CW: food, eating, eating disorders, disordered eating, weight, body image
TW: mental illness, psychiatric services
Every so often you’ll see me howl into the wind because there’s a Bank Holiday weekend coming up. At the moment, I’m faced with a 6-day weekend because my employer has given us today and Tuesday off work too. This is annoying for me because I need decisions to be made about my furlough, but there we are. But in terms of the work I do this doesn’t really affect me – I can work or not work, but also take time off another day if that suits me. My job is pretty flexible like that. So why the hell do I care about whether it’s a bank holiday or not?
I care because in 2016 I was very, very poorly and under the Community Mental Health Team. They work 9-5 Monday to Friday (minus bank holidays) because of course, you stop being mental at 5pm and only need to engage with them when the clock hits 9 in the morning. Normal weekends were enough of a struggle – no access to GP, no access to CMHT, no access to my therapist at the Maudsley…add on an extra bank holiday Monday to that (and a Friday too if we’re talking Easter) and bam. And, on such holiday weekends social support largely disappears – friends are (understandably) off spending time with their families, not on social media etc. Christmas is the biggest flashpoint for this sort of thing. I see Christmas as a Rorschach test for how I am – if I’m well and stable it is great. When I was ill it was the worst imaginable. This is why I open my DMs every Christmas day, for people who might be wanting a private chat. It’s the very bloody least I can do. I, of course, am not a medical professional and can only do or say so much. And of course, these kinds of holidays are also a time when there’s an expectation that everyone be happy and in celebratory mode. That’s very very hard for those of us struggling – I managed this for short periods with my niece and nephew the Christmas I started getting ill, but it’s exhausting pretending you are OK when you are not.
So, what options are there for people in crisis out-of-hours? Well, there’s the Samaritans. I will reserve my rant about my own experiences telephoning them, and simply say that they are good for some people, but not a replacement for medical services. Moreover, they’re a listening service. They don’t give advice, signpost elsewhere, or even call the police if you’ve said you’ve taken an overdose without your consent. This troubles me, but I understand it’s complex.
A&E, therefore, is really the only option in a crisis, unless you’re under a Home Treatment Team who come every day, rain or shine (those on weekend or bank holiday shifts will often let you know how cross they are about it though). We’re pretty much always made to feel like timewasters for going to A&E, we wait for hours, to be told to stop attention-seeking and go home. I’ve had one (1) A&E consultant psychiatrist take one look at me after I’d been sitting there all day, my partner trying to get me to stop hurting myself since we’d arrived mid-morning. This consultant fought so, so hard for me to be admitted. 14 January 2017, it was. It’s an exception that proves the rule. Really, though, this is it. That’s all there is. It’s the reason I laugh when people just trot out ‘ask for help!’. Because there’s precious little during the hours of 9-5 Monday to Friday, let alone at weekends. So a four-day weekend is just torture.
Bank Holidays are hardly a ‘day off for everyone no matter what’ amazing social leveller either. In normal times, retail, ancillary and hospitality staff all have to work – my brother-in-law used to get up at 4am on Boxing Day because he works at a retailer and the sales are insane. Nurses and doctors in inpatient settings have to work. I’ve also a friend who works in IT for an investment bank, who says it’s the worst ever day for those who have to cover, because there are fewer staff and other countries are often operating as normal. The irony of calling it a bank holiday, eh.
So what solution do I propose? Simply give everybody 8 days special holiday a year, to take as and when they like. People might choose to take Good Friday and Bank Holiday Monday, Christmas Day and Boxing Day, or not. This way services are covered. I really don’t think this is a controversial idea.
Maybe we can do the same with weekends at some point.
Content warning: references to mental inpatient settings and suicide (though not in detail)
It is winter, but every single room on the ward is boiling hot. We can open the windows, but a dense grid covers them: and of course the glass is unbreakable. I know this because I’ve tried to break it, several times, with a chair I’ve taken from the dining area. If I can just smash the window, I can jump, and maybe I’ll die. But this all happened before I got sectioned; now I have to be really careful, because I could be stuck in here until summer. That’s what the letter I got said: you are under detention until August 2nd 2017. Any time I try anything I’m put back on 1:1 supervision which means not even going to the toilet by myself. I would also have to shower in front of female staff, if I could be bothered to shower.
I wake up most mornings at 5.30am or thereabouts – after they section me they take my phone away from me and I’m only allowed it for short periods under supervision, and my watch isn’t with me, so I’ve no real idea of the time. I usually need a wee, so I get up, bare-footed, and pad to the bathroom next door. Avoiding the wet patches, I sit on the toilet which is weirdly too high for me, so my feet dangle above the floor. I go back to bed – we have a single bed with a thin mattress, a sheet, a foam pillow and a blanket. My pillow case got confiscated as a ligature risk at some point and I didn’t get it back. So my pillow is just foam. I discarded my blanket weeks ago because it’s so hot and sleep under the sheet alone. My hospital-issue pyjamas are too long for me and the bottoms are dirty from pacing.
I put my eye-mask back on and earplugs back in. When you have a window on your door with a view panel that’s opened hourly throughout the night and the lights turned on to check you’ve not topped yourself, you soon come to discover the essential nature of the eye mask. I lie awake in bed and try and quell the rising anxiety of having to get through another day of this. At 8am the day staff, who began handover at 7am, will bang on my door to get me up: I usually force myself to the shabby dining room and eat two slices of cardboard toast. Because I can’t convince them to let me out if I don’t pretend I’m getting better, right? I have to pretend, or they won’t let me out, and then I can’t die.
Sometimes they have little heart-shaped sachets of Marmite at breakfast; nobody else seems to like it on the ward so I always have that if it’s there. It’s a very small ray of hope and familiarity for me. Orange juice as well; but only one glass, that’s all we’re allowed. The knives are plastic and hard to spread toast with. Then we have to queue for medication: two nurses are dishing out inside the meds room, with the hatch door firmly locked at the bottom. They hand each person their meds as they come to the door and watch them swallow. I have to do this four times a day because as well as my morning meds I am on Promethazine which is meant to calm me down but seems to do very little.
Then the pacing begins. The only thing to do on the ward if you’ve not brought it in, really, is telly. The TV is invariably spewing out chart hits: Ed Sheeran has three top ten singles doing the rounds at the moment, and Clean Bandit seem to be on a lot. This is not good. However, Touch by Little Mix and Work From Home by Fifth Harmony aren’t bad. Anyway, that’s all there is really. So I pace. Up the corridor past my room and up to the end, where a little cluster of rooms completes the head of the corridor, back down into the main living area. Then up the other, almost identical, corridor which is at a right-angle to mine, and back down. I do this pretty much all the time, checking the clock each time as I go through. Each minute that passes is another minute less of hell, a minute nearer to getting out and being able to die.
Technically, there is an Occupational Therapy activity every day. This is of course not something you can get too in-depth with for everyone’s interests on an acute ward. Mondays is smoothie making. Tuesdays is art. Fridays is jewellery making. And once a week a lovely lady called Harriet from the Red Cross comes in to give us free hand arm and neck massages. I like her a lot I and usually have one, but can normally only sit still for five minutes before I leap up and tell her I need to end the session now as I have to pace. I am really not very well. But I’ve had some of a massage, which is good, because that’s convincing the nurses I’m getting better, so they will let me out, and I can die.
At midday it’s lunch, though we have to be given numbered cards before the hatch is opened so we take it in turns. There can be fist fights otherwise. If I can face lunch, I try and get in there early as alongside the invariable slop there are usually one or two jacket potatoes and a pot of tuna mayonnaise. This is the motherlode in terms of ward meals. There are people I get on with on the ward OK enough and we will sit together if we can but people come and go and alliances are made and broken because it’s like being at primary school again. Sometimes people need to be kept apart physically: my pal throws a plate of bolognese over another patient at one point because very poorly people can say all sorts of things they might not say when well. Many patients only wake up to get meals, and then go back to their rooms to sleep. Their meds make them both exhausted and hungry. I always try my best, because I’m trying to convince them I’m better, so I can get out, and die.
Sometimes visitors come in the afternoon, but I’m not allowed any now apart from Simon. Some people get none. I am also lucky because the ward psychologist sees me twice a week after lunch and she’s so very nice. She’s Danish, and extremely kind. Because I don’t yet have unescorted leave, she often takes me to Ruskin Park for some fresh air. I’m so scared to be outside anyway so I feel like I need her with me. Then I might go back to pacing on the ward. My magical thinking is really bad too: I’m exhausted with trying to predict the future based on the random occurrences around me. ‘If that’s Tiffany coming out of the bathroom, then everything is gonna be OK’. If it’s not Tiffany, I become very anxious. If it is, I find something else totally random to obsess about. Out-of-control OCD is really tiring.
Sometimes in the afternoon I try and do some colouring in or writing, but it’s so hard. I don’t care, I can’t focus. And anyway I’m just trying to make them THINK I am getting better. Once I’ve tricked them, I can get out, and die.
Mondays and Thursdays is Ward Round. This is when we all sit and wait to see which of us the ward consultant will deign to call in to see her. We all, universally, loathe her. She runs the ward like the worst sort of medieval king – the one who won’t take any advice – and thinks herself accountable to nobody. But I have to convince her I’m getting better because she is the one who has complete power over whether I stay or go, so I make sure I’ve put clothes on. Brush my hair. But I don’t want to overdo it, so I’m careful not to exaggerate, because if they realise I’m lying about how much better I’m doing, they won’t let me out, so I can die.
Dinner is at 6. It’s without exception horrible, whatever it is. I force myself to eat it when I can, and, without fail, Simon comes to visit afterwards when he’s finished work. He is allowed more and more time with me as days go past – and after a little while he can take me out to the pub so I get to the stage of missing dinner completely and coming back for pudding. The puddings are the one thing I like on the ward. Usually because they’re slathered in custard. But also I need to convince them I’m getting better so I can get out of the ward, and die. And eating pudding seems like something people who want to live would do.
Nighttime meds are 9 and I go to bed as soon as I can to try and escape the horrors of being alive for a few hours.
At some point I discover reading and things change quite rapidly. I’m released from section on 23 March 2017.
All my efforts to do things to convince them to let me go so I can die have actually had the result of getting me through the very worst and now I’m leaving the ward. So I can live.
Sherrill is a brilliant comrade and a constant voice of common sense. I am so glad for her endorsement.
I am an admirer of Jo’s bravery. She is willing to be up front and open in a way that I have envied, not just about her opinions but also about her struggles. Her bravery has made me willing to be a bit more open myself. Her willingness to be open about things we should discuss more is just what we need in the union executive, and especially as women’s representative. The union has been changing since the 2018 strikes, and it is important to have increased voices from those who are not part of the historical factions. I joined the union upon arriving in the UK in 2005. Some good work was done by a small group of dedicated people during the ‘hard years” before the 2018 strike. But with the broader mobilization since 2018, it is now important to channel the new vibrant energy from the real and virtual pickets into the union governing structures.
I have learned a great deal from Jo on how language should be carefully considered – she has been especially vocal in opposing language harmful to those with difficult mental health experiences. I have had to reflect more than once on how I was using such language, and addressing some of my own problematic thinking. It is also great to have Jo as one of the strong voices supporting trans rights, speaking plain common sense. There is no doubt that her openness and willingness to challenge language and thinking will be an asset on the executive, and we are fortunate she has decided to put herself forward.
Becca is an absolutely amazing voice for disabled and neurodiverse academics; as well as the extremely important work she does in her day job representing those most disadvantaged at employment tribunals.
I’m a PhD Student at University of Leeds researching disability employment law and in my day job I represent disabled people bringing discrimination claims in the Employment Tribunal, many of them academics fighting discrimination from universities. I ‘met’ Jo while shouting into the Twitter void, where we share similar passions for disability justice, trans inclusion and improving working conditions in academia.
Jo’s honesty, openness and unwavering commitment to deep inclusion and equality at the structural level will help bring the voices of those being crushed by the current trends in higher education to NEC. Never one to shy away from difficult conversations or to be swayed by vanity projects, Jo’s lived experience of the pressing issues of disability, mental ill health and precarity in academia will ensure these concerns are considered in terms of their messy, human reality and not as some short-lived campaign that fails to challenge the systemic and intersectional nature of these issues. Jo’s willingness to challenge demands from certain corners of the sector to tolerate their intolerance & prejudice toward trans people shows me that, if elected to NEC, she will stand for fairness, inclusion and equality. For all these reasons, I would urge you to vote for Jo.
Hope has consistently impressed me with her openness and kindness; she is a fabulous scholar and I’m grateful for her endorsement.
I am endorsing Jo Edge for NEC. Jo and I first corresponded via Twitter due to our shared concerns and experiences with the inadequate and superficial nature of mental healthcare, both in HE and in general. Often initiatives around ‘wellbeing’ in the academy and beyond do little to help those with chronic conditions and symptoms outside normalised ideas of anxiety and depression. Jo’s voice and experience is vital to improving the conditions for those with mental illnesses who have been constantly misunderstood and marginalised in favour of quick-fix solutions that perpetuate a harmfully narrow view of what mental illnesses are and how those living with them can be cared for.
Jo’s commitment to trans rights is important and necessary in an environment where ‘gender critical’ arguments, particularly among academics, are promoting hostility against— and increasing the vulnerability of— the trans community. Jo’s constant honesty and commitment to confronting injustice wherever she can makes me confident she will be an extremely valued and trustworthy NEC women’s representative.
Cleo is a very long-standing friend. I can’t believe it’s been so long! I’m so very proud of her, in all the ways.
I first met Jo in a loud, sweaty, crowded music venue in Oxford nearly 20 years ago. Many similar occasions followed. Later we worked together at the County Council, dealing with student loans. And, latterly, we have intersected via our shared interest in the medical humanities and our desire to put the world to rights.
Jo is one of the most kind, honest, and dedicated people I know. She works hard to improve the lives of others, through advocacy, visibility, and her ability to listen actively and without judgment. She is open about the fact that she has endured (and is still enduring) a string of fixed-term contracts and chronic mental illness, so she is able to speak and act from experience when supporting precariously employed and disabled colleagues. But she doesn’t just advocate for others like her. The most wonderful thing about Jo is her overt commitment to supporting all women: women without and with children, trans women and cis women, women with and without disabilities. I have every confidence that Jo will be an effective, trustworthy, and caring member of the NEC. Thus, I am delighted to be endorsing her for one of three Women’s Reps positions.
Fearless PhD students like James give me hope for the future of our sector. He always stands up for those more vulnerable. Thank you, James!
I’m endorsing Jo Edge for NEC for a host of reasons, but primarily because of her unwavering support and advocacy for trans, non-binary and gender diverse union members, students, and others working in the sector. In my research with young trans people, I’ve seen first hand the real, lived costs that come about when trans people are subjugated and marginalised. Some people working in HE are currently aiming to dismantle trans rights, and are presenting their views as falling under legitimate ‘academic freedom’. I know that Jo wholeheartedly contests this narrative and discourse, and stands on a platform of supporting all women, whether trans or cis. Her plans to consult with trans members leaves her placed to deliver change for trans people, particularly trans women and non-binary folk, within the Union and in relation to its structures, causes, fights, and beyond.
Jo is an early career researcher who has been open and honest about her precarity and experience of mental ill health. Jo will use her lived experience to understand the views and concerns of the Union’s most marginalised members, and I know she will campaign to ensure that they are represented. Jo will work with all women members of the Union to unpick the misogyny, transmisogyny, misogynoir, and cissexism experienced across the sector
So pleased to have this endorsement from fellow disabled academic and dog enthusiast Emma, who has only just escaped precarity herself. She is an important voice in disability studies and we need more like her.
I’m endorsing Jo Edge for NEC because she is genuinely passionate about the role of precarious academics and support staff in the union – and her experience of precarity makes her voice essential in future discussions. In addition, Jo’s vocal support for engaging deeply with complex mental health needs in the academy has been hugely inspiring, and I feel her work in this area is a necessity – and something UCU desperately needs.
Had such fun doing a teach-out on mental health and illness with Lawrence during the December strikes (even if I was doped up on co-codamol!) and we look forward to doing another event together before my contract expires in May. Lawrence is a really valuable member of our branch exec. and an all-round good egg.
I fully endorse Jo Edge as she has a passion and keen interest in supporting members of the UCU who have a mental illness. I have worked with Jo during the November and December industrial action at Manchester when we designed and delivered a successful teach out session about mental health and illness. Jo wants the UCU to develop the breadth and depth of support it can offer both nationally and locally to members who have mental health problems. These problems can be prompted by undue stresses at work. There are also many colleagues in HE who have to endure long term problems not primarily prompted by the working environment but prove very difficult to manage without good support.