The Nutters Club NZ – Infinite Sadness… or hope?

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.