTs. Maybe one day when I am able to read again, I’ll buy her book. I’ll bet it’s fascinating.

    1. You know what sprung to mind as I was reading this? That psychiatrist said he’d give ECT to his wife or children. I still wonder though, whether he’d go for ECT himself. Was he that confident of it that he would subject himself to it? Hmm.

      I don’t mean to mock ECT because I know that sometimes it saves lives. I just think there needs to be more openness about the long term effects.

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