The Paradox of Eating Disorder Services

As some of you may know from Instagram and my previous post, I had an anorexia relapse starting a couple of years ago.

However, independently I was able to gain some weight back after the treatment services offered me was inaccessible to me, and I had actually reached a point where I was managing relatively okay.

I had what I would describe as a ‘functioning’ eating disorder. My weight was just about healthy and relatively stable, but I still had to live by certain food ‘rules’, was obsessed with weighing myself and had ongoing body dysmorphia.

Over the last couple of months, I’m not exactly sure why, but things have deteriorated very quickly and if I am honest I would say I am probably in my worst relapse since 2016. Things are tough.

In April, I decided that I was tired of living with this constant background noise of what I could and could not do, how much I should weigh and how much I should be moving around. I asked for a referral back into the ED team and was told essentially that I declined the group offered to me in 2017 (which I couldn’t attend because of work) and had a healthy BMI, so I did not meet the criteria for treatment.

Since things have gone downhill so quickly, I’ve been back and asked for another referral. I truly do want this to be over, I hate it. So now I play the waiting game. I am, quite honestly, entirely stuck, and I feel like a lot of that stuckness is their doing. I know now that in order to access treatment I need to fit into the criteria for anorexia, which I now do. I’ve been backed into a corner. I tried to ask for help before and was turned away, so what other choice do I have? I have absolutely no inclination to try to make any positive changes myself because I honestly feel like it will end up being to my detriment as I will probably get turned away again.

And while I sit and play this waiting game, my list of acceptable foods is shrinking whilst my list of fear foods grows longer and longer. I am constantly weak, I can’t sleep, my stomach hurts with chronic emptiness. I can’t concentrate on anything and spend hours a day watching cooking videos on the internet, staring wistfully at all the things my mind won’t let me eat.

My functioning is waning as my BMI drops. Recently I’ve noticed bits of my hair have started falling out again. My heart rate is frequently all over the place: at 55 one minute and 190 the next. I am not well and I know this, yet still I can’t stop myself nor do I feel I can until services take note of how difficult things are for me and how desperately I am reaching out to them for help. I am now underweight, and I feel like I have been backed into a corner by having to reach this point.

Services need to change and adapt to catch up to the fact that eating disorders are incredibly complex and need a thorough assessment before agreeing what treatment pathway, if any, is appropriate. A piece of paper with a summarised list of symptoms should not be enough to turn someone away for, without having spoken to that person face to face.

I have now had a letter saying I will be offered an assessment; though I don’t know when this will be I am so relieved that I am getting one that I don’t mind waiting just a little bit now. I feel like the race is on to lose as much weight as possible before they see me though. They make me feel like I have to prove to them that I am struggling, rather than just taking my word for it.

If they don’t accept me at all for treatment, I don’t know what I’ll do. I’m trying not to think about it too much because if that happens I think I will entirely give up hope altogether.

So please, keep your fingers crossed for me for good news, and I’ll let you all know if I make any progress.

10 comments

  1. I am terribly sorry you are struggling with this. When I went for substance abuse, they wouldn’t accept me clean for a month and so after three days of sobriety out of 20 years of hardcore use, I used to enter rehab. Something is so wrong with that. A problem is a problem regardless of its severity.

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  2. I am so sorry that things have not changed as far as ED treatment goes in the UK. I have heard a lot of stories of people restricting and losing weight to access services and it should not be this way. Please do not continue to harm yourself further as a way to access treatment which may be at best substandard. I have been in your position in the past and have blogged about this issue as well. Your fight is really against the ED rather than on services which seemingly refuse to change in the UK. When we make services the focus of our fight, we lose perspective and we lose years of our lives. Ultimately, it doesn’t matter how we recover or who helps us get there as long as we get there. So whether services, or yourself or support of family and friends, ask yourself does it matter who helps me get there?

    It was recently suggested to me that I re-refer myself to ED services but I know for me, that would be a terrible game to play. I have managed to restore my weight without the help of services and whilst my mind is still a mess to some extent, I know that services are not the holy grail that we sometimes believe them to be. I had the practical support of one family member for about 6 months to help me with refeeding. I made more progress than I ever made in inpatient or daycare or outpatients.

    I don’t want to dog all over ED services but my experiences have given me an insight into the reality of it. Your life matters to your loved ones and to those you share your truth and your journey with. Your ability to share your truth is helping others. I know it may feel like you have to prove a point to services but for them, it’s just a job. For you, it’s your life. It’s your future.

    I hope this has not come across as preachy and if it has and I have overstepped the mark, please forgive me. I just know that I lost almost a decade of my life trying to access help and then getting mediocre help and I don’t want to see others do the same. I wish you well.xx

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    • It’s not come across as preachy at all don’t worry! I know previously from accessing both inpatient and community ED services that they have helped me hugely in my recovery, which I why I am so keen for their help again. With that said, I know I need to do most of the work myself. I just need somebody to be accountable to, and I don’t feel comfortable relying on anybody close to me to do that. They’re so so complicated aren’t they?

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  3. Agree completely it sucks need to get worse to get help . I agree need to loose more for them to realize the seriousness of the condition . Here for u . keep fighting ur worth the help . Thinking of u x

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  4. Hi Cara, I’m so sorry you’re going through this. Accessing services is way too difficult! I’ve been struggling on my own because I can’t afford therapy and I’m still not a resident of the country I live in so I can’t access any of the “free” government services even though I pay my taxes… One thing that helps me is this online support group I found held by The Looking Glass. It’s completely anonymous and people are very kind and supportive there. Maybe they have times you could attend? I hope you start feeling better soon and can access help ❤

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    • Thank you for the recommendation, I will have a look! I’m sorry to hear that you’re having similar difficulties, how frustrating for you. I hope you somehow get the support you need eventually 💗

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