Stigma and work

Today is World Mental Health Day and it got me thinking about mental illness and work, in particular, people's attitudes towards the mentally ill in the workplace. When I had my major breakdown, it was triggered by an incident at work. My view of it was that everyone was supporting the people making allegations against me and there wasn't a single person who was prepared to take my side or at least accept that my version of events was reasonable and true. At my lowest point, I remember sitting in a corner of the office trying to stuff envelopes while sobbing my heart out. I would have expected any normal person to express sympathy that I was upset and maybe say some words of encouragement but I was ignored.

Once I started my long period of sick leave, it was as if I didn't exist. No-one called to see how I was and when I came into work for meetings with my manager, people looked right through me. At the same time, another colleague was ill with a brain tumour. He had his family around him to support him and many of my colleagues visited him on a regular basis before he sadly died. It may sound a bit like sour grapes but I was deeply upset by this as everyone at work knew I didn't have the support of my family and was trying to cope on my own. I'd known the guy with the tumour for nearly twenty years (which most people at work knew) but when he died they apparently drew lots in the office to decide who would tell me as no-one wanted that responsibility. Perhaps they thought this news would push me into a suicide attempt (they were aware I'd made at least a couple of attempts already), perhaps they just didn't want to talk to me as I was now "mad". Either way, I felt they didn't have much respect for me and it was clear that the people I'd thought were my friends were anything but.

Since I lost my job over 4 years ago, I've had plenty of time to reflect over what happened and I'm pretty sure that if people hadn't shut the door on me, I'd still be working. In the run up to my dismissal, I came across a great deal of prejudice and misconceptions. The greatest of this seemed to be if I harmed myself, I would more than likely be a danger to children. If only they had spoken to me, my colleagues would have realised that this wasn't true. Yes, I was self harming during the period that I was still able to teach but it was something that I did in private and I made every effort to hide my injuries from my students. Only once did a child ask about the scars on my arm and my explanation that I'd been in an accident was accepted.

Having read some of the reports that were passed on to my manager, it was clear that people were making their own minds up and often exaggerating things. One report said I'd come into the office with my arms "covered in blood", something that I wouldn't have done in front of my psychiatric nurse who was non-judgmental about my self harming. It's clear that ordinary people are very afraid of mental illness but it's not catching and you're not going to become mentally ill just by talking to me. Most mental health patients are not easy to spot probably because we're pretty much just like anyone else. Yes, we do have difficulty coping with things that other people find easy and at some time in their lives, 1/4 of the world will experience some form of mental distress.

Perhaps that statistic is what scares people, a case of "there but for the grace of god" or maybe it's just ignorance. The media doesn't help with its depiction of mental health sufferers as people who stop their medication and start attacking or killing people or headlines that emphasize the fact that someone who committed a crime had a mental illness. What we need to see is the ordinary side of people with mental health problems then maybe the rest of the world wouldn't run a mile. Perhaps then I could join groups and be comfortable telling them that I have a mental health problem. I'm fine with telling them about my physical conditions so I should be able to tell them about my mental conditions without fear of being rejected.

Easy targets

This time, it's the Conservatives who have chosen to attack the benefits system as David Cameron has outlined his proposals to sort out "broken Britain" and get hundreds of thousands of people off incapacity benefit and back into work. My first question is, where are all these jobs going to come from? Every week there are news items about companies having to make people redundant due to the recession so where are the vacancies for everyone?

Having brought up the subject of people on incapacity benefit, the next move is very predictable as joe public starts ranting and raving about "benefit scroungers". I've seen this happen every time that a politician brings up the issue of welfare reforms and have been appalled at people's attitudes. I'm sure there are people who say that if I can write this, then I am capable of doing a job. What you don't know, is that I am doing this in an environment where I feel safe and can work at my own pace (something that would not be acceptable in a normal working environment).

I suppose attitudes come from experience. If you'd asked me 10 years ago to describe a person on benefits, I would probably have described a working class single parent who sat in front of the telly all day drinking cheap beer and splashing the cash on holidays abroad who was perfectly capable of getting a job but just couldn't be bothered. This view isn't helped by the media who often feature people who've got numerous children by different fathers who seem to be raking in hundreds of pounds a week to spend on beer, cigarettes, tellys and other goodies.

The reality, at least for me, is very different. When I worked, I was earning at least two thousand pounds a month (I worked almost every day for up to 12 hours at a time). Then I became ill with a crippling mental illness. For 3 1/2 years, I fought to keep my job but was declared medically unfit and given the boot. During my final months of employment, I'd been granted Disability Living Allowance (DLA)to help pay for things that would help me manage my condition and been moved onto Incapacity Benefit as the sick pay from my employers had run out.

Once I knew I'd lost my job I became terrified that I would lose my home as I didn't know how I would be able to afford the mortgage payments (it's a small flat that I bought for just under £50,000 so it's not a mansion) never mind any other bills. Luckily, someone steered me through the minefield of benefit forms and I knew I had to swallow my pride and take the money, after all, I'd paid a fair amount of income tax and National Insurance over the years. It was either that or live on the streets as far as I was concerned.

If anyone thinks that people on benefits is well off, let me tell you that we're not. The amount of DLA you get depends on your level of disability and not your income. This is not an easy benefit to get as you have to fill in two very lengthy forms which ask very intimate questions about your health and the problems you have coping with day to day living. It took me three hours to fill these forms out and I needed a support worker to do this. Other benefits, such as Council Tax, Incapacity and Income Support are dependent on how much money you already have (if I have more than £6000 in the bank, my benefit is reduced so there is very little money reserved for emergencies), your level of disability and what the government says you need to live on.

I'm not sure how someone came up with the figure that I need to live on and it usually stays fixed for a while year. This is fine if the cost of living stays the same but can have quite a dramatic effect if things such as the price of gas and electricity go up. Talking of gas and electricity, if you're a pensioner, you get a Winter heating allowance regardless of your income so Lord Snooty, who has money to burn, effectively gets, erm, money to burn whereas younger people, like myself, have to balance eating proper meals with keeping warm. The only exception to this, is when it gets really cold and we get a cold weather payment although to trigger this, the temperature has to be below a certain level for a certain number of consecutive days so you're scuppered if the temperature rises one degree above freezing for one day.

Perhaps it would be a good idea if politicians had to experience the benefits system themselves for at least six months (including the whole application procedure). Let them see what it's like to have to sit in the cold because you can't afford to put the heating on or have to do without the nice food, holidays etc. because you don't have the money. Perhaps we might hear less about "benefit scroungers" after this. Yes, there are people who milk the system, who lie, cheat and don't speak up when their conditions improve and I don't think it's unreasonable to check up on people from time to time. There are already systems in place that check your bank statements to make sure you're not earning (I regularly have to submit bank statements to prove that I'm not working and I'm not hoarding loads of cash). By all means, weed out the people that claim to be unable to work for very spurious reasons but please stop attacking those of us that are genuine.

I would love to work if I was able to but I am deemed unfit to work by a very competent medical team. Add to that, the lack of jobs and the attitude of employers towards the disabled (and the often extreme attitude towards people with mental health problems) and there seems little hope. Disabled people are often seen as an easy target as politicians assume we aren't capable of mass demonstration due to being disabled. What they seem to forget is that we have the ability to vote so beware of targeting us. If you want to find more money then stop bailing out failing banks or stop throwing money into wars in countries that we should have nothing to do with. Above all, stop allowing MPs to claim ridiculous expenses - let them try to manage like the rest of us have to do.

Mental and physical health.

I've always been a bit of a sickly bunny although for the first 30 or so years of my life all I had to worry about was my asthma. This was a disease that I thought I could manage as I knew when things were going downhill and usually managed to stay on top of it. After taking part in several clinical trial at Kings College hospital, I felt I was well educated in that area and I still feel like a very well informed patient. Perhaps that's why my GP never bothers to review my treatment apart from occasionally testing my peak flow (basically, how well I can blow) if I ever show up at the surgery.

Then, at the age of 34, I was classed as having a severe mental illness. I know I have this label as I caught a glance at the computer screen while seeing my GP and saw that I was on this list. Thus began the gradual falling apart of my body! I had to do a whole battery of blood tests to rule out possible causes of my broken mind and it was discovered that my cholesterol was pretty high (I think it was somewhere near 14 which is not good). Given that there is a family history of heart attacks and strokes on my mother's side, I was put on statins and sent to West Middlesex hospital to see a specialist.

My memory of this time is a bit hazy (probably due to how ill I was mentally) but I remember having to do a rather nasty treadmill test to check my heart. For an asthmatic who is triggered by exercise, this is not a fun test to do but luckily my heart was fine. I also remember seeing a nurse at my GP surgery who handed me leaflets sponsored by Flora and Weetabix which suggested I ate what amounted to cardboard. Why is it that everything that tastes really good is so bad for you? This is one of the crueler facts of life! Needless to say, I never managed to stick that well to the plan. I blame my BPD as one of the features is an inability to follow through with long term plans, well, that's my excuse and I'm sticking to it.

I'm not sure if it's because of my asthma but I'm very susceptible to colds and flu. If I'm in the same room as someone with the sniffles it's a sure bet that I will get it in a much fiercer version. In April 2004, I was working on a course with someone who had a virus that made him feel pretty rough and the following week I was hit with the same illness. After a few days, I could barely get out of bed and when it got to the point where everything was starting to grey out, I thought I'd better call an ambulance. I thought I'd go through the usual procedure of being taken to A&E, being nebulised (a high dose of the medication I usually used to help me open my airways), given antibiotics and steroid tablets and then sent home.

At the time, I didn't know how ill I was and kept telling the doctors that I wanted to go home as my natural fear of hospitals was kicking in. In the end, I gave in as they told me it would be a really bad idea to go home in my condition and I ended up being in there for eight days. When I was discharged, I thought, quite rightly, that I'd been pretty much cured (although it took about another month for me to be fully back to my usual level). Unfortunately, I'd come into hospital with one problem and left with two as the daily blood tests I'd been having had picked up that I was anaemic and might have diabetes as my sugar levels had been consistently high.

This was quite a blow for me as I'd been struggling to manage several teaching jobs along with a dark and difficult period for my mental health and I felt I'd finally reached a point where I could put all that behind me and go back to being a normal person doing a normal job. The anaemia turned out to be relatively easy to fix as it most likely had been caused by my addiction to painkillers. The diabetes, however, wasn't nearly so easy.

When I finally managed to get a clinic appointment, I was handed a meter so I could test my blood sugar levels and a dairy, shown how to use them and told to return in a few weeks with the results. A couple of weeks later, I was told I had type 2 diabetes, given some pills and told to come back in a few months. This really knocked me for six even though I'd been given a warning about diabetes several years ago. It was during the time that I'd been doing the asthma clinical trials and they suspected that I might have diabetes. In the run up to doing the test for this, I wrote in a journal I'd been keeping that I really hoped it wasn't diabetes as I didn't think I could cope with it. At the time, I got the all clear and the only advice I was given was to "eat more broccoli". Hmm, something not very effective about that, I think.

There are guidelines outlining what treatment you should expect to receive when you're first diagnosed with diabetes. I know this because I'm the sort of person who has to look up everything I can find out about my conditions and medications. This is probably something that annoys doctors as I'm sure they're not keen on informed patients who can't be fobbed off. One of the things I was supposed to get was a psychological assessment which would have been great as it took me a long time to even acknowledge that I had diabetes and, even now, I still struggle with the concept. Sadly, this never materialised and it quickly became clear that most of the doctors would look at my mental health diagnosis and act on that. They appeared to make the assumption that because I had a mental health team, they would sort out how I was dealing with my diabetes without considering whether or not anyone in that team had any knowledge of the condition. I've also lost count of the number of times a diabetes specialist has treated me as if I haven't got a functioning brain. Don't they realise that mental illness is not the same as a learning disability? A friend of mine has told me to remember that doctors are not infallible but surely they should know that mentally ill people can still be high functioning.

Since my diabetes diagnosis, I've had a number of physical health problems or things that need investigating and, in my mind, these things have increased in number since my mental health diagnosis. At one stage, I was having frequent blood tests and my GP spotted that my white count was far too high in all the tests. This prompted a referral to a hospital specialist and triggered a bad depressive episode for me as no-one had told me anything beyond the fact that my white count was high enough to need urgent investigation. Sometimes, all that information on the internet can be a bad thing as I did my usual investigation and only found bad things. As it turned out, my unusually high white count is probably down to one of the drugs that I use to control my asthma which is not something they tell you about when they say it'll be good for you and keep you well!

Over the last few years, I've found it's often better to not got to my GP with little things that niggle me as he seems to have this knee jerk reaction that ends up with me panicking as I wait for yet another hospital appointment. I've come to this conclusion after thinking I might have cancer in my eye (which was just a mole on my retina) and my mouth (this lump has probably always been there and gets sore if I smoke too much, am stressed or eat too much spicy food). Sadly (or maybe not), I've got a friend who thinks differently and she's always nagging me to get myself checked out.

At the moment, I'm waiting for an appointment to see the eye specialist at the hospital as the pressure in my eyes is too high. No-one has told me how high so, once again, the evil little voice that I sometimes hear is telling me that I'm going to go blind and that my eyes are going to be the first thing that fail because of my diabetes. Part of me thinks that this is poetic justice for missing my last appointment at the eye clinic. I was already a patient there initially to investigate the patch on my retina but I lost faith in them when they denied I had a cataract (which the optician has confirmed three times) besides, how can they expect people to remember appointments when they're 18 months apart and a confirmation letter is never sent out.

I'm pretty sure I won't lose my sight in the immediate future but the internet has already wreaked havoc in my disordered mind and I'm dreading the thought of yet more medication or even laser surgery! In the meantime, I'm battling with my diabetes as the new medication I was put on last week doesn't seem to be keeping my blood sugars in check. I'm a bit undecided about it as the only symptoms I'm getting are being constantly thirsty which means I drink more fluids resulting in needing to pee several times an hour which is a lot better than the frequent stomach upsets that I was getting on my previous drug. Oh well, I guess it means I'll be back at the hospital much sooner than I had hoped. If I keep this up, I'll be entitled to a chair in the waiting room with my name on it!

What's my story?

Sitting around doing next to nothing today, I realised that I probably didn't have a full introduction to these ramblings and maybe it would help me to "vocalise" some of my history. Maybe the next time I have a new care worker, I can point him/her to this site instead of having to remember all this stuff.

I'm a late sixties child and nothing remarkable happened in my early years although I had breathing difficulties when I was born (probably why I've had asthma all my life) and was put into an incubator. Maybe this explains the problems I have relating to my mother as I've never felt close to her and she seems to be spending a lot of time trying to make up for this resulting in a lot of problems between us. Between the ages of 6 and 9, we lived in Ireland and I remember this as a mostly good time (apart from the nuns that taught me!) playing with lots of other children and generally having a laugh. Even at this early age, I had a weight problem, I can remember overhearing my mother telling a friend that she had no idea why. I ate the same as my younger brother and was always playing outside (this was before the age where children spent most of their time in front of the t.v. or playing on computers).

Just after my 9th birthday, we moved back to England and this seems to be where the trouble started. I joined the penultimate year of a local primary school and was quickly singled out, firstly, for being overweight and, secondly, for having a lisp and a strong Irish accent. Pretty much everyone else in the class had been together from Nursery and it seemed to be very hard to make friends. This was probably the point where I started to become a "people pleaser" as I did many things to make people like me including stealing to order from local shops. It was during this time that a group of boys in my class took advantage of my naivety and got me to do things that I still can't talk about but which haunt me still.

Secondary school seemed to be torture for me. I was very much a loner and this was exacerbated by my interest in Classical music. A teacher once told me that people found me strange because of my musical interest and I should read girls' magazines so that I would be able to talk to them about something (needless to say, I never did this). My music teacher spotted that I had some talent and arranged for me to apply for a music award which would pay for a place at Saturday morning music college so that I would be around people who had similar interests. My hopes were raised to an incredible height by this only to be smashed to pieces when I received a letter rejecting my application.

My mind finally broke and this triggered my first suicide attempt. I had left a suicide note at school which was found by a teacher and they found me before I had chance to do anything serious. I don't remember too many details (probably because I was very shut down) but I do remember my parents being furious. My mother made me write a letter to the police saying I'd been very silly, I didn't mean anything by my actions and I'd never do anything like it again. Years later, I learnt that my parents had been advised to take me to a psychiatrist but they decided everything was fine. This seems to be their approach to my mental health - pretend bad things aren't happening and everything will be okay. The result for me was my ability to pretend that things were fine even when they clearly weren't.

After an appeal by my teacher, I was given an audition and gained a place at junior college and my parents begrudgingly allowed me to go as long as they didn't have to pay anything. However, I wasn't allowed to go on my own, my father had to drive me there and back which probably wasn't his ideal way of spending a Saturday. At this point, I was 14 and most girls my age were going to parties and hanging out together. Not me, my parents refused to let me do anything like that and I wasn't even allowed to play in the next road. I couldn't take part in any after school activities as my youngest brother (born when I was 10) had started school and I was expected to take him to and from there every day. As a teenager, it was depressing to be standing with what I considered to be old people at the school gates every day.

People say school days are the happiest of your lives but that's not always the case. I was a very angry, aggressive child forever getting into trouble. Most of the time I had no idea how I arrived there or something that I thought was a good idea suddenly turned bad, like the time I set a fire under a staircase. I think if it hadn't been for my musical talent, I would have been expelled either that or the fact that my catholic parents and teachers didn't want to acknowledge my growing mental illness.

Somehow, I made it to the end and gained a place at music college to do my degree. I thought that this would be my gateway to the outside world but my parents, in particular, my mother, were having none of this. Although I was entitled to a place in a hall of residence, they weren't prepared to let me go. I tried to move out a number of times but each time they put barriers in my way. their usual response was that I wouldn't be allowed to take anything from the house and they wouldn't support me financially. The "people pleaser" in me stopped me standing up for myself which is something I'll always regret. Maybe if I'd left home at an age when my peers were learning to be independent I'd have learnt to cope with difficulties. Instead, I never felt like an adult as I made my way home on the train each evening.

By this point, I'd began to drink heavily and usually arrived home with a hangover. I'd learnt to hide what was really going on as I knew it was better to walk in with a smile on my face and say everything's fine. In fact it wasn't and I had at least one major depressive episode that needed intervention from the college counsellor. Once again, I somehow made it through and graduated with a good honours degree although I still tell myself that if I'd actually done some proper work, I'd have got a first.

While I was doing a post graduate course, I sort of fell into class teaching. It was a baptism of fire as I'd had no training and I remember very little of that period as I was still drinking. Towards the end, I had what I would call my first major breakdown. Previously, I'd been able to manage my depressive periods but this time I locked myself in the toilets in between lessons as I couldn't stop crying. I'm not sure how long this went on for but, like my parents, I chose to ignore it.

I eventually went on to do my teacher training and then ended up with my dream job - teaching drums. In fact, I ended up with my old percussion teacher's job so it was a bit like coming home as I already knew many members of staff from when I was at school. At this point, I wasn't in a financial position to leave home (so I thought) and besides, I had no idea what was involved. Living with my parents turned out to be a very bad idea though as my mother objected strongly to people from work phoning me and on more than one occasion she insulted my manager.

The job itself was ideal for me as I no longer had to deal with the politics of a staff room. I spent my days driving round the countryside going into schools for maybe 3 hours at most doing the thing I loved most in the world, music. There were a few times in the week when I had to work alongside other people and these short sessions worked well for me.

Five years into that job, my mother finally got sick of my living at home and I ended up buying a place of my own. At last I was free and it felt unreal, it was as if I was playing at being an adult even though I was 30 by then. I could go to bed when I wanted and pretty much do what I wanted. Okay, I had to deal with my mother phoning me several times a week as she couldn't really let go, but I was finally my own person.

Then I started to find out what that person was really like and I wasn't sure I liked her and neither did anyone else. This hit home when I decided to have a flat warming party and invited all my "friends" from work. You've no idea how bad it felt when only two people turned up very briefly. There I was with loads of food and beer and no group of friends. I thought I'd try to find local friends and started going down the pub as I thought that was what other people did. Again, the social awkwardness kicked in and, after a few weeks, I realised that the only person that knew me was the barman and he only knew what my "usual" was so I decided it was cheaper and less painful to get drunk at home. Thus began my period of getting up, going to work, going home, getting drunk, going to bed and getting up again.

Things at work were no better as my social difficulties were starting to cause problems there. I had numerous clashes with managers, usually over longstanding issues. this was not always my fault and I pointed out to them that they were as much to blame as some problems had been allowed to fester for years! There seemed to be quite a few evenings when I drove home in floods of tears for no apparent reason and I eventually plucked up the courage to see a counsellor. In fact, I saw two different counsellors in this period but didn't make much headway with either of them.

During the Easter of 1992, I was teaching on a residential music course when I had another major breakdown. This one came completely out of the blue and really knocked me off my feet. I couldn't even manage to teach without crying and frequently had to shut myself in the toilets to have a good sob. The rest of the time, I shut myself in my room and hardly showed for mealtimes. I'm not sure what my colleagues thought, I know some of them were aware how low I was but they chose to ignore it, probably in the hope that it would go away. Fortunately, I had a few days after the course before the start of term and managed to get back to what I considered normality.

I thought it was just part of my normal mood cycle and that it would be normal for me to have something like this every ten years. Above all, I thought I was safe for many years. How wrong I was! Towards the end of November, there was an incident at work where my ability and standing were brought into question and this triggered an even greater depressive episode. This time, I was seriously suicidal and it ended with me going to my GP and asking for help as I knew I couldn't cope any more. This was two days before Christmas which has never been a good time of year for me.

I tried to go back to work in January hoping that Prozac was the answer but it quickly became clear that I still couldn't cope and I was told to take sick leave. Over the next six weeks, I jumped many hurdles including seeing my first psychiatrist and admitting that I not only had mental health problems but also drink and drug addiction issues as I had been using painkillers in increasing doses for a few years in order to help me sleep.

At that point there were no procedures in place at work for people on long term sick leave and I went back to my full work schedule towards the end of March. This proved to be a bad move and I ended up taking more and more sick days as I couldn't cope with more than a few days at a time. I had acquired a social worker by this time and had also been referred to the psychiatric day unit. On several occasions, the issue of hospital admission had been raised but I kept refusing to go. Looking back on this, I think it was a mistake as it might have got me back on my feet. I was just too scared to go as the thought of a psych ward was too terrible to contemplate plus, my parents would find out and I couldn't deal with their reaction. The doctors didn't push me too hard on it, after all, I wasn't a danger to anyone except myself and they probably considered my self harm to be moderate.

Eventually, occupational health got involved and they deemed me fit to work but only at a greatly reduced level. Over the next two years I got pretty close to a full recovery before someone at work panicked over something very minor and suddenly I was told I couldn't work until occupational health said I could. This was in September 2004 and it took until the following April before I was referred by my manager. Fortunately, I'd teamed up with a mental health advocate who attended meeting with me, spoke up for me and wrote numerous letters on my behalf. Looking back on it now, it's clear my employers had had enough of my poor attendance (which was not helped by everyone's attitude towards mental health problems) and had already decided to get rid of me and in August 2005, I had my fitness hearing where they told me I was losing my job because of my health.

In preparation for this hearing, I'd asked for all my occupational health records. After reading them, it became clear what had been going on. Conversations that I thought had been confidential and were just someone offering friendly support were recorded in detail and there was an allegation that I had assaulted someone. This last bit probably explained why people stopped talking to me and calling to see if I was okay and, more seriously, why I'd suddenly been told that my employers couldn't let me be near children while I was self harming. I think this rule hurt me the most as I've never been a danger to other people only myself.

It's taken me a long time to accept losing my job. Even now, I find myself thinking "if only" and I know that because of my mental health history and other people's prejudice, I will probably never be able to teach children again.