Hello there. I'm posting my story I wish to share with you, it's very personal. I hope by speaking from my heart and soul I can contribute to the current debate on the issues of stigma, and the politics around work and mental illness. It is extremely honest because I think it needs to be to make the points I hope to make.
My work story
I am a 44 year old woman, working as a Clinical Technologist within the Clinical Engineering Department at a hospital. I have a responsible job, running the Equipment Loan Service, each afternoon Monday to Friday. This service runs as a library, which involves collecting expensive pain relief equipment, volumetric pumps for patients receiving medication in fluid form and other vital medical equipment. I collect from ward's, clean, check, test and return items as well as booking out, delivering and resolving inquires from patients, senior and healthcare staff. I work within a small friendly team. Everyone including me gives the work 100%. Beforehand I worked at the hospital for three years, as a housekeeper. As well as a social care worker with an agency.
I maintain my job well, rarely having time off, other than bouts of flu and special bereavement leave, after losing my mother last year. However my home life is shambolic. Looking around, as I am writing this in the morning. I am surrounded by mess and clutter, there is a huge pile of stuff in boxes behind the door and every surface is briming over with stuff. I have a bit of left over Christmas cake in the fridge and some milk. So nothing for breakfast as usual, except some chocolate decorations, 3 cups of tea, a coffee and a few cigarettes is what I'm going to work on.
My entire flat is packed to the rafters with clutter. I am going to iron my uniform now and feeling horrible, tired, anxious, depressed and a touch of looming dread. I am not at all eager to start getting ready, stepping over things to get to the ironing board. Everything is hard and difficult, even the simplest thing. Really really just want to sleep and I'm hungry without appetite, so feel I am running on empty.
The answer would be to sort it all out, my landlord is quite tough on me and my partner about the mess and clutter, it is very stressful. The reason I live with this situation, all my life infact, is because of several factors. Firstly, I never learned even the most basic housekeeping routines. My mother was seriously depressed, as long as I can remember and relied heavily on alcohol. We lived in abject squalor, no exaggeration. I had ingrained dirt in my heels, matted knots in my hair. When lifting a bin to take down, from the large pile of rotting bags, from my childhood, there were maggots and blue bottles buzzed around the light fitting. These was an emense amount of stuff, never any food, my sibling and myself were always starving and I was continuously depressed and aggressive. I was bullied and hated on at school for some years. People often remarked how bad I smelled, rarely did any one sit next to me in class and teachers were often cruel.
Through much study I learned housework theory that it's habits, you learn overtime by doing a little everyday. Applying it is a different matter. Another factor contributing to my slovenly ways, is this;
In my 20s I was diagnosed with schizophrenia, along with the hoarding, collecting stuff and not believing I could get rid of anything or how to let go. I suffered extreme apathy. I was barely motivated to do the slightest thing. So I accumulated a lot of stuff, I didn't know what to do with and still don't know. I never learned to look after my physical needs, which I understand are vital to well being.
Unlike common preconceptions of how people can like living like that or they would do something about it. I haven't, or ever liked it. It's like a crushing defeat, hopeless and intolerable. It creates the mindset of utter darkness and despair. I have spent my life trying to obtain comfort, by organising and housework and sheer hard work i haven't got past the first square of this snakes and ladders board. It is demoralizing. I have thrown out and given away masses of stuff and repeatedly tackled marathon herculean cleaning and tidying sessions for myself and my mum. It is depressing scrubbing congealed, soild fat, splattered over a cooker wall for hours. Sifting through piles of small objects, with money and sentimental objects mixed in with rubbish odds and ends. My patience is all but finished with card board boxes, filled with a mis-mash of precious items, photos, miscellaneous objects, rubbish, important paperwork and some expensive things, too good to throw away. So sick and tired of this losing battle.
Along with the effect of the negative symptoms is schizophrenia ie lack of motivation, lack of concentration and flattening). Is why I'm literally in a mess, not from a want of trying.
As you can imagine having people visit is a problem, very stressful, hardwork and avoided when possible. As a child I had social workers in and out of our lives. Standing in the doorway, with shock and horror over their faces, passing judgements and drawing up rotas, although my mum was rarely sober.
I was judged not only at home, at school but every time I stepped out of the door. I learned to hate myself, the maisonette, school, everything really and throughly. I was wanting and craving something all the time food, toys etc etc.
As a teenager I self harmed, drank myself unconscious, slept around was anti social, raising hell for those around me.
The reason I felt it is important to describe my background, is because I want to explain how working has changed my life.
For me the most profound effect is a shift of perspective and deeper insight and in practical terms, there are vast improvements.
Working for the past few years have been the last pieces of the puzzle of this particular leg of my journey. I feel what I have learned from working has illuminated areas in my history I didn't understand. Although confused and consequently directionless and powerless, because of a lack of awareness and knowledge.
You could say this was because I was naive. I suffered a lot because of my circumstances as well as struggling the torments of psychosis. I was totally encapsulated in a nightmarish interior world with demons, angels, conspiracies. And extremes of mood high and low. And utter emptiness, impoverished thought and misery. It is since working, the fog cleared and I could see the world around me. I used mental health services for many years and had no idea what was going on in the world. I look back and think I was totally in the dark. I have learned so much from people out in society, working to hold it all together. With due respect I want to illustrate how the wider world looks from here.
I have always been at the brunt of societies disapproval. I can understand the reasoning, I don't want to seem complaining, just reflect back what I experienced. As a child I was unacceptable and called a tramp, as a teenager I was critised as wild, anti social, a problem and as an adult with schizophrenia my behaviour has been labelled weird and bizarre.
Up until fairly recently I suffered with that marginalisation. Working has made me mentally and stronger physically. When I was ill I slept a lot, untill evening and went to bed in the morning for some years. In winter I hardly saw daylight. I detest waking up, it is a dark time for me. Sleep was a respite from the mental pain. Although the mental pain when I get up hasn't changed, I get up at 6-7am for work. I am more confident around people, when before I was terrified.
The pieces of puzzle I referred to, the shift in perception and deeper insight comes largely from being around people in work environments, taking public transport, the everyday struggle to do what you got to do. Conversations other than mental health.
I realised that the conversations I had in work were very different than in mental health services. I understand it has a lot to do with appropriate work place talk. A lot more on the surface, light banter. Although I am keenly aware, in general talk that stigma runs very deep and not far from the surface. Even throw away comments I feel keenly on the topics of people and situations related to anti social behaviour, drug and alcohol abuse, homelessness, benefit claimants for example. I see similar opinions in the wider society. It pervasive in this culture. That is to condemn, judge and oppose anything and anyone considered descructive towards society.
Almost everyone I can say is nice and good to be around and I understand people have to conform to societies standards without which things would soon desend towards chaos. We need utilities, transport, taxes to be paid, to benefit the majority in a democratic society. I gratefully acknowledge this. Although it strikes me that there is common group mentally. It's makes common sense to keep your home clean and tidy otherwise it becomes a health hazard affecting people and we all got to live with each other. The penny dropped for me and the pieces came together. Mouth agape in disbelief I hadn't realised so many people were that strident about housework. And made sense why I was an outcast. This applies to all my other social failures. I was too busy suffering with the situations and blaming myself to really understand or know what the wider world thought about people like me.
I believe people are inheritly good natured and co operative, within context, or framework. If something or someone challenges that order or structure, like me as a trampy child or behaving bizarrely in a social context, people react to maintain the status quo. I understand it as the duel nature of people. Consequently I have learned a lot about the myself and people's and societies boundaries. I think I have become well rounded and tolerant person.
I spent years recovering, it was through sheer determination and slow painful hard work just to function fairly decently. I have the 13 years out of work not including time spent at university, struggling and battling to get to this point, which may seem unremarkable. It is so disheartening to be judged as a benefit scrounger by the news papers and those who read them. When I have battled just to stay alive and take myself out of the healthcare system, because I didn't want to burden anyone.
All that is valued in society work, status, money, family, material goods are things I always aspired to achieving in some way. Like nearly everyone else. Because those things have been so unattainable to me. What society is offering and can be attained through work. Appears to me as higher realm, an ideal construct or system applying to everyone, we all have to play by the unwritten rules if we want to fit in and achieve. It looks like a daily game that everyone has to play, only showing your good side. I have run the gauntlet completed the tasks and climbed the mountain only to discover that it's not real, it's an institution.
Despite my chaotic life and mind. I am completely 'normal' in regards to wanting to live up to the standards society expects of everyone. That is I always wanted a nice clean organised home, loving relationships, good career, a car, holidays, etc. I desperately wanted some or all of these things. I believed if I just did what was expected of me by OTs, CPNs, media, books and people. I could achieve some of these things. My biggest dream since I was young was to have a successful career in something art related, much more than getting married or having children. I made the choice not to have children because I knew I had significant difficulties. Unfortunately this dream has never been realised. At this point in my life despite that I'm much better in myself I love my partner, friends, sister and job. I don't think I have achieved much through the eyes of society. I rent from social housing, no savings, debt, walk and bus everywhere, not much time or energy for a social life a lot of that is taken up with the brain drain of clutter and trying to achieve some order. I do try really really hard to achieve. I have been committed to overcoming my problems and giving back to the community I had volunteered with a few organisations. I wanted what was on offer and I always do my best.
Society seems to be very driven towards notions of success and happiness. To the extent of a fantatism, and hero worship. Unfortunately it's at the expense of less fortunate people. This is a personal example, as I deeply regret believing so much in these values. My mother was a hoarder and deeply felt the loss of her own mother.
When I was a very young child my mum remarried. I witnessed and tried to intervene in her getting brutally beaten by him. Resulting in him stabbing her in the stomach with a bread knife. She had to have blood transfusions. While she was recuperating, we stayed in foster care. Peer pressure effected me unconsciously. I never questioned that depression along with other social problems need to be redressed, corrected, fixed. The belief and assumption that it is better to be happy and functioning. Like smiling and replying, I'm fine, when asked how are you? Despite the pain you maybe enduring. She was a great example of how not to live your life. I believed I had to help her, get her better, by cheering her up, solving her problems and sort out the hoarding. Instead I wish I just accepted her as she was and loved her unconditionally, spending unpressured time with her when I had the opportunity. She was like a dependent and we had a bond as people, beyond mother and daughter roles. The judgements and discrimination against her was severe because her standards were so low. I would have liked a more comfortable upbringing and life but I am grateful for having an awareness through experience of social issues that blight so many lives. The realm of goodness, that is the society to aspire to, if you don't belong to it for any reason or don't want to be part of it then God help you. It can be punishing and hard, worse sometimes than living with problems, to be on the end of disapproval.
Everyone is on the end of judgements and pressures daily. Some suffer more than others. The way society works and operates, it's rules values the result of our collective cooperation and it's results are sacrasant. Although I'm a tiny bit of the collective I feel like a casulty.
I wanted to share my perspective with you because it was discovery and also a revelation to me. I feel I have completed a chapter in life. Thanks to some excellent support from various amazing people and the organisations they work for. I have come to accept myself for exactly who and what I am
A person from the underclass and have maintained employment and some respect in society who's parameters for tolerating the anti social is very narrow. Which includes being on benefits and considered shameful by the majority. There is a vocational support officer who has helped me reach my full potential through supporting me to maintain working. I have got out of societys basement. I am proud of my roots and have discovered myself and relate even better to the challenges my peers are dealing with. And recognise and symphaize with everyone for the invisible pressures and stresses they are under. I see we are all linked by expectations and demands. It has not been a level playing field for a great many. Some start from a very debased stage.
Although I have been watching a lot of news for some time. I understand the conservative party want to level this playing field in their manifesto, and there are agendas to create a healthy and fair society. I believe it is missing something, it is one sided deal. The redressing of stigma by encouraging talking openly about mental health issues. And building the new mental health unit next to the general hospital is a positive change, to encourage integration demystifying mental illness by normalizing it through exposure. Although I would like to suggest that society may have its own collective mental health condition, which is not evidently recognisable. It's always good to check and could learn a lot from the undesirable. I think a meeting of minds half way. As a person who experienced so many difficulties for so long I feel I'm been erased because I am putting on an acceptable face evertime I step out the door. I feel I have to pretend, the real me is very at odds. I and so many people like me are required to step up and join the ranks of what is considered reasonable and acceptable. I would like to see the mainstream take a look at themselves, to consider if their behaviour really is 'the' model for what is reasonable and acceptable?
