If you mention ECT - Electroconvulsive Therapy in the psychiatric world, (or indeed to those who are fortunate never to have crossed its path), you are sure to stir up an intense response whether your views are pro, anti or somewhere in between. The images it brings to mind are disturbing and it's very hard to imagine that there is still a place for it in this day and age.
In my day I was no stranger to the ECT department, visiting it well over 150 times. The term "ECT suite" as the department is known always makes me laugh - it sounds like some sort of luxury spa where you go to get pampered! I wish! A spa probably would have had more therapeutic benefit.
You can probably tell from my sarcasm that my own personal experience of it wasn't brilliant. It's something that fills me with extreme terror even now, years after my last treatment. Although I've been told I'm not to receive any more, I'm left with vivid recurring nightmares that it will be forced on me against my will and without an anaesthetic.
If I were to sum up ECT in a few words, they would be "painful, devastating, weird and terrifying". Of course, these are my own words and my own reality, but another person's words might be "life saving, amazing, great and the best thing since sliced bread".
I was once asked if ECT should be banned. It was difficult to answer. You'd probably expect me to answer "Yes" immediately, but somehow I can't.
ECT destroyed my life and I have seen it destroy other lives, but I have also met people who swear by it and where it has very obviously saved their lives with only minimal memory impairment..
Most people who are treated with ECT will get maybe 3-4 courses or less in their lifetime. Somehow I managed to notch up 15 courses. Yeah..yeah, I accept the standard line that I was very ill and no medication had the slightest effect on me and they didn't know what else to do, but what I am angry about is that I was never told of the devastating permanent after-effects the treatment would have. I am angry that it took the doctors 15 courses to realise that ECT didn't really help me that much, then "Oops, sorry. We've given you too much, goodbye".. But what takes the biscuit is that no after-care was offered to help cope with my now defunct brain.
When I did pluck up the courage to complain to my care staff, they dismissed it and I eventually gave up.
Time went on and a few years later I found myself in my GP's office in floods of tears and desperate. I had to fight for it, but eventually I was sent for neuropsychological testing. I wanted the results to be normal - the block may have just been in my head. But the results when I got them were devastating. Part of me was relieved - I knew that something wasn't right but it turned out each area of memory and cognitive function was affected. The figures were scary - some of my results were under the 5th percentile..some even under the 1st percentile..
I was offered help to cope, but all this amounted to was advice to set up text alerts on my phone, and to purchase a white-board. Yeah...really helpful..
I strongly feel that if they provided a treatment which trashed my brain then they should provide the testing and rehabilitation afterwards if it is required.
The damage is such that pretty much all of my childhood is gone. School..University? Mostly gone. The odd hazy shadow still exists, but I couldn't tell you if it actually happened or not.
Day to day life is difficult and exhausting because I no longer have the ability to retain new memories. Everyday things that people take for granted require a huge amount of planning and organization.
I don't feel like a real person because I don't have those memories built up of myself to know who I really am. When I look back through my diaries now, it's like reading about another person. I don't recognise her.
Yes, ECT probably did save my life, but at what cost? There have been many, many times I wish I had died. I feel trapped in a mind which is crippled and what makes it harder to bear is if you saw me going down the street, you would never know. I have no obvious outward signs that anything is wrong..I can carry out a conversation at the bus stop with people I've never met before. I can complain about the British weather as good as the next person..but as you start to probe a bit deeper, you start to notice something is not quite right. You might ask me what I've done this morning..I'd have great difficulty in telling you. You might ask me where I'm going on the bus...oops..What bus am I waiting for?..Why am I at the bus stop in the first place..? Tip of the Iceberg.
They don't tell you all this in the literature.
The battle is ongoing to get a formal diagnosis to access the specialist services that would help with rehabilitation. Knowing the nature of the whole "establishment" I'm unlikely to get far, but I'm determined not to give up without a fight.
If I had one wish to achieve something through this..it would be to raise awareness of the devastating mental and emotional consequences that ECT can have. If I had another couple of wishes? More research in to the after-effects of the treatment..not just a couple of months down the line, but years down the line..Oh, and my final wish would be for ECT doctors to 'practice what they preach' and have a shock or two themselves. To go through that first hand? You can't get any better training than that!
Much more on ECT to come folks!
Kerry.
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