In the past, people with serious mental health problems were often expected not to recover. Attitudes are changing, and many charities and health services now promote the idea that ‘recovery’ is possible, no matter what problems people are facing, and regardless of whether others believe in the approach or not. Today, people with mental health problems have different ideas about what recovery means to them, and if recovery can be achieved. This summary is about what recovery meant to people we interviewed and how they managed their mental illness.
For those who have experienced severe mental health problems, recovery can be long and complex. Some people we spoke to who had been unwell for a long time, still did not feel they were getting any better. Others did notice improvements, but the word “recovery” was not always favoured, some liked the idea of “journey” better. When some people talked about recovery they meant no longer having symptoms – such as suicidal thoughts, or no longer hearing voices or having unusual beliefs that others do not hold. However, for other people it meant being able to live a full and meaningful life whilst still experiencing mental health difficulties.
David Y thinks recovery is different for everybody and it isn’t just about going back to work but it is about being able to live a useful life.
David Y thinks recovery is different for everybody and it isn’t just about going back to work but it is about being able to live a useful life.
Age at interview: 52
Sex: Male
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Recovery, recovery is to be able to, to live a life that is easy for you. If you views recovery as, when you’ve recovered you’ll be working, that is how Government looks at recovery, recovery is to be able to live a life that you can do and it’s different for everybody. For some yes its working, for others it might not be work, be paid employment it might be voluntary, you know, employment, or for some it’s just about working and living at home.
To be able to get up in the morning, that’s recovery for somebody, it’s not all about going into paid employment to the end of the day that’s not what recovery’s about, it’s about being able to do things so that you can live a useful life for yourself.
ECT and medication often played a part in people's recovery. ECT played an important part for some and you can read more about that here: ‘How Effective did people find ECT’. Although some of the people we talked to no longer took any medication at all, many people spoke about how medication played a role in their recovery (see ‘
Medication for Mental Health Conditions: effectiveness and side effects'). Although ECT had helped get him better, Sunil felt that it was his mood stabiliser - carbamazepine - that helped him stay well for 18 years. People often wanted to lessen the amount of medication they were taking over time as part of their recovery. The advice here was to do so with support and to ensure you put other things in place (see ‘
Support networks’).
Catherine Y gradually improved on medication, although she gained weight. With help from a charity she started running. She took a course with the Open University and now works as a support worker.
Catherine Y gradually improved on medication, although she gained weight. With help from a charity she started running. She took a course with the Open University and now works as a support worker.
Age at interview: 41
Sex: Female
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And gradually things start to, started to improve on the new medication, but the downside to that was a huge amount of weight gain. But I think, in kind of thinking about weight gain versus possible brain damage, it was like, “Well, that’s okay.” And after that, that was kind of ‘98 to 2000, I had a few kind of wobbly patches with admissions to hospital and a bit of medication changes. But then I started to, I think after my last admission in 2000 I felt I never really wanted to go back to that hospital again. I just hated the environment. I didn’t think it was supportive and I didn’t think it was for me. So I knew that I had to be part of making changes if I was going to get better. And I got a support worker from a mental health charity and I started exercising and running. I started to do charity runs, ended up training for a half-marathon and did a couple of 10Ks, 5Ks, and started Open Uni course. And all things, that was kind of over a period of four or five years that that kind of process, that whole process took. And actually the, although it feels as though that’s a long time, I think it, in terms of how long I’d been unwell I think it had to take that long to actually reverse everything that I’d kind of been through. And I felt so much better. And then in 20-, about 2006 I thought about starting some sessional relief work as a support worker. So I did, I worked as a support worker, support assistant, and I did mental health advocacy training, and continued with Open Uni. And just all these things combined with the support of the charity where I’d had a support worker, just things start to, started to improve.
What people meant by recovery
When talking about recovery, the people we spoke to mentioned the importance of managing their health and wellbeing. People talked about becoming more confident and being kinder to themselves; doing things they enjoyed such as walking in parks and holidaying. Living a life as independently from mental health services as possible; returning to work, education or volunteering to keep active and give back to others; finding a nice place to live; being able to participate in family life and/or other social activities.
Tania felt that, as a family, they were no longer lurching from crisis to crisis. She worked hard at maintaining her health.
Tania felt that, as a family, they were no longer lurching from crisis to crisis. She worked hard at maintaining her health.
Age at interview: 41
Sex: Female
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And it hasn’t, it’s sort of, you know, its eight, nine years, I’ve returned to, you know, returned to myself and I feel like I’m, you know, I feel like me and my family, we, rather than lurching from crisis to crisis, I feel like we’re having a proper life and I can be a good Mum to my daughter and you know, we have we have stability and I mean I still work really hard at maintaining my health, you know, the drugs don’t help me, so I have to have my own strategy, which is mainly exercise and I now use self-hypnosis rather than meditation. And I’m very careful not to try and overdo things. But you know, having said that, I’ve gone back to work.
People said there wasn’t a single moment when recovery occurred: real change is always slow and gradual. Steve described his wife initially having fewer suicidal thoughts and a “calm light-headedness” and then as her memory came back she returned to her normal self without the depression. Nevertheless, looking back, some did notice a turning point. A few people mentioned a specific moment after leaving hospital when they felt they began to recover.
Matt tells the story of how his wife suddenly relaxed at the end of the course of ECT and it was the beginning of a slow recovery.
Matt tells the story of how his wife suddenly relaxed at the end of the course of ECT and it was the beginning of a slow recovery.
Age at interview: 36
Sex: Male
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So we had this trip, I mean not far, we went 20 miles down the road and stayed in a cabin that some friends lent us for the weekend, and the build up to going was fraught and really tense and there were lots of arguments about how we were going to get there and when we were going to go, and what we were going to take and [name of wife] was getting very anxious and frustrated about it.
And then just really suddenly, it was really strange, I think the day before, the day before that last ECT treatment, she kind of suddenly relaxed about all the arrangements and we just settled on what we were doing and then we went, and the journey there was fine, and I remember waking up the next day, after we got there, and you know, the kids woke up really early. As I said the kids were three and five by then, and so we were on holiday and so they woke up really early and came to our bed and you know, [name of wife] was just laughing about stuff they were doing and I think they were tickling her, or she was tickling them and you know, she was just in a really, really good mood.
And they went and played outside and she got up and made a cup of tea and there was just something, it was like something had switched overnight. It was really incredible, really incredible. And… and after that, I mean that was. I think it took me a couple of weeks to realise that that was only the very beginning of a very slow recovery and you know, kind of in the months after that, every few months would realise that [name of wife] was a bit better than she was, and I kept thinking that she’d recovered and then realising that she was still recovering. And it probably… it probably took a year and a half after that in total. But that, just that overnight away at that cabin something really clicked and, and again it’s really hard to measure whether, whether that was because of the ECT or whether, because the ECT had finished at some level, at some subconscious level she kind of had to decide there’s nothing left, there aren’t any treatments left and this, you know, just have to get on with it.
And she said, I don’t remember this, but she said since that one of the consultants had talked about lithium and that she was so scared of the idea of lithium that she had to kind of make herself recover. So there might have been some of that going on.
But the way, judging by the way, during that first course of treatments that she’d picked up, you know, kind of step-by-step, it’s really hard to think that it wasn’t connected with her recovery. And, I think, I think we both now think of ECT as being the thing that kick started her recovery, very much so.
Recovery often didn’t happen in a straight line and people experienced highs and lows along the way. Some people hadn’t been acutely unwell for some time, but had what Suzanne called “blips”, where they saw familiar warning signs that they might be at risk of becoming unwell, such as not sleeping or starting to feel low.
Although at first recovery might just mean getting through a bout of severe depression or suicidal feelings, over time it took on new meanings. Sometime after a crisis was over, people found themselves faced with new challenges, like anxiety over managing serious money issues, or coming to terms with a difficult past. Helen found she could only move on when she wasn’t haunted by the past. Some people, like Sue, who had not had a good experience of either ECT or the mental health system, felt that they actually needed to recover from the effects of being in mental health services.
Until she began maintenance ECT Tania describes being very depleted and having a low immune system because of the drugs and lack of sleep. An illness like flu could trigger another episode of mental illness.
Until she began maintenance ECT Tania describes being very depleted and having a low immune system because of the drugs and lack of sleep. An illness like flu could trigger another episode of mental illness.
Age at interview: 41
Sex: Female
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I was so, I mean I was so vulnerable because I’d been ill for such a long period of time, and hadn’t really slept for you know, three or four years and I was, my immune system was damaged by all the side effects of the drugs and things. So I couldn’t get better completely and I didn’t have a maintenance strategy. So you know, I came out of hospital. I was better from the acute symptoms, but you know, it, for me a lot of the time the thing that precipitates an episode will be physical, will be physical illness or something like that. And because my immune system has really crashed, I got ill. I kept getting ill in the winter months. I’d get flu or something and then it would all happen again.
So for a couple of, a couple of winters, I had these episodes following flu or a viral infection and I would end up back in hospital. I’d have the ECT treatment and it, once again it worked like magic, each time. It was great. But we couldn’t find a way of stopping myself from relapsing and it was getting progressively more dangerous, because, you know, there’s only so many times you have a failed suicide attempt before one, you know, you work out what’s going, and one came very, very close. Very close.
Techniques for stress reduction and self-help
The people we spoke to had often learnt techniques to help them feel well and keep them on an “even keel”. For some this meant pacing themselves better, spending time on hobbies and with friends, going for walks, exercising more, and just managing their lives in a different way. Others spoke about practicing mindfulness, eating a special diet, trying to challenge negative thoughts (through meditation, hypnosis and talking therapies) or having treatments such as Reiki or massage. Yvonne said she didn’t like the word recovery but said “if you can [have] total insight into your illness, I think you’re going to get on a lot better and certainly move forward in a positive way”. Cathy said recovery for her was “being happy with the way things are, even if they may not be perfect”. Enid tried to make the most of everyday and not worry about the future: “just live in the moment”. She went to church, went out with friends, enjoyed music and found that her dog was great company. Many people spoke about the importance of being able to sleep well. Dafydd thought that establishing a regular sleeping pattern was key to his wife’s recovery.
Yvonne says she can still become quite ill quite quickly if she gets very stressed. Having a support network who tell her when she’s doing too much, helps her manage her illness.
Yvonne says she can still become quite ill quite quickly if she gets very stressed. Having a support network who tell her when she’s doing too much, helps her manage her illness.
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Nowadays I still get ill if I’m not careful about what I’m doing. If I work too hard, too many hours, get too stressed. Then I can become quite ill, quite quickly, but I have an amazing support network around me now. Which I didn’t have years ago.
My husband, he reads me very well and he knows before I do that I’m becoming ill. My daughter whose 18 can read me very well. And I’ve got the Haven, like a drop in where the staff have known me since 1993, so they know, you know, they see me most days and they know when I’m becoming ill and are able to say to me, you know, I think that you should may be slow down in your work or I think that you’re becoming stressed and I trust the staff, the same as I trust my husband, and my daughter, because I don’t always see signs, and I’m usually quite poorly before I realise I’m poorly.
Suzanne’s friend have her a healing treatment, like Reiki, which she felt kept her well at times where she was “teetering on the edge of becoming ill again”.
Suzanne’s friend have her a healing treatment, like Reiki, which she felt kept her well at times where she was “teetering on the edge of becoming ill again”.
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And how have you manage your well-being over all?
Yes. Yes. There’s one major thing that I left out I’ve a friend who is trained as a healer and she does healing which is a bit like Reiki and she’s done sessions with me for the past couple of years and I’ve found that to be tremendously helpful and it enables you to tune into your own kind of inner wisdom and if you have a worry that’s dominating your thoughts it kind of helps you resolve it and that’s been a really powerful tool for me. And that’s kind of kept me well on occasions when I was not, when I was teetering on the edge of becoming ill again.
Some people found their religious beliefs or spirituality played a special role in their recovery. Tracy said her faith gives her self-worth. Suzanne describes waking up after her last ECT treatment and hearing her late grandfather’s voice. She calls it the “lovely spiritual aspect to [her] recovery”. Albert feels he was able to give up drugs 14 years ago because of an experience he had doing yoga which changed his outlook on life: he said “it was as if I had woken up to the fact that I was only a tiny grain of sand on a rock hurtling through space”.
Helen found the church and her faith taught her “how to balance things out”.
Helen found the church and her faith taught her “how to balance things out”.
Age at interview: 60
Sex: Female
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But for all people, if you’ve survived something like that you, you’re looking for answers. You know that spiritually and psychologically you need answers, you need to come to terms somehow and find a way of coming to terms with what had happened to you. And so I turned to religion, which a lot of people do. And it did work, r-, yes, it did really. I found that with dyslectic, for example, I’d read my Bible, I’d study my Bible and I’d read commentaries that taught you how to balance things out with extremes and going down the middle road all the time. And I learnt you had to keep learning to forgive and you had to, And I found of course people who would give me time and be helpful. They loved a sinner that they could sort of, you know [laugh]. They didn’t want sick, normal people. They loved, the sicker and the more mentally ill you were the more they liked it really. And so, yes, for about twenty-odd years I did turn to religion. And I can see now that was quite extreme and quite cranky in lots of ways. But it did work, it did work. It did teach me lots of valuable lessons like forgiveness is a reaction, it’s a muscle that you’ve got to keep exercising and learn to do. Even if it’s only skin deep, you’ve still got to go back to those fundamental issues. And a lot of the Bible teaching is, its fundamental good psychology really. So there was that.
Last reviewed January 2018.
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