The NHS is 70, as someone with a mental illness, I have some strong feels about that…
My occupational therapist looked exhausted, more exhausted than me, and I hadn’t slept in a week.
The first time I thought about killing myself I was nine years old. I was standing in front of the bathroom mirror holding my favourite teddy bear. I was desperately afraid. My journey to the mirror had begun seven months earlier when I developed a chronic fear of being sick in public. As the weeks rolled on, the fear of being sick grew into something more pervasive. I became terrified that I might harm someone, even though I didn’t want to. I would think about it every second of the day. I stopped sleeping and eating, I stopped playing with my friends, eventually, I stopped leaving the house altogether. I desperately wanted to tell mum, but I thought she would stop loving me. I remember feeling suffocated by the voices, on repeat, over and over. It wasn’t until last year that a psychiatrist told me I had been suffering from childhood obsessive-compulsive disorder. I was so relieved, as a part of me, even as an adult, had clung on to the idea that I was simply a bad kid.
I arrive back in front of the mirror aged sixteen. The intrusive thoughts had melted into chronic depression. Mum had become distinctly aware that she was losing her daughter to an invisible something. She called the emergency GP. The emergency GP told her it was a phase. Three weeks later my father walked out on us, never to return. Three weeks after that was my first adventure into mania and eventually psychosis. I was admitted to an adolescent psychiatric ward, adamant that I had access to an alternate reality which existed in parallel to our own, I had drawn hundreds of maps as proof of this reality, and I was keen (like, really keen) to show my discovery to the world. Ten weeks later, I was deemed well enough to no longer merit a bed. Mum and I had a single meeting with two social workers. This was the only aftercare we received, aside from being told that I needed regular check-ups with my GP. Mum was given a pamphlet entitled: ‘caring for a child with bipolar disorder’.
It’s 2013. I’m in another bathroom (I often wonder how much time people with mental illnesses spend in bathrooms) blood pouring from my wrists, surrounded by empty pill bottles and vomit. The ambulance and the police were outside ready to take me to A&E. I didn’t want to go, what I wanted was everyone to leave, and for me to play video games with my best friend Glen, who had found me. It was his face that pushed me to comply. I was stitched up, spent several nights on a ward, and then released back into the wild, apparently fixed and ready to go — actually I did feel rather fixed. In fact, I felt superb — so superb that I decided it would be a spectacular idea to move to Egypt. Which I did, rapidly. The eighteen months I spent in the middle east are a whirlwind of mania. I constructed an entirely false reality, of which I was the centre. I could solve all the problems! (bipolar is nothing short of theatrical). I was brought back to the UK and immediately sectioned.
Coming down from mania is not kind. Realising that the world that you have created is false, is a violent process. What follows are the feelings of guilt and shame, the recognition of the people you have hurt, and the actions you have committed. Not once has the system aided me through this transition. There is no middle ground. I have never seen the same psychiatrist for more than three months, they are passed around services, which causes a great deal of stress for patients. I have been issued medication where the side effects were so severe that my pancreas almost shut down, and most recently offered medication by a GP that would have actually escalated my episode. Therapy waiting lists are years long and are often short-term CBT. Consistent support is almost non-existent, no matter the chronic nature of an illness. There is a crisis safety net that clicks into action when an individual reaches critical. I cannot express how humiliating it is to find yourself repeatedly at square one. The entire process exacerbates the idea of failure and being a burden. Very recently I thought to myself, how am I back here again? How am I going to tell people I am back here again? I am so tired of being pushed to the point of crisis.
Against all advice, I started my PhD in October 2015. I felt like I was staring down the barrel of a gun, and I’m not going to lie, being a postgraduate with bipolar is close to impossible. I struggle. I am struggling now. I am not well. I am not well now. I am writing this, I think, because I am not well now. However, I’m one of the lucky ones, I have two supervisors who keep me afloat, who are supporting me in ways that are unimaginable. They have learned about bipolar, and are aware of the early warning signs, potential triggers, and behaviour patterns that are characteristic of the illness, often they notice my mood shifts before I do. They have become my constant in a life landscape where consistency has been non-existent. They have fought to keep me in the system. They are in close contact with my psychiatrists and social workers. They pick me up and brush me down, they care for me over and over again. If it wasn’t for them, I would have dropped out long ago, if it wasn’t for them, I’m unsure if I would be here at all.
Lucky, in this case, also translates to privileged. My supervisors are listened to, in part, because they are academics working at a Russell Group university. They learned long ago to introduce their title when speaking to psychiatrists. The three of us have access to resources to interrogate the drugs being offered to me so that when I enter an assessment, I am equipped with all the knowledge so as to make an informed decision over my care plan. As a white, middle-class service user, I am already ahead of the game, and yet the game has still stripped me of my dignity. I have been paralysed by this system, and I am experiencing the best of it. The vast majority are not.
As for academia post PhD, I don’t know if I will stay, not because I don’t want to, rather I don’t know if my illness will allow me too. The odds are stacked against me, and whether academics like it or not the university is no less forgiving towards mental illness than any other workplace, both in term of support and stigmatisation. The irony of it all is that people with mental illness are generally incredibly hard workers, we seize periods of wellness, and make the most of it. We are more empathetic on account of our disability, and more willing to assist others who are struggling at work. When in the light, we shine. However, I can’t answer the question: “where do you expect to be in five years time?” Because I simply don’t know. The line between wellness and illness in bipolar is razor thin. It ravages the body; my life expectancy is already 9 to 20 years lower than average. I see the reality of this when I go to my hospital appointments. Long-term inpatients who have been let down by the system over and over again, old before their years, slow and lethargic from drugs, shuffling, the light gone from their eyes. These are my people; this is easily my future. It is terrifying, and I am becoming increasingly agitated when people tell me that this is not a possible future of mine. Often I think that being in my 20’s, a postgrad, with an interest in art and fashion blinds people from the reality of it all. As it stands, society can place me in the mould of Silvia Plath, Virginia Woolf, Amy Winehouse — young, mad and passionate. This mould will crack when I hit my 40’s, my 50’s, my 60’s. mental illness stops being romantic when it is past its sell-by date
It is the NHS’s 70th birthday. It is an incredible service, one that I love and cherish, it must be maintained — but, as a service user, I cannot stress enough that it must not be maintained in its current form. I have been catastrophically let down by a system that was built to protect me, and I am angry. I am angry because I am chronically ill, but I still apologise to my care workers every time I see them, as I am acutely aware that my having a place in this system means that an individual who is just as chronically ill as me does not. I am angry because my access to this place, is in part because of my privilege, which means the NHS isn’t for all, it is only for some. I am angry because the system is so rotten, and that rot is forced onto those who work in it — via tick box forms, and one size fits all categories. I am angry that no one reads my notes, and that I am passed around like fodder. I am angry that there is a rehearsed script on how I need to “take myself along to A&E” if I am suicidal, and that script is read to me in a distant way because the speaker is exhausted, and I am the 10th person today they have told this to. I am angry because I am advised to download a mindfulness app, instead of receiving therapy. I am angry that no one ever tells me what is happening, and that the language they use is alienating and frightening. I am angry that my medication is constantly changing and it has harmed me. I am angry that being involved in this system since childhood, has traumatised me. I am angry that without the support of my supervisors I would be lost in this system. I am angry that the system places so much labour on carers, that the carers themselves become ill. I am angry that are no beds, no support networks. I am angry because I am sick and tired of being told by society that having a mental illness is the same as having a broken leg. It is not the same, not least because I would be better cared for if I had a broken leg.
I feel that as a service user, who has a platform to speak, it is important to articulate this anger. I want my experiences to make people feel uncomfortable because it shouldn’t just be service users and carers who are fighting this battle. It is not just our responsibility, one in four people suffer from a mental illness — how then has this been allowed to happen? People die because this has been allowed to happen. It is not enough to just attend a march, or ‘support’ the junior doctor strikes. If you want to help us, write to your MP, donate to mental health charities and organisations such as Mind and Time to Change, get involved in youth groups and educate young people on where to find help, go to council meeting and vote in officials who are going to benefit the system, and fight against those that don’t, become a mentor at your university, ask the person opposite you if they are doing okay. Don’t just be vocal, be active. The NHS needs sustenance if it is to survive and thrive, it needs more staff, more doctors, more psychiatrists, more researchers, it just needs more.
My story is not a pleasant one, it will likely not have a pleasant end. Others like me, do not have pleasant stories, and they too, will likely not have pleasant ends. What a terrible shame that is, what a terrible waste, how many stories do there have to be, I wonder, before people take notice. I am tired of collecting these stories, collecting these stories is tiring, when all I want, more than anything else in the world, is to feel safe and be well.