ECT – How It Was For Me

CAUTION: This post contains one brief mention of self harm which may be triggering.

 

Image from Wikipedia

My earliest memories that psychiatric treatment of any sort existed was from English classes at high school.  Firstly ‘One Flew Over The Cuckoo’s Nest’ by Ken Kesey and then perhaps creating a more lasting impression because it was based in New Zealand was Janet Frame‘s autobiographical trilogy of ‘To The Is-land’ ‘An Angel At My Table’ and ‘The Envoy From Mirror City’.  These books were later made into the film ‘An Angel At My Table’ in 1990.

These books, and later their movies gave horrific accounts of psychiatric treatment from the past, including details of Electroconvulsive Treatment (ECT).  At the time I had no diagnosable psychiatric illness but the mere thought of it made a lasting impact on me.  I never once stopped to think I might have to undergo the same treatment one day but it left me with a lasting fascination of mental illness.  One of the most horrific scenes in my eyes was the description of ECT, without general anaesthetic and without muscle relaxant, as it was done in those days.

In 1995 I agreed to undergo a series of ECT treatments.  I was very badly depressed, had been for 18 months and my only thoughts were of killing myself.  I had been on a variety of anti-depressant and mood stabiliser drugs, and nothing had worked.  My doctors were stuck.  My husband was desperate for his wife back.  I was at a point where I really didn’t care anymore.  I was admitted to a nearby private psychiatric hospital for the treatment.

The following is an excerpt from my book (Infinite Sadness, 2009) which outlines my experience:

“Following that first ECT treatment the day after I was admitted, I had about eight more treatments,
every second or third day. 
My memory was definitely failing.  I couldn’t remember one day from the next.  Nothing seemed to stay in my mind. Even events before the treatments had gone from my mind.  I felt so stupid.
It was like everything was gone.   Although it was now February/March, I was writing September as the date.
Visitors came and went but I couldn’t remember them being there let alone what we had talked about.  I was in a daze; I had no idea what was happening.  The only thing I did know was that I didn’t like what was being done to me.” (p.94/5)”

At the end of that my psychiatrist declared that I had wrecked his career because I was the first patient he’d had who didn’t respond.  It had failed, and I went on being treated by a variety of doctors and hospitals in the years that followed.  I chose not to see that particular doctor again (unsurprisingly I was just well enough to not appreciate his statement about his career).

In 2001 I reluctantly agreed to try again at a different hospital and a different doctor.  Again I was desperate, clinging onto life only just.  I just had sufficient will to live to agree to treatment (but only for my cat).

“Several weeks later I was admitted again, this time after I had carved the words ‘I hate me’ into my stomach with a craft knife.  I was given the option of more medication or another course of ECT.  I reluctantly chose the ECT but didn’t hold out much hope.  “I wish there could be a guarantee that ECT would make a difference.  I wish for many things, but what I don’t wish for is more of the same.  I’m fed up with this …  I’m fed up with not being able to live.  I’m fed up with trying new treatments but nothing actually making a sustained difference.  I am just so tired of all of this.” 

I had six ECT treatments in late 2001.  I knew there would be headaches; I knew there would be memory loss.  What I didn’t expect was that I would regularly wet myself when I had the treatments.  This hadn’t happened the first time, although maybe I just didn’t remember.  It was apparently a result of the muscle relaxant used.  I would simply have to walk back to the ward (from the ECT Treatment Room in the geriatric ward) with wet jeans.  Just one more indignity to bear.  I wasn’t even alert enough to care and no one was going to care for me.” (p.164/5)

This time it worked!  I wanted to live again… for me, not just for the cat.  I could start to take an interest in things around me (even if it was only on the ward to start with).  It was such a relief, I didn’t care about all the side effects that had struck me.  Even the constant headaches didn’t worry me anymore because I had my life back!  And I really did.  I was discharged from hospital and was able to plan and make some changes in my life for the better, including shifting to Christchurch where I now live in order to get more support from family.

Unfortunately it didn’t last and in 2003 I underwent more ECT treatments, this time as an outpatient.  I had 12 treatments this time, before it was concluded it wasn’t working this time and they really felt I had been given too much ECT.  I try not to think about what that meant but it was still worth a try.  The effects were the same.  Many headaches followed each treatment and my memory was quickly lost.  It was very hard doing this by outpatient and while I didn’t want nor did I need to be in hospital, I’m not sure that I would recommend it this way.  You need a lot of support both during and after the treatments.

Image from madedition.com

The thing about ECT is that no one talks about it.  It’s all hushed up.  It’s bad enough to talk about mental illness but to talk of ECT and experiences of this incredible treatment that still no one really understands?  No.  We keep quiet.  That’s why I felt drawn to write about my experience.  I’m one of those people that wants to read all about what I experience and in the days before blogs it was hard.  There still isn’t much written about ECT and especially about personal experience.  I have a friend who is currently undergoing ECT treatment and I was struck with how little information there was for her and for her family and friends.  People need to know what this is all about… and we need to be talking about it.

Image from cmap.ihmc.us

I had three series of treatments but only one series worked.  For me it also had lasting effects. I have to say that even now, years later, my memory is hazy.  I really can’t remember much of about a year surrounding each series of treatments.  In 1995 (the first round) I had a husband to be my memory but by the time the second and third rounds happened my marriage was over and I was on my own.  I had no one to remember for me.  I was told each time that my memory would be affected for the time the treatments took place, but it was much more than that for me.  I need to point out that for each person the impact on memory is different, so if you’re contemplating this all I can say is it hopefully won’t be like that for you.

I was also told that the time around my treatments was a bad time for me and so I wouldn’t want the memories even if I could have them.  That seemed fine at the time but in hindsight, it does matter to me.  There is basically three years of my life I can’t remember.  Add to that the hazy memory caused by various medications I was on, a lot of this is really all a big blur.  To be honest, the only reason I can write about my experiences is that at the time, I wrote as a way to deal with what was happening.  It’s only because I have that recorded I can give you any clear idea of my treatment.

So…

the question on your lips maybe would I do it again?  And to be honest I don’t know.  There are costs of all sorts associated, some which I still carry.  But each time I was desperately ill and close to death.  The second series (that worked) I would do again.  Sure, if someone can guarantee it will work then I would definitely do it.  The problem is no one can give me that guarantee.  And just like my friend doesn’t know if her treatment will work, it is a guessing game.  When you get to a stage where the doctors are recommending ECT, you’ve already tried everything else.  There really is no choice.  You just have to hope.  Because there is little else to hold onto.  And I hope for my friend that her treatment works, and that her memory damage is minimal.

“…in a world I’d never known among people whose existence I never thought possible,
became for me a concentrated course in the horrors of insanity and the dwelling-place
of those judged insane, separating me forever from the former
acceptable realities and assurances of everyday life.”

Janet Frame, An Angel At My Table

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18 thoughts on “ECT – How It Was For Me

  1. Pingback: ElectroConvulsive Therapy “turns down overactive connection”… « Mental Health Writers' Guild

  2. I hate what you went through, but I thank you for sharing! The more of us who step forward and share…the better treatment will become and better educated decisions can be made!

  3. Thank you for this. Your honesty. I’ve been wondering about the possible benefits and drawbacks of ECT in treating long-term depression. I recently read Carrie Fisher’s “Freakaholic,” in which she details her own experiences with ECT. For her, the advantages seems to have outweighed the disadvantages. But she also did a lot of backpedaling in regards to memory loss, first downplaying the severity of it, but later seeming to indicate it had sorely affected her both cognitively and in terms of recall. You’ve illustrated the side-effects in a clearer, more straightforward manner — and I will definitely try to track down your book so I can learn more about your experience.

    1. Thanks Jessica. It’s hard to balance of advantages/disadvantages when you can’t remember. I know I couldnt’ remember what I was like before I had the treatment so had no idea whether things had improved. That said, I kept journals right the way through that gave me some idea. If you want to read my book the best way to access it now is on Scribd.com. It’s almost out of print for hard copies. http://www.scribd.com/doc/76872108/Infinite-Sadness. Cate

      1. Thanks for the link, Cate. I look forward to reading it, as I really soak up stories from “the front-lines,” so to speak. I think it’s wonderful that you have shared your story in this way. More of us need to.

      2. No problem. I hope you find it helpful. I’d say enjoy the reading but to be honest it’s not the sort that you enjoy. I like to read that sort of stuff too, that’s one reason why I wrote it and made it freely available.

      3. Thanks. I’m like you in that I like to read such stories. It’s the only way to find out what really happens. I won’t say happy reading because it’s not that kind of book but I hope you get something out of it. 🙂

  4. I just posted about ECT on my own blog but having never experienced the procedure myself I couldn’t provide the amazing insight you have! I was given this link after one of my followers read my post and I want to thank you for being so open about a treatment that is very stigmatized within an already stigmatized mental health system!

    1. Thank you. I always appreciate feedback and am glad you found me. Yes, it is very stigmatised and I guess that’s why I wrote my post. You might be interested that there is a new book on ECT coming out later this year. I know because I have contributed to it. You may have seen the blog Bipolar Burble, http://natashatracy.com/

      1. Yes I was looking at that blog while trying to find the blog I still can’t find!

        I would love to read this book! I think we could also use some education on ECT and personal experience is something I hold in very high regard!

  5. Pingback: Intolerance | Infinite Sadness… or hope?

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