What a year of unemployment has done to my mental health

It has been almost a year now since I found myself unemployed and unable to work due to illness. A lot has happened in that time, my world has been turned on it’s head and I have been left feeling emotionally bruised and battered. I’m not sure I can say with honesty that I recognise the person I see in the mirror all that much these days.

When my job ended (one month and one day before Christmas, a blow that felt particularly callous) I said I had chosen to leave for health reasons. This was not the case, in fact I was made redundant without any severance pay as the beautiful, brave social enterprise I worked for was  dismantled around me and then closed down.

However at the time I wasn’t able to say that, it wasn’t until months later in February I was able to tell people I had not left voluntarily. A hard thing to keep to oneself especially when you’ve spent over a decade in therapy learning and being encouraged to reach out for support when you need it-and I did need support badly. Even now I can’t really go into details. What I can say is that in the run up to the end the company had been whittled down to just myself and my boss and we worked ourselves to the bone under unbearable pressure to try and save what he had built, the literally award winning work we did supporting people with mental health problems.

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A beautiful but bittersweet night at the Tech4Good Awards 2015 knowing it would be the last award we would ever win

Slipping and then free falling down the rabbit hole

I had already begun deteriorating earlier in the year as the pressure mounted which manifested in deepening anxiety, depression and as my Anorexia worsened I did literally begin to work myself to not much more than bones.

When the job ended I was devastated but I also saw it as a rare opportunity while I had the safety net of my parents roof over my head, to “work on myself”, “devote myself to recovery” and “give myself a break for the first time in years”. Noble goals.

I think the biggest thing I have learnt about myself this year is that I am naive and I have definitely learnt that the hard and painful way.

I naively thought I had lost enough and things were as bad as they were going to get. After all the previous year I had been forced to move out of the lovely little flat I rented with my partner, back in with my family due to a torturous neighbour situation which ended in police intervention. I had lost my home and independence, now my job, income and health. It couldn’t get worse right? Fool.

In the immediate aftermath of the job loss there was a genuine grief, not just for what I had lost but for my colleagues too, the business itself, the way of life which was difficult but something I relished. Commuting daily into London, helping people, travelling all over the country..

I thought that some time off (planning to get back to work in the new year) would give me perspective but instead I fell into the oldest trap my mental illness lays, I fell too deep into my own head. Without structure or an incentive to fuel myself the Anorexia did not waver, instead it grew and I shrunk. I chased a number, a grotesque and arbitrary figure that has been stuck in my head for over 12 years and I didn’t just reach it I went lower and it terrified me but I could not stop even when my own heart was threatening to quit on me.

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This, if you can believe it, is the more “discreet” ECG which I wore for a week at one point 

It terrified the people around me too. When I’m ill it feels like I’m under water, I can’t concentrate properly on what people are saying because everything sounds distorted and I feel a strange numbness – only reinforced by being so cold I am often physically numbed. Yet it still feels like a needle being stuck into your heart when friends see you and burst into tears, or when you realise your boyfriend is scared of holding you too tight and breaking you. I could see objectively so clearly the absolute destruction my eating disorder was doing but it still felt like the only sane reaction to my insane brain in my suddenly upside down, stripped back, broken world. Suddenly I found my whole life given over to battling the illness, believe me it didn’t happen like it does in films with a spiritual retreat and sudden Eureka moment but with brute force. At one point I was having five appointments a week – group therapy, individual therapy, check ins with the GP, blood tests and ECGs. I saw psychologists, psychiatrists, dietitians, nurses, you name it, I tried it. I was asked on multiple occasions by clinicians if I thought I needed to go into hospital. A stupid question to ask a perfectionist, people pleasing Anorexic. Especially when consenting meant a bed in the “nearest” unit which is 400 miles from home (a shocking situation in itself). I couldn’t leave my partner, my family and friends, my whole support network and go to another country for months on end – how could I say yes to that regardless of how ill or far gone even I could see I was?

In January 2014 I did something I never usually do; I made a resolution, that I would not put myself through the hell of another winter with Anorexia. If you’ve had this condition you know winter is torture, your whole body feels cold every minute of every day, unable to generate any of it’s own heat you sit on radiators until your clothes melt without you noticing, Raynaud’s becomes so bad you wash your hands until water you don’t realise is scalding your skin. It is a season of wearing three layers of leggings and tights under your trousers and still shivering. In January 2015 I did not make that same resolution but I still hoped there would not be another. In January 2016 I made no such resolution, there seemed no point.

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By far the worst year ever for Raynaud’s – I’ve literally only had about two weeks respite even with a good summer

I ended up in A&E until 3am because of re-feeding syndrome, I self harmed properly for the first time in six years, so much time down the drain in one motion. Suddenly I couldn’t deal with phone calls any more, I couldn’t deal with people or being outside if I didn’t have to, I was endlessly broke, my world shrunk to the four walls around me and bland, badly lit waiting rooms as I cancelled every plan I made and withdrew further and further. My only respite were the moments of happiness I had with my family and partner who have bent over backwards and broken themselves to fix me this past year. That and a wonderful group of people I met through group therapy who I have thankfully stayed in contact with and meet up with for peer support (which for us involves a lot of coffee and much needed ranting).

At some point I ended up applying for benefits, something I had pretty always managed to avoid. Despite being eligible in the past through pride I did not apply despite my Dad repeatedly pointing out he had paid taxes for over forty years so that if anyone, especially his own flesh and blood, needed support, it would be there. Seeing no other option I applied and jumped through the hoops, seemingly endless loops put in front of me by the DWP. There is a blog in the works about that experience.

Sometimes I find myself wondering if I can put a cost on the emotional pain, the stress and anxiety that they have put me through and if I did would it add up to more than the meager sum I receive in pounds sterling? I cannot count the number of panic attacks I have endured, the volume of tears of frustration spilt. As someone who is very ill the benefits system seems geared to heighten any pre-existing anxiety or paranoia you may already have. The threatening brown envelopes, arbitrary demands and the ever looming fear that your only means of survival could be stripped away at any point wears you down. In the three weeks that I waited for a face to face assessment I lost half the weight I had managed to gain in the previous six months and the assessment itself left me unable to leave the house for weeks and knocking back Valium just to get out of bed. In the latest saga I now owe £700 I most definitely do not have because of an admin error. This year has felt like one disaster after another.

Over the last few months the outside support has dried up and I am increasingly facing these endless hurdles I face with only my exhausted family to help. Group therapy ended, I saw that one coming at least and could prepare myself. Then I found out I was almost at my allocated number of therapy sessions. When I started with this service I was told I wouldn’t be discharged until my BMI reached a certain target which, although terrifying, was healthy, I was told therapy could be extended if necessary. It wasn’t. Despite my weight not changing and being dangerously low, sub-emaciated for over a year and still the weight where hospital had previously been recommended, despite behaviours popping up like a deadly game of whack-a-mole, despite my failing health and my desperate plea for help I was discharged back to my GP. Now I find myself with 10 minutes every few weeks if I can get an appointment. I have lost my outlet, my safe space and I have been discharged back to primary care sicker than when I entered services.

In a desperately cruel twist of fate just as my therapy was ending and I was trying to process that loss my partner’s grandfather passed away. Grief careered into our lives like a bulldozer with no one at the wheels, ripping through my partner and his family and all I could do was watch helplessly and try and do what I could to ease the raw pain. Futile. I told everyone involved in my care that I was deeply unsafe and at my most vulnerable, that I didn’t know how or why I was meant to cope with all this without help. I was told by clinicians I “would probably get worse after discharge” but “it’s okay, you can always be re-referred”. I’m not sure I would want to go back now though, it feels like that window has closed, I feel more damned to this disease than ever.

So here I find myself, a year on. I always used to half joke that if I ever stopped (running from education to one job after another, always commuting, travelling, rushing, trying to save the world) I wouldn’t know how to start back up. It’s not so funny now.

The much wished for, dreamed of recovery seems further away than ever, my weight at rock bottom, my health precarious and no light that I can see anywhere in this tunnel. Although I am told otherwise I feel useless and a burden. The system does a lot to back up your paranoia and to push your self esteem down further. The endless “scrounger” rhetoric gets through even the thickest skin. All the logic I have at my disposal, my knowledge that I am too ill to work, that I have worked, have contributed, always paid taxes, fizzles and disappears in the face of brown envelopes and the culture of fear the Department of Work and Pensions perpetuates.

I know I will get back on my feet, I am, despite all of this, one of the lucky ones as I have a family that supports me, a roof over my head, a partner, friends (those I haven’t managed to push away) including a wonderful group of girls I see most weeks for moral support. What is hard is not knowing when this will come, when life will start getting better. I feel like I haven’t been able to catch a break this year, positives slipping through my fingers like sand or just out of reach. If the word desperate has come up a lot in this post it’s because I am desperate, for change, for a glimmer of hope, for a break or turn of fortunes. I know I am not this shell of a person, I know I have so much to give and all I want is to go back to work and the real world and be well.

Using online communities as a therapeutic tool

I was invited by Katie Bacon of Online Youth Outreach to write a blog about my experiences of using social media and the online world as part of Youth Work Online’s Month Of Action. At first this seemed like a daunting prospect, after all the online world is very much a part of my life and the distinction between online and offline is often blurred for me, with many of my friends residing in both and a lot of my work being based online. For me the online world is as big, complex and “real” as the real world in many ways and so it was hard for me to pick just one element of this to comment on.

I have used the online world to not only learn about mental health and illness (after all knowledge is power) but also as a therapeutic tool in itself. I have written extensively online but never blogged about the use of the internet itself. I feel that this shows just what a large part of my life it is and something i most likely take for granted. Occasionally I wonder that question that many of my generation have asked; “What did people do before the internet?”. However I do remember what it was like before the boom of the internet as something that everyday people used, in the days of painfully slow dial-up which I first remember using at about the age of 8. I do have a certain amount of nostalgia for those days, before Facebook, Twitter and the internet’s overwhelming presence in just about all aspects of our lives.

However i do feel that the internet came along for me at a crucial time. I first started using it on a regular basis, probably at about the age of 13, coincidentally when a lot of my mental health problems really began to kick off and become a real problem. Looking back it has had an absolutely invaluable impact on my life and emotional wellbeing and provided me with a safe, for the most part anonymous space to explore and try to understand the things that were going on in my head. These were huge things, pervasive and destructive things that I couldn’t seem to physically voice but could type and share with strangers who I didn’t feel would judge me or change in their attitude to me if i disclosed some of the darker things inside going on inside.

I know i’m not alone in this. Every day tens of thousands, in fact millions of people turn on their computers and log onto to countless blogs, support groups and forums to discuss their mental health and seek support. But why? Personally I believe that talking online to someone can be just as therapeutic as talking to someone face to face and in fact can be a lot easier and less traumatic. The online world provides a certain amount of anonymity that is just not possible in the real, tactile world. People can be whoever they choose to be online and the media is often very quick to pick up on the most negative and extreme examples of this but in my experience a lot of people use this in a positive way and i feel it is unfair to judge the majority of people who choose to remain anonymous against a minority of people who use it for less honourable purposes.

Copyright Kari

We must also take into account that a lot of people feel unable to reveal their identities. A lot of them simply cannot take the risk and this is often true for those with mental health problems. People fear that loved ones, friends and co-workers will uncover their mental health problems and this is often not an option because of stigma and discrimination which are still very real issues for a lot of people like me. The same can be said for meeting people from the online world. Obviously caution and common sense are necessary and you should do as much as you possibly can to stay safe and I would in no way recommend giving out personal details to people you meet online but I would say that many of my best friends are people I originally met online on support groups. In fact some of the people I met in the early days of using support groups, some seven, almost eight years ago are to this day firm friends and people who I cannot imagine not being a part of my life.

It was these people and others like them that first suggested and encouraged that I get help for the mental health problems I was struggling with. If I hadn’t had them coaxing me and sharing their own experiences of getting help (I quite frankly wouldn’t have known where to start) I don’t think I would have been able to speak to my parents and say I needed help in the first place and would have continued to keep everything bottled up and shrouded in shame and secrecy.

The internet is also a wonderful place for finding resources. There is a wealth of information out there that is literally right at your fingertips and does not require you leaving the house or even getting out of your pyjamas (a serious issue when you have depression, agoraphobia or other issues). It is also available 24/7 and both the wealth of information and support groups can be an essential lifeline during times of crisis, especially crises which occur out of office hours which is the only time that most mental health services can provide support. If you are stuck on a waiting list for services this can also essential as a stop gap measure and research is continually showing the benefit of online CBT and Mindfulness courses that often aren’t readily available for people who are struggling.

Personally I do not know what I would have done without the resources and the people I have met during my online journey. I know the internet is not perfect but it’s young, we are all learning as we go along and it is alright to make mistakes. And overall I think the internet serves an undeniably useful service. And as a last point I would like to mention a website that I am very involved in both as a contributor and editor, the YoungMinds VIK site which aims to open up discussion around young people’s mental health and is very close to my heart: Young Minds VIK: http://www.vik.org.uk

Katie Bacon would like to thank Kat for her courage, honesty and open attitude to share her personal online journey and experiences. Kat will be hopefully joining the Online Youth Outreach team to co-deliver on the social media training courses over the upcoming months. Also like to thank Kari Brooks for generously sharing her stunning art work for this blog. Kari is an art student in America. Her art collection recently came 2nd place in Rolling Stone magazine. to check out more of her images – http://www.flickr.com/photos/era_halloway

 

First published 1st April 2011:

http://www.katiebacon.co.uk/young-womens-experience-of-using-the-online-community-as-a-therapeutic-tool/