Interview by Carolyn Spring
Being on benefits wasn’t a choice I’d made and certainly not something I did willingly. From before the age of fourteen I’d always had a job, pausing only for maternity leave. But when my dissociated trauma burst onto the scene three years ago it became a massive achievement simply to stay alive. The reality of living life with dissociative identity disorder stopped me working and plunged me into this shame-
At the same time as my personal life was being turned upside down by flashbacks, switching and chronic unexplained pain, the benefits system itself has being undergoing some significant changes too with more yet to come. Incapacity Benefit has been replaced by Employment Support Allowance, all benefits are being subsumed into Universal Credit, and Disability Living Allowance is being replaced by Personal Independence Payments. It’s confusing, to say the least.
I had built a career working in schools with children with special needs but that came to an abrupt halt three years ago when my father received a lengthy custodial sentence for his abuse of me. I suppose I ought to have felt glad, or relieved, or victorious—after all, many people try to pursue justice for the abuse they’ve suffered and get nowhere at all. But the responsibility of putting my father in prison weighed heavily upon me and was compounded by the emotional and financial fall-
And then, bizarrely, just as the case concluded, I was at a staff party at which a colleague accidentally died. I was overwhelmed by the sudden influx of uniformed police; I felt I was to blame and I was bewildered by the public nature of everyone’s emotions. All of my defences, my get–through–it–no–matter–what sense of invulnerability, all suddenly collapsed. I had what many people would refer to as a breakdown, although at the time I didn’t call it anything. It was just the way it was.
I know it wasn’t long ago and yet somehow I can’t really remember what happened for the first three months of that year. I know I wasn’t coping and I know I went to Social Services for some help with my kids. The holidays were looming and, without any other support from family or friends, I needed some help to get me through, especially as my youngest has special needs. It’s the right thing to do, in that situation, to ask for help. And because it’s the right thing to do, the right thing will happen—right? Wrong. All of a sudden I was embroiled in a child protection investigation and instead of being supported with some child-
I did, eventually, win the battle to keep my kids, although with fairly onerous restrictions which still affect me to this day. But the one thing that I couldn’t hold together, on top of all that chaos, was my career. At the best of times it had been demanding to work with special needs kids all day, even though I loved it. But it was impossible to cope as my father acclimatised to prison and social workers were quizzing me about our family life. At the same time, I was beginning to become aware that there were multiple versions of myself sliding in and out of each other. An assessment and a diagnosis of DID was the final straw and I had to go off work on long-
Once my Statutory Sick Pay ended, there was the 50-
The problem was that the form was encouraging me to whine. ‘Poor Rachel, whingeing about how hard her life is!’ The mocking voice was hard to ignore. I wasn’t supposed to complain. I was supposed to just put up with things. That’s how it had always been when I was a child, during the abuse. It felt like a massive trick that I now was supposed to write down, in black and white, that I had problems. ‘You’re going to get someone in trouble now.’ By detailing my symptoms, my difficulties, by trying to back them up with evidence, it felt a lot like the police investigation and that had cost me a great deal of trouble. ‘They’re going to take your kids away if you say you’re poorly.’ That was probably the hardest voice to overcome. And as a result, on that initial form, I biased my answers towards the wrong audience: I was writing for Social Services, not the Benefits Agency.
What date did your illness or disability start? What was I supposed to say in response to that?! I erred on the side of caution because I was afraid of lying but I really didn’t know what to say. Did DID start at birth, or when I was four, or did it all just start three years ago? Without an easily recognisable diagnosis—such as a neck injury sustained in a car crash on an always-
All the ridiculous questions that don’t fit any mental health condition, let alone one as slippery and unquantifiable as DID. All the concentration. All the interpretation. All the fear. I would write the answers to a few questions and then, overwhelmed with shame for finding it so difficult, I would go and self-
One of the enduring physical problems I’ve had has been pain in the pelvic area. It got so bad that I did eventually manage to force myself to see the GP. I was sent for an x-
A stupid length of time after I submitted my 50-
In a fog, I went to the assessment, to a huge, imposing Government building 25 miles from home. I was spacey, hyperalert, jumpy, switchy. I went alone because I had no one to support me. A dozen people were already squashed into the waiting room when I arrived. There was a Perspex screen between us and the staff, with large, threatening notices about all the things we weren’t allowed to do. The ‘them and us’ element, the power imbalance, the ‘guilty under proven innocent’—it all felt very shaming. I had a sense of being sat outside the Headmaster’s office, waiting to discover my fate for something that I didn’t remember having done.
I didn’t realise that the assessment started the moment I was called through: how easily I got up from the chair, how I walked, how I followed instructions. But they didn’t account for the fact that I’d switched to an ‘Apparently Normality Personality’ who has absolutely no connection at all to my body or its pain. Just do what you’re told, don’t cause a fuss, don’t lie, don’t exaggerate, don’t complain, be a good girl. There was a lot going off in my head—dynamics that the assessor was completely unaware of, but which meant that I did everything the exact wrong way to ‘pass’ the assessment.
I hated being looked at, which triggered memories of the abuse. ‘Stand up…sit down…do this…do that…raise your leg…raise your arm …’ I did what I was told, robotically. She asked questions. I was screaming in the back of my head but my competent unemotional part mostly mumbled the answers: ‘Don’t know.’ The problem with ‘Don’t know’ is that, like the UK at the Eurovision Song Content, it scores nil point. When I couldn’t even muster a ‘Don’t know’, she just stared at me silently until I did say something. I panicked, desperately searching her face for clues to the right answer, but she gave nothing away and her blankness triggered me more.
I did everything she told me to do, even though it hurt. I didn’t vocalise my pain because as a child I had been taught not to. But she marked her score sheet as ‘able to move without pain’ because I was silent. I spoke ‘competently’ about my mental health problems, doing my best to make eye contact (‘Just act normal!’ shouted the voice in my head) and so the assessment declared me fit to work with ‘mental health in the normal range.’ According to the report, my mental health does not adversely affect me either in my personal life or in my capacity to work. My physical symptoms are insignificant and unlikely to have any impact on my ability to work. I scored nil point.
Three weeks later I received a letter saying that my benefits were being stopped. At first I was utterly bewildered. Everything I had written on those 50 pages of the form was deemed irrelevant and untrue because a stony-
At that moment, I again fell apart. There was two weeks from when the decision letter was sent—sent, not received—for me to appeal. So I had very little time to recover from my crisis and get my front brain back online. I was beset with anxiety about how I was going to pay the bills and put food on the table. And then I had to start the process of collating even more ‘documentary evidence’—from my therapist, from PODS, from the Pottergate Centre, from my GP. It was the last thing I felt capable of doing but it had to be done. How could I explain the fluctuating nature of dissociative symptoms, the agony of body memories, the impossibility of sleep?
The appeal process went on for an age. Again my claim was rejected but when I appealed a second time my case was sent to tribunal. But life went into limbo. My benefits had been cut down to the appeal rate, which was half of what I should have been receiving and much less than I needed. As a family we lived on the most meagre of meals, had no winter coats and walked around with holes in our shoes. My appeal was rejected in November and it was July before the tribunal date came: eight months of running up debts with our utility companies and being stuck in the powerlessness of poverty.
The tribunal was over 30 miles away and I knew I couldn’t manage it alone. None of my family were willing or able to assist me but I had managed to engage a solicitor via the Legal Aid scheme, who was supposed to give me just two hours of free advice and then present my case in writing. She wasn’t paid to attend the tribunal with me but she did anyway, in her own time. I was also supported by someone from PODS. Not surprisingly my memory for that day is vague. I remember an admin lady saying to me, somewhat patronisingly, ‘Don’t look so worried!’ but I was too far outside my window of tolerance to do anything about it. A selection of my alter personalities came and went in the waiting room and I just about managed for an ‘Apparently Normal’ part of me to go into the room when my case was called.
This was a formal legal hearing: I sat between my solicitor and my PODS supporter, opposite the barrister and a doctor. I was expecting to be quizzed on the nature of my mental health problems and was concerned that DID would be rejected as ‘not existing’. But my solicitor fought for me on the basis of physical difficulties that I was deeply ashamed of and which hadn’t even occurred to me to mention earlier: my inability at times to control my bladder when I switched to one particular traumatised part. I cringed with the shame of it but the response from the barrister and doctor was compassionate, even humane. They believed me. They understood at least the basics of DID and concluded that I was currently unfit to work. My appeal was granted and I was placed in the support group for at least two years. Game over: we had won.
Or so we thought. Being driven back home, we talked about things I would do differently next time: gear my answers towards the benefits system and not Social Services; take a supporter with me to the assessment in order to speak on my behalf to avoid the silent compliance and mumbled don’t–knows; take some quick notes with me to prompt my triggered brain when it unfortunately ‘forgets’ the facts of my impairments. But doubt lingered in the back of my mind that things would go right for me now. Could it really mean that my benefits would be immediately reinstated and I would receive a back payment for the last eight months?
It didn’t take long for the next wave to hit. The barrister and the doctor might have been lovely, compassionate human beings but the ‘system’ was still a bully and still, it seemed, didn’t want to let me just get on and focus on recovery. I had arrived home clutching my award notice from the tribunal but three days later I received in the post a letter stating that I was being investigated for benefit fraud and that I was going to be summoned to a joint meeting between the Benefits Agency and the police.
That was always the story of my childhood: beware something good because it will be followed by something bad. And here it was and I wished I’d never appealed. The next few weeks passed in a flurry of phone calls and letters and very, very mixed messages. If found guilty, I may receive a custodial sentence. No, the worst case scenario was to repay all the benefits I had received for the last two years and be prevented for claiming again for another two years. And, to top it off, my benefits would again be stopped while the investigation was being carried out.
Once more I was powerless. And I was the bad one. How could this be happening again? Was I cursed? It seemed that the back payment I was owed had automatically triggered a review of my files and they had trawled back through all my claims looking for any kind of discrepancy that might now save them money. And they found one. Right back at the start of my breakdown, in the three months where I didn’t and I still don’t know what was going on, the Benefits Agency said that I had worked two hours too many one month and that my entire claim was therefore invalid.
Months of wrangling and anxiety ensued. The police called off their threat and it was kept as a civil matter only. But again the onus was on me to prove that I was innocent in order to overturn the decision of these ‘big people’. Again I was triggered by the whole thing, found it nearly impossible to respond to their letters on time and in the right way and as a family we sank into even greater debt. On a weekly basis we agonised over our shopping list. The cheap packets of mince had nearly doubled in price whilst also shrinking in size: meat once a fortnight it was then.
I doubted my reality. In desperation I traced back the time line of events after my father had gone to prison. At what point did I actually stop work? I found letters I’d written when I stopped claiming tax credits. I tried to untangle the weeks of when I was in work, when I wasn’t, when I’d tried to go back and after two days couldn’t manage it, and what happened next. Letters from the benefits people accused me of fraudulently claiming not to be working when I was, in the February of the year of my breakdown. I couldn’t remember. I simply couldn’t remember. But how could I possibly have been working then? After the kids left for school on a morning I would sit and stare at the walls in impotent immobility all day. Days on end disappeared in a dissociative haze. How could I have been working? But maybe I had. Maybe I had switched to another part and they had gone to work. It messed with my head and made me feel psychotic.
It took weeks to summon the courage to phone my old boss. I was terrified that she would agree with the benefits people and conclude that I was a fraud and a cheat. I was ashamed at having to explain to her why I needed to know. The Borough Council had ‘confirmed’ to the benefits people that I had been working, so it must be me that was wrong: I was always wrong about something. But eventually, after rounds of excuses and avoidance, I spoke to her. ‘No of course you weren’t working then!’ she said, in a bruisingly forthright way. ‘You weren’t coping at all. I remember it very clearly. And it’s here in my diary… We had a meeting on the Thursday… I’ll write you a letter. They’ve made a mistake, Rachel—it’s not you.’
Big sighs. And big fears. Because every time something goes right, something goes wrong, right? I gathered together all the last pieces of ‘documentary evidence’ I could, including the letter from my boss. I submitted it. There was a hiccup when the benefits people claimed that they hadn’t received it—how I wish I’d done everything by signed-
Or is it? If I don’t receive the back-
I am seriously unwell, grappling with the legacy of a childhood of abuse. I want to get better and so I am paying for therapy privately because what I was offered on the NHS is not suitable for DID. I was given the chance to live in a ‘therapeutic community’ but when I turned it down because I wanted to continue to be a mother to my two children, I was discharged with no further treatment. Life is a continual battle. It’s hard enough living with DID—a condition that so many people refuse to accept even exists—but it’s doubly hard when you’re accused of fraud and denied the right to feed your kids. Surely the benefits system is supposed to give you a hand up when you’re struggling, not crush you when you’re down? I can’t help but feel that the same problems in society that allow child abuse to flourish are also responsible for the poor state of our mental health care as well as this punitive, shaming benefits system. It feels like it’s rotten at its core.
I’ve written this because I know that I am not alone in the experiences I’ve had. I want to validate other people’s struggles and say, ‘It’s not you—it’s the system. You’re not bad—it’s the system.’ I’m hoping that my benefits will be reinstated in time for Christmas and that maybe even the repayment will come too. I’m grateful for the hamper from the Food Bank but it would be nice to have the heating on too. And then I’d like to focus on recovering from DID, not just trying to stay alive. One of the mantras in therapy is always ‘it’s not happening now’ and ‘the abuse is over’. It’s true that the sexual abuse is over, and I’m grateful for that. But in many ways ‘it’ is still happening now. I still feel that my recovery is hampered because I’m on guard for the big bullies of the benefits system and I can’t quite trust yet that bad stuff won’t happen. And I think that’s true for many of us.