Self-harm: Parents' experiences

Looking for information, help and support about self-harm

When people discover that someone close to them is self-harming they often search for information and support. The parents and carers we spoke to told us about their experiences of this.

Jane S found information about self-harm from several different sources. This helped her understand and support her daughter.

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Age at interview: 54

Sex: Female

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No one was helping us to look ahead. No one was helping us with strategies. I had to do some reading, you know, for myself and to begin with, I must admit, I didn’t. I looked to my GP and NHS Direct, you know, who I rang when things got really difficult with wounds and learning wound care. I’d been a teacher so I suppose I knew a fair bit about first aid but, you know, not, not huge amounts.

I personally think the, the information that I, I got for myself was really important. I, I believe that if you understand why somebody is doing what they’re doing it just gives you much more insight and it helps you to, it helps to give it some rationale, you know, apart from anything else. It also can help you feel not so alone because you might get, you know, narratives of other people. You know, so that you realise and you can pick up some hints and tips from them and just learning about it either from, you know, the website or from books was something I did. I have to say that nobody suggested that I did that and I think that would have been useful. I think, having, you know, downloads about anger management was completely off the mark and was a bit hurtful really.

I don’t think, and I’m sure my doctors wouldn’t mind my saying, I don’t think they really have much experience about self-harming and couldn’t offer anything. They couldn’t really support me with the issue. They supported me well on other, you know, other things and with me personally and with the panic attacks and all the other things but they didn’t really link it to, to why I was feeling like that. They just dealt with that but they didn’t link it and they didn’t give me any suggestions as to how I could improve things for my daughter, which of course, in turn, would have improved things for my health. Yeah, so I just, I researched if you like, and looked, you know, for myself.

Were there particular websites or particular books that you remember being helpful?

I looked at Mind. I found the Mind website very useful and books, I got a lot of books, actually. There wasn’t anything for parents, at the time, so I, I had to find things that clinicians had written, which some of it was a bit hard to stomach because it’s a bit impersonal and, obviously, self-harm and suicide comes kind of often lumped together and so that, that’s yeah, that’s a hard read for a parent, especially if people haven’t experienced it for themselves. They, they’re talking about cases and case studies and they’ve got a lot of, a wealth, obviously, of medical experience and knowledge and that’s very useful but the human side of it I think needs, needs to be told as well and understood.

I also found sites like Red Cross and St John’s Ambulance very, very helpful, for just checking up on the first aid side of things. I think that’s really important. I think you can’t, as a parent, just let a child tend to their own wounds and not be at all interested in that.

For most parents their first instinct was to look on the internet, though Mary and Pat said they hadn’t thought of this. Susan Z and Dot would have searched online if internet access had been easily available when their child was self-harming. ‘We live in a world with the Internet now,’ said Dot, ‘We can all go on to the Internet and Google. I guess if this was seventeen years ago I’d go straight on to the computer when she’d gone back to school and I’d be Googling self-harm and looking up anything I could find, any information at all. And then just looking also to see if there were any helplines or anywhere I could go.’ Tam found a useful site where she could print off items to show her daughter. Jane S used online first aid advice from St John’s Ambulance and Red Cross when she dealt with her daughter’s cuts. Parents also used the internet to search for wider information about their child’s mental health problems.

Several parents stressed the importance of finding reliable information from trustworthy sources, such as NHS Direct or mental health charities.

Sharon wanted to find reliable research-based information and properly administered sites.

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Age at interview: 37

Sex: Female

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I think it’s, the important thing is finding reliable researched information. It’s very easy to, to look for anything and get onto a website that’s got a forum, that is just people chit-chatting and spreading their opinions. It’s much more difficult to find somewhere that has got researched knowledge and background, as well as people talking and talking about their experiences and, and what they found helpful because it is helpful to, especially with things like medication, to discuss with other people. “I’ve had this. It’s not listed in the side-effects, has anyone else noticed this? Should I go and see the doctor?” But it’s got to be people that, it’s more helpful if it’s people that have experience and, certainly, if it’s, if it’s administered and, and watched over by people with expertise and that have done research in those areas. It’s not just an opinion or hearsay.

Are there particular sites that you can kind of name that you’ve found helpful?

Off the top of my head, BEAT is one that’s quite often recommended for people with eating disorders. I get e-mails regularly, a newsletter from Psych Central, which I’ve found quite beneficial because it’s, it’s literally a, a weekly e-mail with different bits and bobs on it and you can dip in and out of it as you please. But then you’ve, it’s down to you to then follow-up from what they’ve linked, where it’s come from and who’s put it there in the first place. That’s a couple that I use and the one that we’re working on with this.

Obviously, that’s why I’m doing it because I think it would be very beneficial. I think it would be very good, especially in slightly more unusual circumstances where, for example, a parent has self-harmed and then a child self-harmed and, you know, there’s, there’s going to be people out there like that and there’s going to be people out there that think they’re the only ones. And even if that’s just a small comfort for someone to know that they’re not the only ones. This has happened before and there’s light at the end of the tunnel, it’s, it’s not them. It’s not their fault. This is the way things are nowadays and I think that could be very helpful and you can, you can talk to, to people and share experiences and, and ideas on how to handle things. Even if it’s just getting things off your chest or, you know, we had a really bad day to day, such and such happened and oh, you know, if you need to talk you can send me a message or if you need to talk to an expert, ask a doctor or look up, is this a side effect from something or is it a sign of something? Where do you go for help? And to have lots of links from there of where to go, who to talk to, where to get help in one place, would be very beneficial.

Vicki Googled ‘self-harm’ and found several helpful sites.

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Age at interview: 44

Sex: Female

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Initially, I just I just Googled "self-harm" and just dotted through the websites and I looked on the YoungMinds. I can’t even remember the names of all the ones I looked at now and I am aware that when you do go on the internet, you get, you can get unreliable information so you have to take things with a bit of a pinch of salt. I looked on the NHS website and I think I found one called, Where’s Your Head At, which is a local authority kind of, that that was pretty good and I like I like the way it has things for teenagers and for parents as well, very much like the YoungMinds, because you are in this together and it’s good to have advice for both. But yeah, it was just generally looking for… I Googled self-harm, treatment for self-harm, self-harm symptoms and self-harm causes, all sorts really and just spent, I was just looking at different types of information.

And was that a one-off single occasion information splurge or did you go back to it.

Oh I went back to it.

Time and again?

Yes, yeah, I sort of, I think probably the first day I spent a good couple of hours and then, you know, occasionally, I’ll pick up my iPad my notepad and just have another look and see what’s happening.

And do you still do that?

I’m doing it less and less. I think that the further we get down to her getting treatment yeah, I feel like I’m kind of got to a point where I’ve got enough information and a lot more information, I don’t know if it would help me at the moment.

Some parents, like Sharon, wanted to find websites where people shared their experiences of self-harm. Ruth said ‘It would be really helpful to have other people’s experiences and have professional points of view, so that it’s not such an alienating experience as it has been for me.’ Others wanted something more factual.

Tracey found common sense advice on websites where people talked about their experiences of self-harm.

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Age at interview: 52

Sex: Female

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I still would say, have a look, see what’s there, see what other people are saying, experiencing, what’s helping them, is it changing, is it, you know, particular circumstances that are causing it. Just have a look and see what other people are saying, what other experiences people are having and I think the sort of step-by-step advice about what are often quite common sense things because, at the end of the day, it isn’t the, the answer lies with the young person really and I think that’s it and the family. For the young person, they are making choices and they’re going to make a lot of wrong ones and we can talk to them until we’re blue in the face and, believe me, we do and some days you think you’re in an, you know, you know, an alternative universe somewhere because, you know, you’re constantly, constantly, constantly on this track of, “You know if you do that, that might happen. You know if you do that, that might happen. So think about it, [name] and try not to do it again.” “Yeah, okay.” Happens again the next day [laughs] and it just goes on and on and on.

So in the end, all you can do is, you know, there is good advice and sometimes what that, the thing about going onto the websites is you’re so embroiled in it emotionally, you’re tired and you’re anxious and you have all the other things going on, sometimes to see some detached common sense advice actually does help to clarify certain things in your mind and, “Oh yes, I know that makes sense.” And it helps you to reinforce things but, at the end of the day, you’ve only got your own resolve and how you can do your best to try to deal with things on an informed basis and I think that helps you to do it on an informed basis.

Roisin wanted information, not emotional support, from online forums but couldn’t find any.

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Age at interview: 45

Sex: Female

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Yeah, I still did try and look for some other stuff because I thought, oh well, you know, it’s been a few years. Perhaps there’s other thinking and stuff behind it so, you know, I did go online and have a look and try to look for like sort of like forums for parents of people who, cos it’s one thing being aware of it and knowing why people do it and that and it’s another thing when your own daughter is doing it [laughs]. But I couldn’t seem to find anything. I don’t know if I was looking in the wrong places but I certainly couldn’t seem to find anything so I just found a couple of like reports and stuff like that into, you know, self-harming and what the current, you know, what the current thinking is, the reasons why and, you know, about treatments and stuff like that for it. So I sort of looked at it from that standpoint. You know, and, and again that’s typical of me. I didn’t look at it for, you know, the emotional support bit. I was looking at it, well what does the current research say [laughs]. So yeah, I did look for, look for some stuff.

So you were you were looking for information, not emotional support?

Yeah, yeah. Yeah, I did, I did try and look for, I wasn’t, when I was looking for forums or, you know, some sort of char thing, it wasn’t necessarily for emotional support. It was just to sort of try and find out what other people, what other girls of her age were doing and how other people find found out and what other people what other parents did, rather than anyone, you know, because I don’t, I’m not really one for looking for emotional support. That’s just another one of my things [laughs].

Sometimes material found on the internet can be disturbing. Ruth said some sites scared her instead of reassuring her that her daughter would get better. Susan Y came across lots of ‘horror stories’ and was upset by ‘scaremongering’ websites. She wanted to understand why her daughter self-harmed but was worried by sites which linked self-harm to abuse, as this wasn’t an issue for her family. While abuse and self-harm are not necessarily connected, self-harm is more likely in young people who have experienced abuse or neglect. Gwendoline looked up depression and found this upsetting. She explained ‘It made me think about things that I hadn’t maybe thought about. And so I started worrying about those so I just felt it better not to.’ Alexis decided not to look for information on self-harm: ‘I just wanted it to go away and I think I would have really scared myself at that point if I’d looked too deeply into the information on self-harming. I just got terrified about what maybe was going to happen, and, at that point, I didn’t need to know. I just needed to deal with what was happening.’

Jane Z didn’t use the internet to look for help, partly because she was frightened by what she might see. She would have liked guidance about useful sites.

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Age at interview: 49

Sex: Female

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Did you find anything on like on the internet, or books, at all helpful or?

Bizarrely, my daughter has, has spent hours, I think, over the last year, trawling through all kinds of things. I haven’t, and I don’t know whether that’s a generation thing. I use the computer all the time, and I’m something of a book addict, and all the rest of it.

I don’t know why I haven’t, and, you know, one of the first questions you asked me was whether I’d looked at your website before I came, [laughs] and, and you asked me that and I thought, “You stupid woman, why haven’t you?” And I should have done. I think, it it’s about this stupid place that you find yourself in. It’s really, really hard, to accept, that, and it’s not about not being able to accept that anybody else can help, part of me, is frightened by what I’m going to see on it, because, I actually think I’ve seen enough in my own house. I don’t need to see, I don’t know, I don’t need to see it, I don’t I don’t want to see, all of this stuff out there, because it hurts too much. So, I think, I kind of deliberately haven’t been looking.

And, I think, I felt, that the people around me should be giving me the help I need, and, I actually feel massively betrayed by the whole CAMHS experience. Because I, I don’t ask for help easily, at all, and, when somebody is sitting in front of you asking them for, for help, and you don’t give it, it’s a huge kick, huge kick, and. So, that, you kind of find yourself sitting in this black hole, and it’s quite difficult to look for help. And, so I think, I think that’s probably why I haven’t, and then you get these sort of little snippets of things, so, you know, husband accidently comes across somebody who turns a light bulb on, and you think, oh thank goodness for that.

So what sort of support and information would you have liked, and?

I don’t know, because I don’t know how I would have accessed it.

Yes.

This is the stupid, this is, it is the stupid thing about the whole thing. Because, it sounds wonderful, the website, and everything, the HealthTalkOnline and all the rest of it. But I don’t know whether I would ever have looked at it. I think if, I think if this lady in school, had said to me, “Have a look on this website.” Or had said to me, “Look on this website.” I would have done. I think, when you find yourself, drifting is too soft a word, lost somehow, in this sort of way, you need somebody to tell you what to do. So, and this is where you kind of need somebody to spot the signs, and say, “Look at this. This is where you should be looking. This is what you should be doing next.” And then all right, I’ll sit for an hour or two and I’ll work it out for myself, because that’s the way I do things.

Sarah Y thought there was a 'lot of rubbish' on the internet. She decided to wait until her daughter had seen a psychiatrist before making her own investigations.

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Age at interview: 42

Sex: Female

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In all honesty, with this one, I’ve I have at times looked up mental health issues but I think there’s so many confusing issues with regard to my daughter because she’s got the learning difficulties, you know, the social issues already, I think, you know, trying to assess whether she has some other mental health issue or not is something, that’s something slightly beyond me at the moment. That since this latest incident I’ve had flu, you know, and a couple of weeks more than that, you know, flu, Christmas, New Year, things have been slightly busy, you know. If we weren’t seeing a psychiatrist until the end of March, yes, I would start looking at things and start thinking, I want to start finding out but because I know the first psychiatrist appointment is at the end of January so only a couple of weeks away, it then gives me think, look, I know the next couple of weeks in my life are really busy, I’m actually just going to say, okay. We we’ll see what they say.

We’ll see what their response is. If it’s a non-starter, yes, then I’ll start looking at things but, hopefully, they’ll say, “Well, we can’t say at the moment. I need to see her for, you know, further appointments.” Or whatever I’m sort of reasonably happy at the moment to leave it in their hands to see where we progress to, rather than start trying to go off, look things up on the internet because there is so much out there that is a complete pile of rubbish that I’d rather say, right, okay. We’ll leave it, leave it to the experts for the time being. If I feel like they are not making progress, yes, I will go and start making my own investigations and what have you but we’ll leave it until then.

Several parents found useful information and support from mental health organisations, through information leaflets, helplines and face-to-face contact, as well as their websites. Tracey had been in contact with Parentline, I’ve Got a Teenager, and Young Minds. Debbie and Vicki had also been helped by Young Minds.

Ruth was ‘at her wits’ end’ before she found support through a local mental health charity.

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Age at interview: 40

Sex: Female

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I think that I was completely at my wits’ end when I came here to Penumbra. Absolutely in the wilderness in terms of information or, you know, how I felt myself and about how disturbing the whole thing was. And I think that speaking to [name of counsellor] who was able to make me feel a lot better about all of it. And she gave me, she gave me information to take away and read myself and, and pointed me in the right direction in terms of websites and everything, but it was really helpful information. That was a turning point for me, because I had never heard of [mental health charity]. And so now there’s a parents’ support group here. So that’s a really, and, and to hear another parent’s perspective is really very helpful indeed, when they describe things that you might have felt yourself but not thought were a legitimate way to, to feel. So very helpful. So this is a really good organisation for parents.

Being given information is one thing, but then doing something with that information is another. So I’m just kind of interested in that bit in the middle there. You took that information away from here and you managed to do something with that information inside yourself to give you a different approach and a different attitude. Can you say anything about that?

It opened my eyes to how widespread this is. I didn’t know so many people did it, I didn’t know so many various types of people did it, and different ages, and indeed that, what physi-, physiologically what happens. It all makes a lot more sense to me now. To actually see that written down and, and to process that and not just to wring your hands and say, you know, “My child is completely lost.” You know, there is research and help and people who understand about it. That they are there. I had barely heard of self-harm, barely heard about it. And if anyone had asked me, I probably would have thought that it was attention seeking, you know, that it was like, it was rebelling behaviour. So my understanding of it has increased.v

Parents told us about other ways in which they had found information. Isobel had been helped by books, newspaper articles and TV documentaries. Nick and Sarah Z had learnt about self-harm through a talk at their child’s school by a psychiatrist. Dot was working with a leading authority on self-harm who helped her understand reasons for the behaviour. Jim identified world experts on eating disorders and self-harm through the internet and made personal contact with them through email or telephone. Books and brochures from Rethink and Mind were helpful for Susan Z. She sent her daughter links to YouTube videos to show her that people can recover from mental ill health.

Sometimes people seek help from their general practitioner when they are concerned about a young person’s welfare. Jane S’s doctors supported her personally (see also ‘Going to the GP’) but she didn’t think they had much experience about self-harming. ‘They couldn’t offer anything’, she said, ‘They couldn’t really support me with the issue’. Alexis remembered speaking to her GP: ‘He said, “Well, you know, it is just going to get worse.” And it was like, “Ah, what do you do with that? Thank you for that grenade you have just handed me.”’ Dot didn’t feel she could go to her GP as her daughter had confided in him and she thought it wouldn’t be fair. When Susan Y took her daughter to the GP he refused to refer her to the Child and Adolescent Mental Health Service because he said she wasn’t mentally ill, and Susan found little support for her own feelings either. She told us ‘When I went back to the GP about how I was feeling, “Well, it’s not impacting on you. Are you sleeping?” “Yes.” “Are you off work?” “No.” “Are you, is it affecting your lifestyle that you can’t function?” “No.” So because I didn’t tick any boxes, therefore, there’s nothing there and, actually, what I wanted to do is I wanted to talk to somebody about how I was feeling and how I felt.’

Sarah Z was reluctant to approach her GP for help.

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Age at interview: 48

Sex: Female

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And is there any support that you would like that you haven’t had?

I think information. I think I think information and a greater degree of confidence in in the medical services because I think that I should have gone through my GP. I think that should be the way that you get help with things like this and I think I should have been able to feel that they would know enough about it to be helpful.

Yes.

And I didn’t feel that. I felt quite cynical about it and I don’t know whether that was justified or not but I suspect it was and I just thought I thought it was better to go to somebody who I did know, had experience with, which is how we ended up with a, you know, a child psychologist.

But it, no, it would be, it would have been great, still would be great because we’re not out of it, you know, we’re in a better place at the moment but I’m sure it hasn’t left altogether. I think it would be fantastic to have more accessible resources, which might give practical guidance, you know, about what does help.

And whether, you know, what happens if you do go to your GP, what will happen, you know. Who will they be referred to and how will you be treated as a family? You know, what are the implications for the other children?

In some cases parents had looked for help but were unable to find any. There were no leaflets in Jackie’s local library. She found information on Google but wanted personal contact. Susan Y looked for a support group but when she rang the contact number it had been disconnected. She said there were services for the person who self-harmed, but none for parents. The importance of self-reliance was also pointed out. As Tracey says (see clip above): ‘At the end of the day you’ve only got your own resolve’. Jackie advises ‘Try and get help, but be resourceful yourself as well, because you can’t solely rely on outside help at all.’

Jackie found some information and a helpful website but couldn’t find anyone she could talk to.

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Jackie found some information and a helpful website but couldn’t find anyone she could talk to.

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Age at interview: 40

Sex: Female

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Could you talk a bit more about looking for information about self-harm?

Well, I suppose the Internet was the tool that I accessed. There’s no leaflets about it at all. I found myself in local libraries, just looking. I mean even working with women in homeless units, there was nothing there, you know. When I thought back about my time doing that I thought, “No, no.” There was lots of help for drugs, there was lots of help for alcoholics, there were support networks for domestic abuse, but there was nothing for harmers.

So even back, even then, a few years ago I done that and the libraries, no, there was nothing there. So I thought, “Right, okay.” And wherever I went I found myself with another eye open looking around to see if there was leaflets, information, posters, anything, in the doctor’s surgery, anything, “Is there anything here that’ll…?”

And, and if it was more widely advertised there wouldn’t be as much head banging for parents. Well, I mean not always parents, it’s not just parents that are dealing with it. For harmers themselves that want this help, “Yes, I’ve been doing it, I’ve been harming now, I want help now” they’re not going to find it on their laps. So that’s why right, okay, Internet access, I just typed in harming, harming. In fact, you know, nothing even came up for that specifically. It was counsellors. What I wanted was even, not even a counsellor, because sometimes your child’s not ready for that, someone to go and talk to, “What does this mean?” There was, there was actually no one for that, there was actually no one. No one you could go to sit and for them to say, “It’s about control. Harm-, this is what it’s about.” They’re not trying to kill theirselves. It’s not a suicide attempt. Sometimes they go a bit deeper than they meant to. It’s dee-, goes deeper than that, it’s a psychological thing.

There’s no one to explain that, you know, it, what it’s about, it, it’s a, a control thing. They have this control. It’s like anorexia and drugs, it’s, it’s a control thing. But, but there’s no one there to explain it to you. It’s a really complex subject. I mean I’ve read up on it and I’m still like, “God, this is really complex.” You need, for, for you to help your child you need to understand what it means to be a harmer, so you can help them. That’s not around, full stop, full stop. I ended up going to counsellors.

I Googled it, yeh, information, what does it mean? I’ve got that, but there was no one to go and speak to. And there was a couple of sites but it was people abroad, Americans. So that doesn’t help. I’m in Scotland. There’s nothing in Scotland, not, and I never found anything personally. So, no, it sucks, there’s nothing, nothing at all.

Those tips now you know that stuff now. How have you learned that?

The American one. There was one website that I looked at that, in fact she still has it in her room, she still has it. There was, one website that I, that I thought, “That’s helpful.” And from my own experience as well, I now know dos and don’ts. But this particular website, it was an American guy and I think it was a clinic that he had over there. He was good, he was good. He gave, he also gave fantastic tips, which were, if you start noticing the signs, look out for the signs before. Almost like an epileptic, you’re, you’re looking for the aura before you do the damage. You’re like, like, “Do you know what? I’m about to have a seizure in a minute. I can feel that aura coming on. So have a wee sleep.” It’s recognising yourself. So he gave good tips on that. That was extremely helpful. What to do when you feel that, “Oh, I’m feeling angry, you know, oh, I can feel it coming on. I feel like I want to cut myself. Right, I recognise that, so what do I do now?” So he had said that.

So I used bits of his site, but very, very few. He’s the only one that springs to mind that, that, that I used. A lot of it, no. But, so I followed this guy’s information, but he’s the other side of the world. I couldn’t go and see this guy or even phone him. Well, I probably could have, but I’m thinking, “Well, money as well of course comes into it.” Why should it always have, have to cost so much?

Sandra did not look for information and support as she used her own intuition and professional experience to cope with her daughter’s self-harm.

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Age at interview: 49

Sex: Female

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Yeah, that’s right and I wouldn’t say it’s anything that I’ve read from any manual or any book or leaflet. It just intuition, common sense approach, you know, combined with professionalism, you know, all rolled into one has enabled me and empowered me as a parent, as a mother, you know, to cope with all the stress and dilemmas and impulsiveness of my daughter and her self-harming behaviour over the years. And had it not been for that, I think I would have been on tranquilisers by now or needing therapy myself, you know, but I’m a very hands on person. I’m very dogmatic, very practical and I just do whatever it takes to get her through the day. If it means transporting her to college, you know, driving her like a taxi service, you know, if it makes her happy, I’m happy. It’s less stress for me, you know. If she’s happy, if she’s getting through the day and that and she’s not getting any absenteeism, at least something is working.

Last reviewed December 2017.