Self-harm: Parents' experiences
Support for parents and carers dealing with self-harm
Although there are various services for young people who self-harm, those who look after them may need support themselves. The parents and carers we spoke to told us what they had found helpful and what support they would have liked (see also ‘Looking for information, help and support’).
Family, friends and work
Many people were supported by their partners, family and close friends. Gwendoline said she felt very lucky that her husband was so supportive. She didn’t know how she could have got through the last six months without him. Friends who were non-judgemental were valued. Sarah Y’s friend gave her practical help in looking after her other children while Sarah was dealing with her daughter’s self-harm. On the other hand, Debbie said she had lost a lot of friends because they didn’t understand.
Debbie lost some friends because they didn’t understand.
Debbie lost some friends because they didn’t understand.
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Yes.
“I’ve got enough to deal with at the minute to worry about what you think about it.”
For Tracey work was a welcome distraction though sometimes it was a struggle. She was given counselling support.
For Tracey work was a welcome distraction though sometimes it was a struggle. She was given counselling support.
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Support groups were helpful for some parents, though often they focussed on specific conditions such as eating disorders. Several parents said they would like the opportunity to speak to other carers of people who self-harm. ‘If I could hear someone else saying, “Oh yes, my daughter, son, has done that,”’ Joanne told us, ‘then perhaps I might feel better about it.’ Some felt they would prefer speaking to ‘strangers’ who didn’t know their family. Susan Y explained: ‘I was desperate for some support group. I was desperate to find somebody to share the experience with, but somebody who didn’t know me because I didn’t want that personal information about my daughter being shared.’
Erica would like to talk to other parents and hopes a support group can be set up.
Erica would like to talk to other parents and hopes a support group can be set up.
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I think what I would have liked is more parental support. It’s very difficult, when you’re in that situation, you don’t exactly want to go and talk to other people because you’re so focussed on yourself but, as time went by, I realised, especially in the past six months or so, because there are still really hard times. There are still very, very hard evenings, very hard nights, when she gets very upset and slightly unsafe. At those times you feel you feel, “God I can’t go on. I’ve had three and a half years of this, I can’t see an end of it and I can’t go on.” At those times, it would be really nice to be able to pick up the phone and talk to somebody who knows what you’re talking about. If you talk to your friends, with all the best will in the world, and they’ve been absolutely amazing, my friends and colleagues, they really have, but their reaction is quite justifiably, “Oh my god.” When you say what happens. I have met and spoken with some other parents over the years and their reaction is, “Yes and that’s how I deal with it.” And it’s that understanding of where you’re coming from.
Yes.
So that’s what I miss and that’s what would be really nice to know that there is some sort of mutual support.
Doesn’t have to be formal. You’re not talking about receiving counselling from somebody else, you’re talking about being able to pick up the phone and say, “I’m having a really really hard evening.” And have a chat.
Yes.
Because again, professionals, they’re wonderful, they’re amazing but they’re very professional. Quite rightly so and there isn’t that level of sympathy.
Yes.
Which you wouldn’t want anyway because you’d be crossing boundaries but you it’s.
Just to talk to somebody who’s been in the same place and really does understand it from that point of view.
Yes.
Yes.
Yeah.
So is there a chance of that being set up do you think?
Well, myself and other parents, you know, when an idea is right it seems. I contacted the CAMHS people saying, “What about this?” And they came back, saying “Actually, there are other parents saying exactly the same thing so we’re at the very initial stages of working on a parental group.” I think the support element is a little bit down the road because we have to think exactly what we want but it is about getting together and asking questions and how to find answers. And not everybody has had the positive [laughs] positive experience of professionals. Not positive experience but, you know, the good experience with professionals.
Yes, yes.
That I have had, other parents haven’t and I think that’s equally important to discuss why they feel how they feel and see where we can go with that in a non-confrontational manner.
People talked about their contact with mental health charities and helplines, especially Mind, Young Minds, and Rethink Mental Illness. Rethink provided a mentor for Philip and Mary’s son, and a local charity was a source of funding for carers to take a break. Audrey and her husband were greatly helped by a worker from Penumbra. Jane Z said Harmless, a self-harm support charity, ‘is exactly the kind of help we need. It is practical. It’s not interrogation. It’s not judgemental. They seem to have exactly the understanding of what this situation is, i.e. it’s not a disease.’
A mental health charity worker was ‘an absolute godsend’ for Audrey and her husband.
A mental health charity worker was ‘an absolute godsend’ for Audrey and her husband.
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And she has arranged goals for [my husband] to meet. She has arranged ideas that my husband never knew were possible before. She has helped put steps in place that he then has something to look forward to, you know. It’s all about helping him change the way that he thinks and think that his life doesn’t have to be the way that it always was. So and she’s also, going to do CBT therapy with him. She has also, off her own back, investigated and looked into and researched all about PTSD.
And she’s wanting to do some work with my husband on that as well. I mean this is this is not even in her job description. She doesn’t have to do this kind of stuff and yet off her own back, she does it. We are so lucky to have her alongside our GP and our new psychiatrist and our mental health worker. I mean without them, now that we have a team that is working so closely together to help, it makes all the difference. It’s brilliant and I’m just glad that my husband has got all the support that he needs and that he’s getting it and that’s it.
Sarah Z phoned a helpline when she was ‘utterly miserable’.
Sarah Z phoned a helpline when she was ‘utterly miserable’.
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Does that exist?
Yes, yes.
I think I might have gone via Child Line and to somewhere and I phoned them up and because just because, you know, I wanted to talk to someone and they were fantastic and I just cried at them really and they said, you know, they were good. They said it’s not it’s not the worst, you know, it’s not the worst things they’ve heard by a long way and to, you know, it would be all right.
So that was helpful and…?
It really, yes, it really was. I think I think my husband was away. He travels a bit. I think he was away so I felt really on my own. I’d have never imagined phoning up a helpline [laughs] a couple of years ago. There you go, they obviously seem to serve a purpose.
Some parents found support and information through the internet. Several mentioned Time to Change, a site sponsored by Mind and Rethink. Internet forums could provide a place to share experiences, but parents acknowledged that there might be problems. Alexis advised: ‘There’ll be lots of really needy people and you have to be very careful that you don’t take other people’s stuff when you’ve got your own stuff to deal with’. Sarah Z found forums which made her feel worse. ‘It was very gloomy reading,’ she told us, ‘and didn’t offer any constructive helpful advice.’ Twitter posts helped Joanne understand why people self-harm. ‘You can follow people who are actually doing the harm and see what they’re going through, whereas my daughter wouldn’t tell me. I’d just see the harm, but they explain what they were going through to do the harm in the first place.’ Susan Z talked about web pages with positive information, hints and tips for coping with self-harm.
Alexis says internet forums are useful when you don’t want to ‘burden’ your family. You can post at three o’clock in the morning, and talk to people who understand.
Alexis says internet forums are useful when you don’t want to ‘burden’ your family. You can post at three o’clock in the morning, and talk to people who understand.
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I think, for me personally, if I was to analyse myself, I’m a fixer. I probably give more to these forums now and probably have always given more. I mean I’ve made friends with people who maybe have a child with borderline personality disorder because I’ve been willing to share some of my experiences and I want people to know that there is life after all this. It might take a long time and it might be a different life but I think sharing can be very cathartic. I think sometimes if you feel you, you know, I don’t want to use the word burden, but if you don’t, if you feel you’ve shared enough with your own family, your partner, whatever, sometimes it can just be somewhere where you can go and let off steam, where you can go and say, “I don’t know what to do.” It can be a place, usually, the forums will be run by people with quite a lot of knowledge so I mean there will, there should always be information pages, you know, where you can actually go and get facts. It can be anonymous and for some people that’s really important.
You can, you know, the other great thing about the internet is you can post something at three o’clock in the morning. You know, when the house is quiet and you’re scared and you think, “I really can’t wake my partner again.” Or whatever, you know, you can go and maybe talk to someone who’s on a totally different time zone to you but understands. But everyone’s experience will be different. I’ve met, I’ve met some amazing people, with very different experiences, but again, it’s like reading that one sentence in a book, if someone can just say to you one thing, one thing. I mean there is, there is a lady I’ve got to know quite well and her daughter is a few years younger than mine and she’s now just getting to that stage where she’s starting to let go a little bit, you know, to actually step back. And, you know, I can quietly encourage her and say, you know, “You’re just doing so well. It’s hard. I know how hard it is.” But the relief you feel when you know you are talking to someone who really gets you, even if their experience is different, that they know the pain, they know the fear, they know the anxiety, they know that feeling of bleakness that you, they know that feeling of absolute terror that you might lose your child. There, you don’t feel so alone and it can be an incredibly lonely place, you know, sort of, when your child is growing up with lots of issues and lots of problems.
People may need help from health services when they are caring for someone who self-harms. Audrey’s GP was ‘brilliant’ when she became depressed. Isobel said her GP was ‘really helpful’, but Susan Y’s GP told her there was no help available, and that she should use her own resources and find someone to talk to. Several parents had benefitted from counselling. Tracey learned coping strategies and valued the chance to ‘offload’ and ‘put the feelings somewhere else for a little while and talk about them.’ A private counsellor helped Annette understand herself and what was happening to her son. She said ‘I’d pay anything just to be me again, just to be happy.’ Joanna was pleased with the counsellor she saw through her work, but decided not to take up the Mental Health Service offer of support for carers: ‘I said “No, I will cope by myself.” Besides, I am a very practical person. Tell me what to do, in practical steps and I’ll do it. I don’t like airy-fairy talk. I don’t like theorising so I didn’t contact them back.’ Jo-Ann had received cognitive behaviour therapy (CBT) and dialectical behaviour therapy (DBT). She said, ‘I think they’re both equally valid but DBT gives you the tools that you need, rather than doing it for you, they enable you to help yourself.’
Jo-Ann describes the dialectical behaviour therapy (originally designed for people with borderline personality disorders) which helped her.
Jo-Ann describes the dialectical behaviour therapy (originally designed for people with borderline personality disorders) which helped her.
Sex: Female
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Right. It’s two and a half hours skills group and then one hour individual one to one therapy. So the, the one to one therapy, you talk about whatever has come up during that week. Right, so basically you have diary sheets and on that diary sheet you, on one side it’s there’s a grid and you have to put, have to rate each emotion that you have that day , your strongest emotions. You know, so there’s things like quitting therapy, suicidal urges, self-harm urges, urges to take drugs or alcohol. And then there’s so they’re the urges and you, you rate them. Then you rate joy, pain anger, shame, fear, you rate them and then then you rate whether you have self-harmed so action to urges and underneath that you write what each day has held for you so that you know what’s triggered things.
And then on the back, there’s a lot of skills. So there’s four modules. There’s mindfulness, interpersonal skills, distress tolerance and emotional regulation and within those modules there are many skills. So then you have to write down which skills you’ve used and whether they, whether you’ve thought about them, whether you’ve used them, whether you could couldn’t, whether they worked, whether they came naturally to you at a rating of one to seven. So you, you rate those and then you go to group and you feedback, not your personal stuff. You feedback your personal stuff to your individual therapist and she’ll go through what, what you’ve experienced and then the group therapy, you read your skills, so what skills you’ve used during the week. You don’t you don’t tell anybody why you’ve needed them unless it’s appropriate. You never ever discuss self-harm. There’s a lot of rules in place. It’s very, very strict and structured and then you learn, so we’re on mindfulness, the mindfulness module now and distress tolerance.
So you learn those skills and then you go away and practise them. And when you’re going through anything, once you start learning them, when you’re going through like, for instance, when [my daughter] was smashing her head on the on the floor, my immediate response was grab her, just stop her, do anything you can, panic, you know, just the emotion kicked in. But the DBT skills I used them and they enabled me just to sit through the emotion, know that it’s upsetting, but I could sit through it and I could get through it, just take a step back, not immerse myself fully into what was happening. And so you put, you, you just think of the skills, they just become fairly natural to you once you, it’s a long intensive course. It’s a year at least but I’m on a top-up course now so this is, I’ve done the year and then I stopped and went back. I was referred back. This is six months to a year and actually, it’s more embedded now and I find that I use the skills more easily. Things like using opposite emotion action, if you don’t if you don’t want to go out, if you don’t want to see anybody, the, the right thing would be to actually go out and see somebody. So you do opposite and, you know, sort of increasing positive emotions and there are so many.
It it’s very, very therapeutic and it is very structured and it’s not based on what’s happened to you in the past. I believe a lot of people are, have been abused, that go there, it’s about radically accepting. You can’t change the past but you can let go of the suffering and you can still have the pain, but let go of the suffering. It’s quite Zen. It’s very Zen based and it does really, really help. I would say anybody that is having, it’s not just, it is designed for people with borderline personality disorders but, where we live, it’s, it’s traits of as well. So although I’ve just got traits of, they accept me but one of the criteria is that you self-harm. So they, you know, unless you’re a self-harmer, you wouldn’t get onto the course but I would recommend anybody that’s struggling, if they could get on this course, it’s fantastic, very, very good.
Many parents wanted information and advice. Some had found this through websites or books. Liz said she did a lot of reading, which was very helpful, but her husband ‘didn’t want to know. If he had a moment when he wasn’t dealing with an issue, he wanted it to be for himself’. Susan Z has read some ‘brilliant’ books, and would like leaflets or flash cards to summarise their main points. Jo didn’t want written information, but would have preferred to be put in touch with a ‘befriending service’ where she could meet someone in a similar situation ‘for a cup of tea’. Nick said, ‘A lot more information about frequency, causes, and where to go for help would be really useful.’ Joanne wanted practical advice, ‘someone to say to me, “This is what you need to do with your daughter.”’ Jane S has written a book to help parents of young people who self-harm.
Jane S talks about her book ‘The Parent’s Guide to Self-Harm: What Parents Need to Know’.
Jane S talks about her book ‘The Parent’s Guide to Self-Harm: What Parents Need to Know’.
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So it’s not a book about my own experience with my daughter. It’s not my story. It’s a book that gives practical suggestions and takes the reader through from discovering self-harm to understanding self-harm, right the way through getting professional help and support through recovery to managing vulnerable times and overcoming and it has a first aid chart as well and lots of references to other organisations from where parents and carers can get help. And I think also I’m hoping that it’ll be of real use to medical staff and other interested carers, such as, you know, counsellors and other, other people in caring roles.
People told us about other things that helped them. Some mentioned meditation and relaxation, taking exercise and distracting themselves with enjoyable activities. Nicky’s training as a Samaritan was probably ‘one of the best supports’ she had. Several parents talked of the comfort they gained from their faith. ‘Prayer has been helpful,’ Joanna told us. ‘It calms me because I believe there is a plan and greater power that will see me through.’ Sandra said her church pastors ‘come to the house and pray for us as a family and counsel us, so that has been our support network as opposed to accessing the CAMHS (Child and Adolescent Mental Health Service) family services.’
Nicky’s Samaritan training gave her ‘that tiny bit of distance’ that enabled her ‘to hold it all together’.
Nicky’s Samaritan training gave her ‘that tiny bit of distance’ that enabled her ‘to hold it all together’.
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And I turned and I walked away and there was this completely stunned silence because what she was really looking for was some kind of highly emotional response. She didn’t speak to me for about a day and a half because she was so annoyed. She said to me afterwards, “You weren’t supposed to say that. You were supposed to say something else.” And it was like, “Well, that was the day I decided we were playing by different rules.” So actually, that that training has, I found it really helpful in in distancing myself from, only a little bit because I’m because I’m a mum, but it’s just given me that tiny bit of distance that’s enabled me to hold it all together when I’ve needed to.
Yes.
And that’s been most useful for me.
Sandra says God gives her inner strength and inspiration.
Sandra says God gives her inner strength and inspiration.
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Last reviewed December 2017.
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