We need to focus our fight on the eating disorder and not the ED professionals

Summary: I totally support everyone who campaigns for better professional support for those with EDs but I also know that sometimes, we wrongly focus our attention and anger on what we cannot get from those institutions rather than what we can get from the rich and diverse community of the recovering and the recovered.

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After reading yet another story about someone who was turned away from receiving eating disorder treatment because their weight was not low enough, I am convinced that we the recovering and the recovered need to focus our fight first and foremost on the eating disorder rather than fighting institutions and professionals who can’t or won’t adopt new approaches.

The NHS is dying people. Money is scarce. There is no new pot of money to enable all sufferers to be treated. Should we linger in misery whilst we wait for the NHS to be resuscitated? Our lives, future, wellbeing are too precious and fragile to be left on waiting lists.

Even if and when you do get NHS/private treatment in the UK, it veers from being full of compassion to being totally devoid of compassion. It veers from superb advice to awful advice. It veers from encouraging starvation or undereating in inpatient units to forcing lots of food down people’s throats who are not mentally ready for that level of intake. It veers from saving lives to watching others worsen. It veers from saying ‘I/we care’ to saying ‘you are on your own’.

What is your bloody point?

My point is that in the UK, there is so much inconsistency that we, those with EDs, often end up wasting time looking or waiting for professional help which may or may not be the key to our recovery. In the interim, our condition worsens or we lose our focus because our energy is spent fighting people and institutions rather than fighting the ED.  We end up no closer to recovery.

I am tired of hearing the desperate stories of people told their weight is too low or too high to receive treatment.

I am tired of professionals who have become so immune to suffering that they only take notice when a person looks like they are at death’s door or on the verge of suicide.

I am tired of we the recovered and the recovering looking outside for help and not receiving it.

I am tired of wasting energy looking for answers outside the ED community when there is such wealth inside it.

I will add a caveat at this point to temper this post. I was fortunate enough to receive both daycare treatment and inpatient treatment, although fortune is a strange word to use when the process of refeeding feels so tortuous.

I say this because I know that there are some who are desperate for this kind of treatment. The truth in my case was that I did not recover with this help. I and many others did not and have not recovered with professional help. You and I have heard about some of those people, who are constantly in and out of IP units or who had professional support but are now languishing in ED misery. I was one of those people. If IP or daycare or therapy was a panacea then all those who had ever had such treatment would now be recovered.

Professional help can be an invaluable aid to recovery. I support people who choose to use it. I truly do. But, I also support those who choose not to. I support those who believe that their energy is best spent on seeking solutions within themselves and the ED community. I also value and appreciate the work of professionals who do their best to help those with EDs. But, I decided to stop looking outside for my recovery. I chose a professionally UNPROFESSIONAL RECOVERY.

Why chose an unprofessional recovery?

I chose to recover in this way because after the way that my time in treatment ended, I was quite frankly, fed up of dealing with professionals. More importantly, I realised that the only way to get better was to start doing it, start eating. No amount of talking was going to cure it. In fact, that is what is wrong with therapy to some extent. You can spend months talking or not, about your feelings, but never having to face the fact that what you have to do is eat and eat shitloads of food for quite some time.

I appreciate all the help that I was given. I will never forget the compassion of those who did all they could to help me. But, truth is, it was not a perfect process and I was not a perfect patient. The best thing treatment did for me was save me from the depths of depression. It also at times,  worsened my ED symptoms because of the things I learnt to do which I had no knowledge of prior to treatment. It is for the most part, a one size fits approach but that dress did not fit me. I honestly believe that the true work of recovery begins outside of the treatment environment.

Inpatient, daycare, therapy, none of that will cure you of an eating disorder. Some people who are professionals give the wrong advice because they have not had an eating disorder or had to recover from an eating disorder. At points in inpatient treatment, I was bloody starving and begging for food but told I had to stick to the meal plan. This only fed into the restrictive mindset which fed into the purging. How can you tell someone who struggles with restricting that they need to simply tolerate that hunger. They are professional hunger tolerators for goodness sake.

At times, I was also too full and that was a huge struggle. At times, I was told that the way to push through this was to distract, distract, distract but how long can we distract ourselves from painful memories or feelings? At some point, we need to confront it. Cry through it, scream through it, write through it. Whatever will help you tackle it without resorting to unhelpful behaviours.

Professionals don’t know it all. Or if they do, they sure as heck don’t tell it all. These are the things professionals never told me about ED recovery but which I learnt from the recovery community and from my own refeeding:

  • extreme hunger may bite you in the butt during ED recovery. Do not be alarmed. It is not binging. It is just the body taking back what we took from it. It will pass. Be still.
  • oedema can last months not weeks.
  • you may suffer from severe joint pain which will take months to settle down. I struggled to walk for months after I started refeeding and my feet are still not the same.
  • you may find yourself needing to urinate frequently in the first few months of refeeding, especially at nighttime
  • you might put on lots of weight around your stomach but this will eventually settle
  • you may go way past what you thought your normal weight was but the body is just taking an insurance payment. When you prove yourself trustworthy, you may get a refund.

In the end, I found my way to ‘recovering mode’ by listening to those who had fully recovered.

Some choose not to go for full weight restoration. I couldn’t do that and nor did I want to. I had spent too long on this shit already. If I held onto just a little bit of the restrictive mindset, it would have led me down the rabbit hole of death. I am still working on my recovery. I know that my recovery is dependent on my ability to keep eating irrespective of my weight. I am at the highest weight I have ever been but I cannot get complacent.

In IP and daycare, you may reach a point where you are told you can now maintain your weight. For me in IP, that weight was still a low BMI. What kind of message does that send out to people with eating disorders? That it is fine to maintain a low weight. How will that help us live a full life? In IP in particular, the aim is oftentimes to get a person to a safe BMI even if it is still an anorexic BMI. This fact will never sit well with me. I know it must be hard for professionals working with people who seem determined to kill themselves slowly but surely they ought to aim for more than we do. Surely their job is to keep faith and hope when we have none left.

So what did your unprofessional recovery entail?

  • Making the decision not to wait any longer for professional help before beginning recovery.
  • buying books from people who had recovered to see how they did it.
  • eating seven or more times a day without ceasing for 4 months.
  • eating way more than the daily recommended calories for men and women put together and way more than I ever ate in IP.
  • not listening to a doctor who told me not to go too far the other way (into obesity)
  • relying on a family member for practical support rather than professionals for support because the latter support is from 9 to 5 only.
  • Using my GP’s support. She has been a fantastic help to me and encouraged me to keep going without professional help because she could see that I was doing way better without their input than I had ever done with their input.
  • learning to live with massive weight gain during those first few month
  • completely stopping restriction and purging
  • telling myself out loud, even at the height of the purging, that I was going to recover
  • KNOWING THAT ULTIMATELY, MY FIGHT WAS NOT WITH SERVICES BUT WITH THE EATING DISORDER
  • spending some days in tears, hiding under a duvet or watching movies to deal with the bad days
  • following blogs of people who had recovered and reaching out to them for support.
  • asking for help for the depression when it started to affect my eating again

Are you saying we should not fight to get better support from ED professionals/institutions?

NO.

What I am saying is that what put us in this shithole of an ED was a mindset and that the only thing that will get us out is a shift in mindset. For some, professionals can help with motivating and encouraging us. I know that for me, especially in IP, there were some amazing staff members who kept telling me that ‘I could do it’. I didn’t believe it for myself and that was my biggest obstacle to recovery.

What I am saying is that we need to look for more answers within the eating disorder community than outside of it. I totally support everyone who campaigns for better professional support for those with EDs but I also know that sometimes, we wrongly focus our attention and anger on what we cannot get from those institutions rather than what we can get from the rich and diverse community of the recovering and the recovered.

Some may be upset by the content of this post and it may only be read by a few people but I’m not bothered. If this provokes even 1 debate or gets 1 person, professional, carer, sufferer or struggler to think again about the recovery process, then so be it.

Finally, I need to state that there are some ED professionals and recovery coaches out there with first hand experience of recovery.  Their knowledge and support can be life-saving. I know. I have such a person in my life as a friend.

What would you recommend?

1) Let your GP know what you are doing so they can monitor you medically.

2) Check out some of these resources:

Emily Troscianko –  https://www.psychologytoday.com/gb/blog/hunger-artist

Tabitha Farrar – https://tabithafarrar.com/eating-disorder-recovery-podcast-2017-feed/

The Bulimia Help Method by Ali Kerr et al

Eliza Oras (Follow the Intuition) – https://www.youtube.com/channel/UCxWY-0as5iyX36Uy7gPLyBg

@hllylzbth shares her recovery journey on Instagram which she did without professional ED support and really inspired me to just get on with the inevitable weight gain.

Alternatively, you can ignore all of my suggestions and find your own way to recover and then share those with others in recovery.

Whatever you do, just remember who the enemy is.

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