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.
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.
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.
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.