And I think I would say to any health professional that if the patient expresses a, perhaps expresses is the wrong word, well, if they tell them they felt a certain way, that they should acknowledge that and not just dismiss it and saying that, No, you know, that’s not true, that doesn’t happen. Because, well, everybody’s experience is important and should be valued and validated because it is that person’s experience. And you can’t deny somebody that experience. You can’t say, Oh, no, it didn’t happen like that if that’s how they experienced it.

So what other type of things do you feel, sort of haven’t been validated? If you see, are you talking about the longer-term memory effect or more the experience of it at the time?

Well, certainly the memory bit. It’s all coming back to me now. When I got so scared of having it, I can remember them spending ages and ages with me, trying to persuade me to have, to continue with the treatment. And they wouldn’t listen to me and they didn’t understand what I was trying to tell them about how it made me feel. And I, I think, yes, they need to listen more, listen to what people say and not just dismiss them as crazy depressed people who don’t have a voice because they’re depressed.

So we carried on like that for, well, for quite a while until the January of 2001. And then my husband decided that he was going to leave because he couldn’t cope with me and what was going on and the stress of it all. And he, so he left. We were living in a house that was owned by the farmer who he worked for, so I had to move out with [name], my son. And we went to live with my parents and lived with them for about three months until we moved here. My parents very kindly bought me this house to live in and we moved here and weve been here ever since. Yes, after that happened I think, well, for a little while I was, I coped extremely well. And then I suppose it all, and what happened then? I that’s right, I was put on some medication which didn’t really agree with me and made me incredibly anxious and, to the point where I could hardly function, the anxiety was so bad. And the following year after my husband left I took a massive overdose and ended up in the intensive care in [name of town] on, well, nearly dying. And although that obviously was a terrible time and I was in hospital for months recovering from it, which, I mean some people said I shouldn’t have recovered at all really, but I did. And since then it’s been onward and upward. I’ve, you know, slowly, well, probably, you know, two or three steps forward, a step back, but it’s, I’ve gone from strength to strength. I still take quite a lot of medication and, but that seems to keep me just sort of ticking over.

But I think, like I said before, when they, the, at the time when they’re explaining it all to you and you’re going through it, you’re in such a terrible place anyway that it’s not the best time to be having it all explained to you. So I’m not really sure how to get round that, to be honest, because, you know, you don’t really want to be having a conversation about ECT when you’re feeling wonderful. But perhaps you should, you know, if you have a history of depression. And maybe it’s something you should think about when things aren’t so bleak.

Yes, I mean I was quite pleased when somebody told me what was wrong or what they thought was wrong. Because, I don’t know, theres a, I, when you’re experiencing things that aren’t, well, you don’t feel are normal, it’s nice when somebody tells you why that might be happening. So although I, you know, am not a hundred per cent sure whether labels are helpful, having one then was, because I, you know, I knew what was happening then.

And what sort of experiences did it help you make sense of?

Well, I mean when somebody says you’re suffering from depression and anxiety, I mean it, these days it’s easy, you just Google it and find out all the information and all. But we didn’t have the Internet then. And I, I mean I’m sure we must have looked it up in books and things and sort of found out, you know, what it was all about and, and just making sense of how things were and explaining it all. But I mean over the years I’ve had many labels and some have been helpful and some haven’t.

Oh, yes, how much choice. No, I mean it, you know, when you’re offered it you’re not in a good place, you’re severely depressed, and, you know, making any sort of a decision is hard, let alone one that important. And, you know, I mean I’m sure I must have been given the choice. It, I wasn’t under a Section or anything, so I would have been given some choice. But I don’t know what would have happened if I’d said no. They might have come up with some other plan.

But I’m just sort of thinking about, you know, being very severely depressed —

[mhm]

— and having to make these sorts of decisions. Is it possible to explain to me what that feels like and why, you know, making decisions might be so challenging?

I’m not really sure why it is so difficult, but when you are severely depressed, to make a decision is quite hard. Even, you know, a simple decision like, Shall I get up? or, Shall I have coffee or tea? or, What shall I put on today? is, can be, you know, really huge. And, yes, so making a decision about something as big as ECT is, in a way it’s a shame they can’t ask you when you’re well and then you could make an informed decision. But, you know, concentration is hard when you’re depressed, and somebody sitting there next to you trying to explain to you what all this is all about and you can’t concentrate, and, and then they’re saying, you know, Do you want this treatment? And it’s not the right time to be trying to make such, what is actually quite a huge decision, that, you know, that you’re going to go through with this treatment that, you know, is, well, not very nice [laugh].

Can you describe to me the, the process and, and what you felt like?

Like I said, wed trundle over to this other hospital in a taxi, having obviously had no lunch because it was always in the afternoon, and sit around and wait for each person to have their treatment. And then they’d get you to lie on this, well, sort of operating trolley thing. And this is the bit that I a-, actually got to the stage where I couldn’t have any more treatments because I got so scared, but they administer the anaesthetic and then do whatever they do and then you come round and you can’t remember anything [laugh] for a little while. You’ve got a bit of a headache, yes, yes, I can remember having a headache. And then I think when we actually got back to the ward they sort of told you to go and lie down for a while and

And how were you sort of feeling for the rest of the day then?

A bit sort of zonked out. And it, like I said earlier, it definitely does affect your short-term memory. You know, I’d struggle to remember what had happened, you know, that day or the day before. So that’s a bit scary.

Was it just sort of events that you struggled to remember or was it sort of names for things?

No, not names for things. I could remember that sort of thing. But it, more events, things that had happened in the last few days.

And how, how were you sort of feeling for the rest of the day then?

A bit sort of zonked out. And it, like I said earlier, it definitely does affect your short-term memory. You know, I’d struggle to remember what had happened, you know, that day or the day before. So that’s a bit scary.

Was it just sort of events that you struggled to remember or was it sort of names for things?

No, not names for things. I could remember that sort of thing. But it, more events, things that had happened in the last few days.

And what was the emotional effect of that?

Of, of having memory loss?

[mhm]

I don’t really remember, to be honest. I think I’ve felt more emotions about the long-term memory, memory problems that I’ve had, which I attribute to ECT, although doctors will tell you that’s not possible. Because, you know, big chunks of my life are now missing, some of which were probably important or worth remembering [laugh]. So I feel quite sad about that, you know, round when my son was born and, you know, theres big bits of it I don’t remember, you know. He was young and I don’t remember some of his milestones.

It’s quite an odd question to ask in a, a way. Sort of what, how do you know that you can’t remember as the whole?

Well, because people tell me things, people will talk about things and I’ll say, Well, I don’t remember that. You know, not disputing that it happened but just not remembering that it, either not remembering it at all or, well, yes, not remembering it at all as…

And were these sort of whole months at a time or just small events?

It would be weeks, weeks that I wouldn’t remember or, you know, certain events that happened. And I, and people would say, Oh, you remember so-and so? and I would say, and I don’t think it’s just because I’m getting older, because this was happening when I was in my 30s, you know, 30s, late 30s and, you know, dementia hadn’t set in then [laugh]. But, yes, so that does bring some sadness, to be honest, and a bit of frustration because, you know, you don’t like to forget things.

I remember you saying earlier on in the interview that things have changed quite a lot during your lifetime and that when you went to college there wasn’t a lot of understanding. You were saying people just thought you were strange

Yes.

in a sense. And that time that you got thrown out of college and

I did, I did. I started my nursery nursing course at, in [name of town] and I don’t remember a lot about what happened but apparently my behaviour was strange. Well, I don’t know what it was because I don’t remember doing anything strange, but it must have been strange. And I made an agreement with the college that I would leave and take time off and get some help and get better and go back and start the course again. Which I agreed to. And that was in about the Easter, anyway before the summer term started, or would it have been September? Anyway, some time we had a letter from the college saying that because of the way I behaved, I’m not even sure if they said that much, but basically the gist of it was that they, I was never to darken their doors again, I wasn’t allowed to speak to any of the people on my course, and don’t ever come back. Which was a bit stunning really. And my parents said that sort of, I think they complained or something to the local education authority and they were going to have some sort of tribunal thing about it. But in the meantime I applied to do the course, the nursing course at another college, in [name of town], and before we got to go to the tribunal I got a place in [name of town]. And so we never went to the tribunal and I never found out what it was that I’d done that was so dreadful. Which I regret because I would like to have known why they, you know, came to that decision, because it seemed very unfair to me. I would never have left if I’d thought they were going to, you know, tell me not to ever come back. But I, you know, like I said, I don’t think thing-, you know, back then, were talking about the early 80s, you know, I don’t think people understood as much. I mean they don’t understand much now but they understood even less then, and the stigma around it all. It was probably to do with stigma actually, thinking about it. They didn’t want some mad woman coming.