Impressions from the helpline
I have been working for PODS since January 2016 and since that time have been responsible for the helpline and support service, as well as managing the counselling centre. The helpline is currently open from 11am to 5pm on Tuesdays, and people can also make appointments to speak to me at other mutually convenient times during the week. I currently take around 15-20 calls a week, and in addition to that I receive at least 30-40 support-type emails.
PODS also holds a register of ‘dissociation-friendly’ therapists based throughout the UK—these are counsellors and therapists who don’t necessarily consider themselves to be experts but who are willing to work with clients with a history of trauma and dissociation. I currently receive anywhere upwards of 40 requests per month from survivors looking for a therapist local to them. We also provide free screening tools for dissociative disorders, which I score and send back—as many as 50 per month. As well as providing ongoing counselling, I also occasionally meet with survivors for one-off support sessions, in person or via Skype. And I moderate the survivors’ online peer support forum which provides a safe space for ‘Friends of PODS’ to ‘meet’ other people experiencing dissociation and share hope, understanding and coping strategies.
The focus of the PODS helpline is to provide signposting and support to dissociative survivors rather than being a ‘crisis helpline’ but of course I talk to people wherever they are at when they phone, although I am only available during office hours. Over the last 15 months a number of recurrent themes has emerged from my work and it paints an interesting (and sad) picture of the challenges and difficulties faced by people who experience chronic dissociation and/or could be diagnosed with a dissociative disorder.
Many survivors get in touch with us simply because they need to talk to someone who understands what they’re going through, and to reassure them that they are not going ‘mad’. Very often survivors feel extremely isolated and that no one—especially professionals—understands their condition and their experiences. I often hear stories of survivors going to their GP and being met with disbelief, or their difficulties being minimised and labelled as depression. They are offered anti-depressants and some are given ‘pep talks’ that suggest that they need to just pull themselves together and get over things. It’s quite rare to hear of a GP being understanding, helpful and supportive (although it does occasionally happen), and very few have even heard of dissociative identity disorder, let alone received any information or training around it. Our ‘DID Information Leaflet for Professionals’ has proved helpful to many survivors when they have passed it to their GP, in that it at least validates the existence and reality of dissociative disorders and makes GPs aware that there is a gap in their knowledge base.
For survivors who are referred onto mental health services, most experience tension and conflict with their appointed psychiatrist. Dissociation and dissociative disorders are dirty words among many psychiatrists, who at best say that the diagnosis is contentious and controversial, and who at worst dismiss it out of hand immediately. Rather than using any kind of appropriate screening tool or diagnostic interview, they default to a diagnosis of emotionally unstable personality disorder. This is added to their patient’s notes and rarely, if ever, revised. Some of the advice then offered is very basic indeed and at many levels inappropriate—I have heard of people being told that they should have a nice cup of tea, take up jogging, have an ice cream or go to Starbucks: there is very little understanding of trauma or substantive support to recover from its devastating effects.
Based on accounts from survivors phoning the helpline, appropriate help and treatment is rarely available via the NHS: hence the need for low-cost or sliding-scale counselling provision from the voluntary and private sector. Some survivors, with extreme effort, successfully battle to receive funding from their Clinical Commissioning Group to provide treatment, for example via the Clinic for Dissociative Studies in London. But the majority expend all their energy for living in a fruitless battle, which chronically destabilises them and further reinforces their sense of powerlessness and isolation.
In addition, I frequently hear survivors describe very difficult home circumstances, with some continuing to live with an abusive partner ‘because someone is better than no one’ or because they believe that that is all they are worth. For those in a non-abusive relationship, relatively few receive support for their mental health from their partner. Many hide their dissociativity and/or multiplicity and even some who attend weekly therapy do so in complete secrecy, as they fear rejection and abandonment should their partner discover the extent of their difficulties. Many struggle to have fulfilling sexual relationships, experiencing sex as triggering and being unable to talk about it. Often the partners do not understand at all about the effects of trauma, of the reasons for flashbacks and how to handle triggers, and it leads to huge frustration on both sides. Probably unconsciously many partners end up just as much in avoidance of the trauma as the survivors themselves, which of course is not conducive to healing and recovery.
Overall, survivors tend to feel that nobody listens to them and nobody understands: they feel utterly ostracised from normal society and that they are living a secretive, shadow life. They experience extremely high levels of shame, and a sense of all-pervading guilt and badness: that they don’t deserve any help, that they are ‘useless’, ‘pathetic’, ‘stupid’ and that they are ‘just overreacting’. Some of this belief comes from the trauma but it is then exacerbated by the reactions they receive from society at large and in their own network of friends and family. Most are intensely ashamed of being dissociative and cannot bear for anyone to know. It is quite common for calls to be made to me on the helpline in complete secrecy, demonstrating the need for our 0800 number, which doesn’t show up on phone bills.
Very commonly, survivors doubt their own sanity, and find it hugely comforting and reassuring to have their experiences and symptoms validated and normalised. They feel alone and unique in their struggles; there is tangible relief in people’s voices when I tell them that their symptoms are entirely logical in the light of their trauma, and that I’ve spoken to hundreds of other people just like them. Sometimes they just need someone to listen, without judgment, and without offering a quick-fix (especially of the ‘have a hot bath and then you’ll feel better’ variety). It is so important to validate what these survivors are feeling and experiencing, because their feelings and experiences have too often been denied or dissociated. For some a first step into accepting their trauma is having someone else validate the impacts of that trauma on them: for the first time, they are being heard and not rejected.
A number of survivors who are receiving therapy phone me to discuss difficulties they are experiencing in the therapeutic relationship. These difficulties are of course normal and to a large extent are to be expected. Having experienced a ‘frightened and frightening’ caregiver in childhood, resulting in disorganised attachment, they don’t experience their therapist as a secure base and a safe haven, but instead can find the relationship triggering and volatile. It can be very hard for survivors to mentalise and understand where the therapist is coming from: kindness can appear like grooming; the ‘rules’ of therapy, including the issue of boundaries, can feel punitive and rejecting. It has proven helpful to many survivors to be able to discuss these issues with a third party, in a way that doesn’t take sides but which promotes mutual understanding.
Unfortunately some survivors have also reported dubious and even abusive practices on the part of their therapist, and are seeking advice and support to be able to sift out perceived from actual abuse. It is a sad reality that, although the vast majority of therapists work soundly and ethically, a minority are drawn to work with severely traumatised clients because of their own needs. They then end up in damaging or enmeshed relationships with their clients which replicate the dynamics of abuse. There are always two sides to every story told, so I try just to provide a space for thinking and reflection, to be able to help the survivor to tease out for themselves if there have been actual boundary violations, and what course of action they could now take.
Many survivors get in touch who experience symptoms from the dissociative spectrum but who don’t experience a marked segregation between parts of the personality and memory disturbance as would be the case with full-blown DID. Many talk about chronic episodes of depersonalisation and derealisation but are not sure whether their experiences are valid because they don’t have parts. I reassure them that their experiences are indeed very common and I explain the trauma spectrum to them and that we are here to help anyone, regardless of where they are on that spectrum.
This sense of being ‘different’—we could call it stigma—manifests itself in a number of ways for people who access our services. Many feel this innate sense of badness and unworthiness and they are intensely apologetic for having taken up my time. Or they feel overwhelming shame at needing support or guidance. Some feel understandable anger at the lack of support they have experienced elsewhere, and for a tiny minority this spills over into a form of self-protective suspicion about my motives for wanting to help, which I fully understand. Some survivors have a fixated belief that they are beyond help and get in touch to try to confirm their position, rejecting everything that we can offer. Again, I understand this and it is painful to watch.
People do sometimes phone in a very distressed state, and it is not uncommon for me to speak to developmentally younger, traumatised parts of the personality. Again, we are not a crisis service so the help I can offer in this situation is mainly being a listening ear and providing a calming, grounding presence. I can then explain, normalise, validate, and signpost, but I am often struck by how ashamed people feel for having ended up in ‘crisis’. To me it seems utterly logical that they should be as distressed as they are, given their traumatic experiences and the lack of support available generally in society at large, and I hope that I can communicate that to survivors. There is something wrong with what happened to these people, but there is nothing wrong with them for the way that they are reacting. Ultimately, just knowing that they are not ‘mad’—that there is not something terribly wrong with them for having flashbacks, nightmares, body memories and feeling intolerable feelings of distress, hopelessness, rage, shame and despair—is the first step towards recovery. It’s bad enough to be feeling these feelings, but then to blame yourself for being defective in some way for doing so makes them exponentially worse. That is one thing that I can always offer on the helpline: the reassurance that survivors are not ‘weird’ or ‘bad’ or ‘mad’ or ‘wrong’, but that their experiences are entirely logical in the light of their previous trauma.
Sometimes survivors get in touch for help, advice or support as they tackle ‘the system’: be it the NHS, the Benefits Agency, employment law or the criminal justice system. This very often brings out strong feelings of powerlessness and helplessness, of being at the mercy of an unempathic, inflexible series of forms and protocols. When dissociative disorders are deemed not to exist, what do you write on the forms for Personal Independence Payments? How do you handle a meeting at work to discuss your sick leave, or need for additional support? What is the best way to report your abuse to the police? How do you present your situation to Children’s Social Care? At PODS we handle all of these kinds of enquiries, not just from survivors but from supporters, employers, ministers, social workers, and unions. The lack of understanding, firstly of mental health, then of trauma, and finally of dissociative disorders, leads to confusion and misunderstandings which can often be ameliorated by a straightforward explanation. I often use Carolyn Spring’s ‘Trauma Traffic Light’ concept to help people understand how survivors may react when triggered, and how to help them come out of the amber or red zone, back into the green zone. I have found that sometimes people are unsupportive of survivors simply because they feel powerless and overwhelmed—they don’t know what to say or do—and providing them with a simple framework for understanding trauma and dissociation can make the world of difference.
What really strikes me is the courage it takes for survivors, who have been multiply abused over many years, and some of whom are still experiencing abuse in its various forms, to get in touch in the first place. Many don’t know how to put into words their initial cry for help—sometimes we get very brief emails or voicemails simply saying, ‘Can you help?’ as that is all that people can manage. The fear of the disappointment of not being helped is too great, perhaps, to risk saying any more.
Many are evidently conflicted about getting in touch—parts, perhaps, who are desperate to reach out for help and support, disagreeing with parts who are terrified of getting into trouble, being thought of as a fraud, or being somehow too ‘needy’. Occasionally I receive ‘duplicate’ requests for help from the same person, who is unaware that other parts of the personality have already been in touch, although this happens surprisingly infrequently.
I love my job and feel privileged to do it. At the same time I feel the constant tension of never being able to help enough, and that there are too many people seeking help for a small organisation like ours to be able to adequately support. But I also know that when I feel overwhelmed, that is trauma speaking and that I can do something. Evidently, more needs to be done at the level of statutory services, which in turn need better funding from Government, but in the meantime, as a small charity funded almost entirely by our own activities, we do what we can and we hold the hope that real change, real recovery, with the right support, is possible.