Content note: self-injury
I (Alison) started to self-harm as a teenager, cutting myself on the wrist. At the time I was completely unaware of the fact that other people self-harmed and had no way of understanding what I was doing. Later in my life, at a very difficult time, I began to cut again and extended my self-harm to overdosing, resulting in some painful and humiliating experiences with mental health and A&E services.
And then, after a few years, I stopped again. One of the things that helped me to stop was the death of a friend from an overdose; it shocked me into a different way of understanding what I was doing. Although I didn’t stop immediately, it had a significant influence. Another thing that helped was good, boundaried psychotherapy, which I was privileged enough to be able to pay for. Mental health services did not help. I remember a crisis team staff member saying to me once: “if you know so much about mental health, why are you doing this?”.
When I was asked to do an evaluation for Self Injury Support (SIS), I jumped at the chance to do something of value for an issue I feel passionate about. SIS wanted to review their own services but also wanted to understand more about how people who self-injure were currently experiencing other services and what they would find helpful from VCSE (voluntary, community and social enterprise) services such as SIS.
Last year we carried out a survey that reached over 100 people and I undertook eight in-depth interviews. There is much that can be said about the findings, so I will pick out just a few key themes.
Poor experiences of services:
First and foremost is the disappointing, but perhaps unsurprising, finding that many people have very difficult, sometimes punitive, experiences in A&E and with mental health services. It is clear that self-injury is still poorly understood and often judged as deliberately manipulative, attention-seeking or time-wasting by many people, including those who are expected to provide care and support. The one word that echoes throughout this report is ‘non-judgmental’: the need expressed over and over again in different ways for people to be listened to with compassion and without judgment, blame or shame. The following quotation, from a report at the origins of Bristol Crisis Service for Women (which became Self Injury Support in February 2014), could have been written yesterday:
‘Professionals are often terrified by self-injury. Their normal empathy with others’ distress and their confidence and ability to help often desert them when faced with someone who persistently hurts themselves. This problem reflects a serious and widespread lack of understanding of self-injury, which results in great inconsistency and inadequacies in services.’ (Arnold, 1995)
Counselling or psychotherapy had been helpful for some people; although there were also examples of therapy being limited, denied or services overly concerned about risk refusing access. Experiences of crisis services were very mixed, with some crisis teams experienced as judgmental or punitive but a few crisis houses encountered as more helpful.
The role of self-injury:
Most people said that their reason for self-injuring was to deal with emotional pain or to punish themselves. It is also important to acknowledge that around a third said they self-injured in order to prevent or delay a suicide attempt. Many described their self-injury as a coping strategy: to calm and ground them, to comfort or soothe them or to release overwhelming feelings. Having said that, many people said that they wanted to stop, but on their own terms or when they had reached some understanding of it and found alternative ways of coping. Unfortunately, the understanding that self-injury can be a coping strategy seems at times to be used against people by healthcare professionals – with it being given as a reason for dismissing them or denying them care and support.
Self-injury across the life course:
Both the responses to this survey and the interviews suggest a need for services to better understand self-injury across the life course, and not to impose age limits to support. There is an assumption that self-injury predominantly affects young people – which may be true statistically, but many continue to self-injure for decades. Over 60% of people in the survey had been self-injuring for over 10 years.
Barriers to accessing services:
Judgmental or dismissive responses had affected most of the respondents in the survey, to the extent that a few were now avoiding services completely. Others had learnt to disguise the extent of their self-injury, or to deal with it themselves. These responses from professionals seem based on the belief that people have a choice about self-injuring and that therefore they could equally choose not to do it. Many mental health professionals appear to have a limited understanding of the role that self-injury plays for people, the many ways in which it acts to release, relieve or manage overwhelming feelings. Another significant barrier to services was the requirement to stop self-injuring before being permitted to access a service.
“Under the CMHT I would often feel like I should lie about my behaviours because of the pressure to not self-injure rather than any exploration of the reasons behind it or acknowledgement that I was in distress and couldn’t just make a cup of tea.”
What would people like from services?
Looking at the responses to several different questions across the survey, it is clear that people are seeking both immediate support following or prior to self-injury (often anonymous but certainly non-judgmental) and longer term support to reach a better understanding of their self-injury. For some people, this might mean counselling or psychotherapy, but for others it could be peer support or small group support. A shared understanding through lived experience was thought by many to reduce the shame and stigma surrounding self-injury.
Many people said they found speaking on the phone difficult, which made online methods and text messaging helpful means of accessing support. Texting and online support were also more flexible for people with no privacy at home or those who had children, as they did not want to be overheard talking on the phone. Anonymity was particularly important to people with children, who feared having their children taken away if it was known that they self-injured.
Wary of services requiring them to stop self-harming prior to accessing the service, people described a more helpful approach that would enable them to find the support and understanding first, in order that they could develop alternative ways of coping that might obviate the need to self-injure. Providing support for people who self-injure is not rocket science, but it does mean accepting the self-injury and seeing beyond it to the person who is distressed and has perhaps experienced trauma in the past.
We concluded that the ideal service landscape would offer a range of services, including short- and longer-term options. It would offer:
- text messaging, online chat forum and a helpline for immediate support at the time of self-injury at different times of day, with the option to remain anonymous, alongside
- the opportunity to engage in longer term support to enable greater understanding and to find other ways of managing. The latter could be achieved through peer support, small groups facilitated by people with lived experience, or through counselling or psychotherapy.
- listening and understanding without judgement.
- understanding of the impacts of race and culture; gender and sexuality.
- the opportunity to understand the role and meaning of self-injury in a person’s life, to have courageous conversations.
- the opportunity to connect over other things too – so that self-injury does not have to be the topic of conversation at all times.
The following quotation is from a person describing what they would find helpful from services:
“Talking to someone who won’t judge and whose primary goal isn’t to get me to stop (unless that is what I am asking for). Who will understand that it is helping me in this moment. Someone who is willing to try and understand and won’t treat me like a naughty child. Being able to feel like I can talk openly about it and that I don’t have to hide it.”