Thursday, 10 October 2013

Mental Health Stigma - Our Failures Shame us All

I was sent this story this morning. The woman who wrote it had to be braver than you can imagine, just to share it here. But after the vile Sun headlines that upset so many this week (I won't link to it, it only increases the people who will be subjected to it) she felt she couldn't wait any longer to tell her story.

An individual story of pain, yet one of failure that is so common it should shame us all.

"In 2001 my 48 year old father died of secondary cancer the primarycause was a very rare form of kidney cancer.

At the time I was 25 and in a relatively new job 3 months straight out of Uni.

My mum was 42 when he died and considered too young for widows benefit so before we could even bury my dad DWP were already hounding her.

She was allowed two weeks to grieve his passing and then expected to find work despite being a lifetime carer to my dad who was already disabled before the cancer (a lorry fell on his back when he was 17, he was forcibly medically retired by the time he was 25).

Given my job and income at the time I was ready to stay at the family home and declare her my dependent if it got them off her back.

Her then doctor finally came through for her and signed her off as unfit for work. Sadly, by this point a lot of damage had been done and my mum was in and out of hospital for the next 18 months.

I didn't grieve my fathers passing at first because I was too focused on my mum. I was pretty much running on adrenaline.

At the same time one of my colleagues was prompted to be our line manager (LM) and on top of my personal experience was now being bullied by him. Usually in one-to-one meetings away from any witnesses.

At first I didn't even spot the bullying because it was mostly coming from my senior manager who was acting on the malicious lies of my LM. This on top of what I was also dealing with personally.

Eventually my mum met someone and it was shortly after this time that the bullying began to take its toll and the grieving I hadn't done caught up with me.

In the latter part of 2004 I had my first breakdown. I was being bullied on the phone (subsequently developing a phone phobia as a result) and I snapped. I have never cried like that in my life nor
since. I had no control over it and I simply could not make it stop. I was convulsing. I felt the real need to flee and so I did.

I walked out of my job with no intention of ever returning. I'd stopped caring by this point whether I lived or died I couldn't cope any more. Something had snapped in my brain, a flood gate had opened
and there was no stopping the tsunami of mental torture & pain I felt. I was making my way to the multi-storey car park with the intention of jumping off (no suicide guards at the time), I could see very little
because the tears which were practically blinding me and they would not abate. I walked around aimlessly not knowing where I was and not caring about the way people were looking at me. Not one person cared to see if I was alright despite the obvious distress I was in. I managed to get my self very lost into the backstreets and I still could not see well with the flood of tears still streaming down my

At one point I did become aware of where I was and I stopped, brushed away the tears and then entered the building of The Samaritans.

I spent half a day there with them calming me, listening and trying to talk me down out of wanting to end my own life. It is no understatement to say that they saved my life that day.

I eventually went to my mums and spent the day with her. I was not left on my own after that and 9 months later I did manage to return to work.

I received a letter telling me our whole team had been centralised into IT out of education and I'd have a change of senior manager. At this point I thought this was a good thing because at this time I
still didn't know that how my senior manager had been treating me was based on the lies my LM had been feeding him (not that this condones his behaviour either). My LM was a master manipulator and had us all fooled even my colleagues.

With the help of Unison (because after that kind of treatment in the work place you do need a Union) we negotiated the conditions for my return to work and appropriate support.

It was all a wasted exercise. Within two months of returning I was back to being bullied but this time there wasn't the senior manager to hide behind. The bullying was the same as ever but this time direct
from the horses mouth; the LM.

I was still not fully recovered from my last mental health experience and my strength was not fully returned to me so I was more vulnerable this time and it took less time for the second breakdown to inevitably occur.

By 2007 I was again unfit for work. By 2008 ATOS had declared me unfit for work. With the help of my Union we negotiated my contract termination package as my employer stated they needed to replace me and would be terminating my contract.

You'd think with my being made unfit for work and loosing my job the bullying would stop. It did not.

For the whole of 2009 the bullying continued, now online. I bided my time collecting the evidence. Screen grabbing and printing it off to a file waiting for him to slip up and then one day he did, committed fraud by impersonating me. I then went straight to the police. They visited him at Somerset County Hall and gave him a warning.

It will come as no surprise that this is what it took to get the bullying to finally cease after eight years of it.

I still get the odd thing and as recently as last year, a nasty email redirected to me and again using my name fraudulently which I could prove and got the offending email account shut down. Otherwise I don't have much happen and it's not something I spend any amount of time
thinking about.

In between all this happening I was eventually on antidepressants (after the second breakdown). Over the years about 3 different types. Other than 6 therapy sessions I got no other support or treatment.

I begged my doctor for a referral to the NHS partnership for treatment but it was always phone counselling which with my phone phobia (my doctor knew full well of) never happened because of my anxiety with using the phone. I'd get on the CBT list and drop off because my doctor never chased it up or ensured I actually got the treatment. Everything I needed, I was denied.

For four years I was left to rot in my condition. I did the best I could to manage it, but like any ill health you do need medical intervention, there's only so much self medicating or self help you
can do on your own when your condition is severe.

I'd begun developing a form of agoraphobia when I was still in work (stopped going out for lunch, couldn't attend meetings on my own and eventually stopped using the canteen and always ate alone) and being left to rot in that condition as I was, it got severe.

The anxiety got worse as did the depression. After nearly four years and no light at the end of the tunnel I was probably at my worst. I stopped taking care of myself, I rarely ate and I'd stopped taking my
medication because in all the years I'd taken it I wasn't seeing the improvement I'd hoped for (I would like to add that with any medication it's important to get the supporting treatment which I didn't get and likely why on their own the antidepressants didn't work in my case).

The weight gain was also adding to my depression. My family seeing my deteriorating health made an appointment to see my doctor concerned at the way I was being left and how bad I had got. Little did they know that when on my own I was planning to end my life again and spending nearly all my time on suicide usenet groups and researching ways to end my life. I'd even begun writing my note.

One day I had nothing short of an epiphany and one I wish I'd had sooner, but sometimes it's takes going to a certain point in your life to see clearly; getting to the bottom where you either end it or drag
yourself out.

I contacted MIND, informed them of all I'd experienced and how I'd been left for years without proper support or treatment.

Whilst waiting for my assessment from them I took ownership of my health. I went fully vegan and increased foods I knew to be high in amino acids. I stopped researching ways to end my life and instead researched ways to improve my diet and use that as medicine. I lost nearly 5 stone in weight as a result.

In the time that followed I finally got the start of the help I so desperately needed four years before. I moved home, got a change of doctor and instantly got referred to Somerset Partnership for a home

I'd barely begin my journey with them when I was transferred from Incapacity Benefit to the WRAG (Work Related Activity Group) group of ESA. Now I should point out I had a severe phone phobia, agoraphobia, anxiety, depression and remained a suicide risk, but this coalition government were placing people like myself in the work capability group.

So just when my hope had returned that I could focus on getting better I was set back once again by this news.

I wrote straight away to them informing them it was quite impossible to do phone interviews with a phone phobia and that face-to-face interviews were equality out of the question when I could barely leave my home most days let alone travel eight miles on a bus to the local job centre.

To the credit of the lady handling my case she was amazing and supportive, but not typical of that Job Centre from my experience.

She spoke with my care support and even the Job Centre lady said to them I clearly should be in the support group of ESA.

I had eight months of hell from that point fighting the patently wrong decision. They wouldn't revise the decision so I entered the appeal stage expecting to have to go to a tribunal which terrified me given
my agoraphobia.

MIND were still very much in the picture helping me, making sure I had a care plan and putting me in touch with Shelter to help me with my appeal.

I had many interviews with Shelter and they helped me write up my appeal. I'd convinced myself I was looking at loosing everything and was even facing the prospect of being homeless. The thoughts of
suicide returned and hopelessness was creeping back in. I could feel the dark abyss sucking me down and I was back to not eating or sleeping.

I eventually won my appeal without needing a tribunal, but it was eight harrowing months and lot of wasted time that I could have been focusing on making the most out of my treatment as opposed to fighting a system I'd spent more than half my lifetime paying into.

My case, whilst unique to me is not an isolated case. So much time and energy was wasted, years where I could have been given the right support and early treatment that would have given me to the tools to be able to manage my condition and even be back in work. Instead I was left to rot in my condition, getting worse and now it will take as many years to undo all the damage that has been done and still with no guarantees at the end I'll ever be able to work again.

For me personally it's sad to have lost so much time and see my skills wasted. I've worked hard all my life, since I was fourteen and never known anything else. It was so alien for me not to be working.

Now, today the government is still attacking people with mental health as are The Sun. The stigma continues and the support is wanting.

They talk about making work pay and then they punish, and penalise.

Demoralising and demeaning people does not motivate or empower people to work.

Give people the support they need as soon as they find themselves out of work or sick, and the difference in getting people to a place fit to work will have lasting benefits for us all.

I've not gone public like this over my experiences before because of the stigma and way I have been treated. For a long time I had to resort to a pseudo name online to be able to even go online because of
the bullying from my ex-LM. I've been called a fake and a scrounger for claiming sickness benefit. So I've been reluctant to openly go public, but you know there comes a time when enough is enough.

1 in 4 people will experience mental illness in the next year and after the horrible headline from The Sun I decided to finally break my silence.

I will have depression for life now, as well as anxiety. It has been a mixture of support from my family, MIND, Shelter (who didn't have enough funding to remain in my town so please donate if you can) and
Somerset Partnership that I've made any progress at all and of course my own self determination.

The government have not supported me, they have not made work pay and they have punished and penalised me, yet in my last employment I was paying forced deductions of approx. £600. I have less than that each month now to 'live' on.

To be labeled by this expenses swindling government a scrounger when I struggle to buy food, to be told I am a something for noting after all the forced deductions I have paid, when ultimately all I wanted was to get better and be financially independent from the state is egregiously insulting to me and others like me.

I didn't choose to go from £2,000 a month to £300 a month. That is not a choice. If I'd had the choice my complaint of bullying and harassment would've been upheld instead of being the pointless lip
service policy it was and I'd still be earning 2K a month. The irony then that my employment was with local government and of all the jobs I've done it was THE worst.

Nobody chooses a life on benefits because it is not life.

Most days I'm afraid to check my bank balance because I can barely live and yet I get more than those on JSA. I've given up everything I can to ensure I eat the right foods to help manage my condition.

I don't have live TV so no TV licence, I don't drink, I don't smoke and I don't drive. I don't have a landline so no broadband. I have a PAYG mobile which I use as a wifi hotspot for my internet. I have done everything humanly possible to keep my outgoings for only the absolute essentials and to support my condition.

I'm currently in arrears with my council tax because I simply don't have enough money each month to pay them even more so now they've doubled my bill since the 20% change.

I've even had a benefit advisor look at ways to help me and she looked at my spreadsheet, admitting there was nothing more I could give up. I was also told I'd be better of stating I spent £27 on Sky than eating healthy (in light of my being a vegan) because they make an allowance for Sky but not for eating healthy (all of which I relayed in a letter to Jamie Oliver after his rant about the eating habits of those on low incomes).

Dealing with mental illness is struggle enough but it is perpetually compounded by not getting the right support and treatment, the right attitude from your own government and the tiny income your given which compounds your ability to cope and manage when you struggle to feed yourself, and pay for only the essentials. I've proved that by giving up everything deemed not essential and still I struggle to manage. 15% of my income goes on gas and electric placing me in fuel poverty the other higher percentage is food.

My aspiration is a simple one to continue getting the treatment and tools I need so I can safely manage my condition and eventually work for myself.

I have a degree in art and my work isn't half bad. I would like one day to work from home using my skills and selling my work online. Had I had treatment sooner I could've been doing all this already and
years ago.

Support & early treatment is everything.


  1. I so sympathise with this lady. At the moment I am trying to get treatment and just do not know where to go. I have had deoression since age 13 which has got significantly severe over the last few years since I have had fibromyalgia as well. I have many suicidal thoughts and battle with self-harm. When I first saw my doctor 18 months ago I got 6 sessions with the CPN. When I started self harming I got a further few. But then it was made plain to me that "due to budget restraints" I would not be allowed any more sessions. Just lately due to certain circumstances I have again been very suicidal and in that deep dark pit. But nowthere is nowhere to go for help, little point in seeing the doctor if I have had all the sessions with the CPN their budget will let me. So my friends keep having to talk me out of suicide which so far they have managed but isn't very fair on them! I know I need long-term treatment and counselling to sort my muddled brain out and support me but it appears that that is out of the question unless I can afford to go private - which I can't.

  2. On reading this post i was sadly not surprised or shocked in the least - why? because it is so very close to my own experiences i could have written it myself. I got told i was fit for work by atos and had to appeal, attending a meeting with 5 people all focusing on me was horrific even though they were supportive and overturned the decision. I had just got one decision overturned when i got another letter for assessment which went to same way - finally i managed to get that overturned as well thanks to a lot of help and support from condition management staff. I too have phone phobia and find going out in public extremely stressful. I moved 60 miles away from my home town because i was scared of running into someone from work. I now wait everyday for another letter to come telling me i have to go through assessment again. I don't want to be ill, i want to be able to live a normal life and be able to work. I try constantly to find some way i don't need to be dependant on benefits but because of my depression and anxiety i just can't maintain any sort of routine or interaction with people. I too want to work for myself now - the thought of working with or for anyone else scares me half to death. it doesn't help that my employer was a mental health organisation who offered me no support and actually became the bullies themselves. I now survive with these conditions - living is a long way off what i do. Perhaps one day i will be able to manage working from home - I can but hope i do not get tortured again by assessments and appeals etc before i make it that far.

  3. My story is nearly the same. The non-stop crying when I finally cracked. Bullying at work, depression, anxiety. For 11 years now I have been left to rot.

    No one believed me when I asked for help. Occupational health could not help. No one.

    I have ended up with ME/CFS and fibromyalgia. People make fun of these conditions. I hope they never have to deal with the ways this illness fucks up your life.

    Cutting expenses to the bone so I have no life. Doing unspeakable things to get by.

    No one is helping. They say they can help, but it's window dressing

    I actually made a conscious decision to become addicted to some tranquilisers in order to be able to self-refer to the addiction services where they had a mental health team,

    group sessions with acupuncture and limited psychological help. I went there for three years and hung out with heroin addicts and other fucked up people like myself.

    This ended and I coped for awhile. Then, this govt came into power. That word. Power. Power to kill people.

    After 3 years of asking and asking a new GP (who is only at the surgery temporarily of course), was referred to the pain clinic. Told me to get a TENS machine for my pain

    and recommended some books about how to deal with pain.

    I have been on many kinds of medications.

    Anyway, there is no help. I repeat, the govt are saying they are helping people, but this is a lie. Only Atos telling people they are partly fit for work. How I wish.

    Unless you have been through bullying and the breakdown that follows, you cannot know just how powerless and helpless your life will feel. Knowing that no one is out there that's on your side, who will help you fight your corner.

    I talk to no one about my illess because of stigma, and because they would ask how I survive. This would mean telling them I am on benefits.

    On good days, when I look well, there are insinuations about why I am not working. People don't understand and for that reason, there is stigma. The Sun can go fuck itself.

  4. I'm the same. I was extensively bukllied at work which led to a mental physical breakdown in 2009. I have been on ESA since then. In my area there is NO support for my Aspergers but with support I have recovered for 5 years of depression. I am still ill and developed fibromyalgia.

  5. the mental health care in the uk is at a all time low and the sun and the mail like the government are to blame

    you can take this test to see how much the daily mail hates you

    both my wife and i are hated as expected

    this country is not the place for decent people to live and where years ago professional people close to me thought i was mad they now say I'm right

    David Cameron just proved my point on tv highlighting the greatness of buying royal mail shares like many people in the uk they know the price of everything and the value of nothing.

    1. Even if the daily mail hate test said i should be torn from limb to limb and fed to lions, i would still be better than anyone who thinks a mentally ill person isn't worthy of love, care, help and respect from everyone in the world.

  6. You're a very brave woman to have kept fighting after all of these years of such despicable treatment. Sadly I know there are so many more people out there with very similar stories - my own for one - thankfully I have turned a corner in my life and am now fighting on behalf of people like you and me - I see misery and I hear about pain and suffering every day - people who have been let down and left to rot - now that I am strong and well I can't accept that this is their fate and so I fight for justice - everyday, sometimes in small ways and some times in bigger ways, but each day I take the battle forward in the hope that one day this will stop and people like you and me won't have to live in fear and without hope.

  7. First of all may whatever goodness there is in the Universe please bless this lady. Secondly I'd liketo say I'm shocked,horrified or saddened but I'm not ,not now, as I hear stories almost exactly like this every day.Severely ill and disabled people living in terror and despair.I don't know what more it will take to make the goverment listen and actually *help* people .

  8. Rachel Reeves has made a disastrous start as the new welfare reform minister for labour with her very poorly chosen use of words. I find this whole welfare reform a bit of a wind up as i don't believe that Rachel and IDS are as thick as they like to make out

    sure it looks good before a judge when he asks how many people have died going through the welfare reform bill and they both answer i don't know which is correct as they don't know as they not only play dumb with the public they also play dumb with the DWP ministers so that at any point there not responsible of any deaths but the sick and disabled are at all times

    Rachel's speech today is on the same lines as IDS in other words go to work or die she spells it out not very clear but it come across very clear to those not in work and in reality her tone was applicable to those that will and could never work.

    well going into the next election with IDS and Rachel in the driving seat is not good at all at the end of the day it is only welfare reform that will decide the next election as it ranks higher then any other government policy

    the public are going to have to make their mind up in what they wont from a future government as from where I'm sitting the sick and disabled are going to be on there way out from society not only here but in the USA as well

    having looked at all the profiles of all mp's there isn't one that would make a good minister for the sick and disabled and for the life of me i cant see anyone making the grade in the future so with regret the future of the sick and disabled if Rachel's speech today is anything to go by will rule them out of a future and into an early death come 2015

    and here's a taster of what life will become in the UK
    Veronica Kenning's #BedroomTax Protest- From Her Deathbed

  9. Having read this story, and the comments on here and from my own experiences, why isn't more done to sort out work place bullying? I was bullied out of a job with a police force by a senior manager. It got to the point that one day I considered driving into the central reservation of the motorway I commuted down daily to try and get some time off work. I wasn't eating, sleeping, living...

    The message from this story is clear, much more help needs to be given to help people and support them. By providing care and support more people will be able to work.

    Why is it everyone but the government can see this?