Jess' Story

Finding Hope after Years of Utter Despair

I want to share my story of eating disorder treatment in the hope that it will help at least one person keep fighting when it feels like there is no way out. I am not recovered but I am a good sight closer to that than I have been for 15 years. I have experienced a lot of treatment, both good and bad, and I know I am very privileged to have had access to that when many go without. But whatever your situation, whether you have a treatment team or not, please take from this that even when it seems that all hope is lost, things can and do change, and the glimpses I now have of life without anorexia are a million times better than I could ever have imagined. It’s not all sunshine and rainbows, but those moments of true freedom make the (still quite frequent) lows worth the pain.

I was first diagnosed in 2009, at the age of 19, but my issues with food began long before that and developed from crippling low self-esteem, anxiety and depression which at some point culminated in the formation of a belief that my only redeeming quality was my thinness. Combined with an extremely difficult family background, characterised by arguments, violence and the emphasis on being thin as a defining factor which makes someone loveable, I began to see food as something which I could control when life was chaotic around me, and utterly convinced that I was the most hideous, boring and worthless person that had ever existed, I believed that the only way that I could become remotely acceptable to others was to lose weight.

I won’t go into all the gory details but in the 12 years since my diagnosis, which prompted my first admission to hospital, I had 8 inpatient admissions, many months on end as a day patient, outpatient treatment and now, finally, a three year placement in a care home dedicated to eating disorders, which has seen the most progress of all combined, and is finally preparing me for life in the real world, without the chains of anorexia.

While I have met some absolutely wonderful professionals, some of whom have stuck by me throughout (I particularly want to mention Dr L, my consultant for 11 years who fought tooth and nail for me over that time), I have also experienced the inadequacies of treatment in the UK and, I feel, been failed by certain services. Long waiting times spring to mind, as do admissions of more than a year before having access to individual therapy, and the need to be sent to units all over the country due to a lack of local beds. At one point, at the age of 25, I was written off as a hopeless case, told I would be a revolving door patient for the rest of my life, and the only option was to have a PEG tube inserted into my stomach and to remain at home waiting each day for a district nurse to administer a feed. Bear in mind that I was not resistant to treatment, nor was I a critically low weight at the time. The problem was that I was repeatedly taken into Eating Disorder Units, forced to gain weight rapidly and without psychological support, then thrown out into the community with limited support and no idea how to cope with life and food by myself. I feel such regret that I was not referred to my current placement at that point, as it was another three years before I finally got the treatment I needed. In fact, it was considered, but dismissed because there was a waiting list and, I can only surmise, they were so desperate to get me off their books that they didn’t want to wait.

I am incredibly lucky that three years later I finally was granted funding for my current placement (again this was a huge struggle and took nearly a year from referral as several CCGs and other agencies fought not to have to cover the cost). This has truly changed my life, allowing me to work, socialise and build up the life I want while engaging in extensive therapeutic and OT work in order to gain the psychological strength and the skills I need to live in the community. However, this is one of, I believe, just two settings in the country which offer this type of support. Yet, it is proven to be far cheaper for commissioners than the constant stream of inpatient admissions which I and many others have had instead. We need more treatment like this, and we need it to be accessible to all those who need it. Community-based support is, in my experience, far more effective in achieving long-term change in behaviour and outlook than being shut up in hospital for months on end, forced to gain weight but not having psychological support, and being disconnected from those things that make life worth living, such as work, education, leisure, family and social life. I got to a point where I could not imagine a life outside of hospital, I had lost everything, had to leave jobs, zero social life, strained family relationships, finishing my degree by the skin of my teeth and ending up in hospital shortly after. This left me with nothing to fight for, and of course it was inevitable that when I was discharged to a life which was miserable and empty, I turned once again to the only coping mechanism I had – anorexia.

Life has changed for me now. I have been working for 2 and a half years in the career I have always dreamed of; COVID aside I have developed a social life and friendships; my relationships with my family are the best they’ve ever been; I am in the process of renting my own flat and, crucially, I am able to feed myself without constant supervision and support. I have a way to go in some areas but I am confident that I will never go back to how I was, I will not end up back in hospital, because I have so, so much more to live for. I was in a very, very dark place for more than a decade, at times feeling that taking my own life or dying in my sleep would be preferable to the hell in which I was living, but I now have that very elusive, but incredibly powerful, thing which I have always wanted – hope.

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In 2013 my very worried mum took me to the doctors. I was severely restricting what I ate, and my weight was plummeting. I was also exhausted all the time, my periods had stopped, and I had become pal