I’ve had an eating disorder from a very young age. My difficulties really started from about ten years of age but I’d gone through some trauma before then too.
When I received the diagnosis of anorexia nervosa I don’t think it sunk in for many years. I have received some good community support and once they managed to get me into a residential unit to avoid hospital admission, which was better and was more helpful but things got worse.
Mine is a very long story but I’ll try to keep it short.
My physical health has got in the way on many occasions resulting in lengthy general hospital stays (in the UK) but I always managed to eat a bit better in there (not an eating disorder or psych hospital). I’ve also been at home extremely poorly and managed to avoid hospital admission to an eating disorder unit (EDU) but not without it being constantly asked of me. My team really wanted me to go into an EDU and I was adamant unless I had literally no choice I wouldn’t go in.
However there I was at home restricting, exercising, taking laxatives, collapsing on the bathroom floor, hooked on diuretics and all of that I still carried on, even after my cardiac arrest! Nothing was going to stop anorexia – Anorexia had me trapped!!!
I finally agreed to go into day care and this is the part of my story which is most relevant to why things need to change in eating disorder treatment.
My first day there they told me I was too unwell and I needed an inpatient bed. How could they agree to have me as a day patient then at the first day say otherwise?! I was dehydrated and my risks were high. However, my community team begged them to give me a week to see how I got on.
The first thing that I struggled with were drinks. I was dehydrated yet all drinks were restricted. I had constant headaches and migraines, I felt drained, I never felt physically better because I constantly felt sluggish and dry! The headaches some days were unbearable!!!! I didn’t ever water load until I went in there and then I started to really struggle with it for the first time. I used to go home at night and drink loads and in the morning I would try to drink more too, which is where the water loading started – all because it had been restricted, simply giving anorexia more power to destroy me.
We had groups, often run by health care assistants who were doing their best but what we needed was groups by psychologists. When I asked for that it was seen as if I was complaining, yet I wasn’t, I was trying to look at what would help me get better.
When I was triggered by something my psychologist said to me it was seen as yet another complaint! It again was something that was just making the anorexia worse. She referred to food and linked it to my past: something I hadn’t done so it made it all so much worse!
Regarding the food – I was started on an intro diet due to the risk of re feeding syndrome and I was coping with this. I was gaining on it too. Then they increased my portions but nobody told me. That was one of the worst memories I have and I’m thankful to a friend I made in there who helped me through. We sat there for an hour and a half. The staff member offered no support at all, so I was lucky I had her.
Often others would ask for an extra bit of food, such as a biscuit, as they were starting to get hungry but they were denied that because they saw it as bingeing!
My friend wanted to try puddings – she was excited and felt ready but they told her she couldn’t as puddings were only allowed if you weren’t gaining weight and they thought she was going to start bingeing just because she asked for them.
I learnt not to ask for anything but inside I really wanted to try new things but I knew I couldn’t ask and that’s why I massively struggle with things like that now. The foods were all processed, not fresh like they were meant to be.
The dietician barely saw me. The occupational therapist was good and realistic but the others didn’t agree with things she would have. In all honesty, I really struggled and then out of the blue one day when I was having my review meeting they sprung it upon me that it was my last day there. Why ??? Because I needed more than they could offer – I needed inpatient care and I wouldn’t agree.
That day was a day I really felt motivated to change but they didn’t want to listen as their minds were made up. I was shattered. I’d made my own lunch that day and I had made a decision in my head to try to recover and yet, no, they weren’t willing to support that and it was either go somewhere else to an inpatient bed or nothing. They said I just complained (I honestly didn’t ). Part of me feels that they felt threatened by me and my position (my job). I can’t think of anything else as when they found out what I did their attitudes changed.
At no point was I listened to and at no point did they consider how I would manage at home – everything I suggested was wrong.
I was told it would be individual and personalised yet it wasn’t and I had to have the same as everyone else, although those patients ready for discharge were allowed a say and allowed choices.
As I was only in day care, I suggested maybe I could try things I wanted to work in, like them, but I was told no – I had to have the same as the newer people: a diet just based on weight gain.
I struggled with gaining but nobody helped me with that and nobody helped me challenge it. It made me worse. I was so depressed when I left there and I couldn’t see a way out of the hell I was living. I was no where near to recovery and I was gaining weight but my head wasn’t recovering. I left and I started to go downhill again hugely.
Many things crossed my mind but it was my work, my two friends and an individual on the online community that saved me.
My work have been amazing to me and they agreed to fund private therapy and I found a wonderful therapist. Without them I don’t think I’d be here today as I honestly believe it would have got too much and I’d have gone because I was at a point I’d totally had enough and I couldn’t cope any longer.
A real turning point was my son – when he commented on something, it hit home how poorly I was. But without the help of work and my therapist, I wouldn’t be here, I really wouldn’t. I’m lucky I have my therapist, my friends, work and the online community.
Had I have stayed in day care or gone to inpatient again I’d have simply sunk into a deep depression and I’d have been even worse again. Those places don’t help people because their methods are ancient! In fact other friends I met there have all relapsed just like I did!
Something needs to change!
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