I’m Not Okay With The Stigma That Still Surrounds People With Eating Disorders

Sadly, stigma about mental illness is still very much alive and kicking. Admirable efforts from charities, the NHS, individuals, social media, the government, schools, researchers, celebrities etc. are, undoubtedly, making a difference (hurrah) but we have a long way to go until we neutralise stigmatising beliefs, and harmful view-points.

Individuals, who have an eating disorder, I feel, have to combat stigma from wider society and from health professionals.

We all know that myths and misinformation surround public (and professional) perspectives of eating disorders.

Eating disorders are caused by the media and are a lifestyle choice rather than a serious mental illness. NOPE.

Eating disorders happen to middle class girls, and are commonly a teenage phase or a fad.

If you have an eating disorder, you’ll be really thin, otherwise you are just fussy.

I could carry on for a whole bunch of time listing and debunking myths, but I am taking a punt and guessing that if you are reading this, you agree with me anyway and if any of this has made you think ‘oh hey, I didn’t know that, cool’ the links above can aid you with a whole load of internet-rabbit holing into eating disorders education.

So, like I mentioned in my first post I became ill when I was pretty young, and I am now kinda-old-ish. Like, properly into adult-ing life phase. I have therefore spent more years chronically ill than I have ‘kinda recovered’. I have been pretty much recovered for five years now. In that I hold down a demanding career as a health professional. I also have friends, and my eating disorder no longer totally rules all my social activities. However, as may be clear from my previous posts it, isn’t all tickety-boo and I still struggle a lot with the thoughts in my head and the distress this causes. Nine months ago I was struggling quite a lot and so my GP suggested a re-referral to an eating disorders service for a top up of all the help I have been privileged to receive previously.

I waited 9 months for the initial screening assessment. The assessment itself was decent. The woman I saw was kind, validating and damn good at her job. She was also, technically, retired. She has returned to her post because there is no-one to cover her role. At the end of the appointment she offered me some more support.

Currently, the waiting list is 12 months.

Which really sucks. I am pretty sure I can toddle on my little way for another 12 months without it having a hugely detrimental effect on my mental health and well-being but this will not be the case for everyone. Eating disorders have the highest mortality of any mental health condition.

This list is not priority based, other than for those in seriously life-threatening situations. And of course, only those deemed needing a referral even end up on this ridiculous waiting list.

Which really sucks. Eating disorders hugely affect quality of life, and mental health and also have numerous potential long term physical complications even if you are at an okay’ weight and do not ‘look’ like your stereotypical ‘emaciated anorexic’.

Why?!

A lot is to do with stigma.

Services are few and far between. Training is patchy. I am a health care professional working in mental health services. The training we receive is very comprehensive, aside from when it comes to eating disorders which have been conspicuous in their absence from our curriculum.

People cared for in non-specialist services (which is common due to a lack of such services and poor funding) can often receive ineffective, non-evidence based care due primarily to a lack of education.

Doctors, nurses and all members of an multi-disciplinary team see eating disordered patients, in my experience, as difficult to care for. Despite being recognised by recognised medical indexes as real MENTAL HEALTH CONDITIONS, there is still a feeling that it is simply a ‘choice’ and patients’ needs to ‘just eat properly’.

I am not okay with this.

If I had longer, to add to this already really long blog post I would love to describe some of the brilliant, clever, funny, kind people whom I have met over my years as a patient, and as a professional. I feel this might help a bit to change the perception of the patient community as difficult, angry, sad, no-hopers (and that is prevalent, many times I was told I would never get better, despite the fact part of the role of a nurse is too hold hope for our patients when they cannot envisage it themselves).

I am going to continue combatting this when and where I can. Loudly. Persistently. Hopefully in a way which will eventually incite at least local change.

If you have an eating disorder, please know you are never beyond help, or hope. There are some wonderful, dedicated and brilliant professionals out there.

If you work in health care, mental health or services where you may come across patients with eating disorders please consider how you can help. If you are a student health professional, don’t discount eating disorders services as a challenging but brilliant, worthwhile sector to work in.

If you want to read pretty much what I just said in a more articulate way then read this.

(p.s. If you feel like you have an eating disorder then you might want to click here check out the work the b-eat offer)

Fat Is Not A Feeling!

I walked into the group therapy room. There was the usual arrangement of hospital chairs, you know the ones with uncomfortable but well cushioned seats, and threadbare arms. Ten identical blue, miserable looking chairs in a box room with light blue walls. And the flip chart board. We all piled in, and as usual an actual physical alteration nearly occurred over a silent squabble for the chair nearest the door, preferred as it offered a fast escape. 

 

Our therapist swished in, with red lipstick and a smile. 

She removed a marker pen from the pocket of her oversized cardigan. 

On the flip chart board she wrote, in neat yet accusatory capitals: 

FAT IS NOT A FEELING. 

She turned to us. 

Looking both defiant and proud.

“Discuss”. 

 

That memory is a clear one. And it continues, but the rest isn’t particularly relevant. Short version: we refused to “discuss” for a most of the session. Two people cried. The girl in The Best Chair bolted and was steered back into the room by a harassed but kind nursing assistant. An animated discussion was entered into, ten minutes before the end, when lunch was due, as usual.  

Now, more than a decade on those accusatory capitals often pop into my head. 

Today I was at the coffee counter and eyeing up a lemon muffin. I shouldn’t, I thought. Then – FAT IS NOT A FEELING. So I bought a muffin. Other times I am trying on my sixth pair of identical jeans. Almost in tears, plucking at my stomach and thighs. FAT IS NOT A FEELING. So I go get dressed away from the mirror, and get on with my day (I feel very thankful that I am now ‘recovered enough’ to do that. To walk away from the hurricane. To step out of the disorder and get on with other things. It is a choice, not an easy one…but there is a time it was not like that and these thoughts would sweep me away swallowing up days at a time). 

 

So – I learnt a positive lesson, right? 

Except 

I don’t actually really get it. 

It has just become an internal mantra. 

Because words can have power even if the meaning is lacking, or twisted or not fully relevant. Words can become a comforting bead string of letter sounds and syllables. Words can ignite memory. 

 

I do feel fat. 

I like many others, with and without eating disorders I have fat days. Sometimes my thoughts, activities and goals are driven by the feel the waistband on my jeans upon my skin. Also, fat feels different to sad, or lonely, or agitated. It contains a little bit of all those things, alongside some self-loathing and regret….but in many ways I refute those capitals. I would like to go back to that room, those chairs and my smiley swishy therapist and say…yeah, but, wait…..

 

Does it matter? 

I don’t know. Probably. 

I’m not writing this as a self-indulgent “poor me I struggle sometimes” post, and nor do I want to discredit all the amazing posts on this very subject that explain, more eloquently than I, the many ways you can articulate the route of emotions lurking underneath and within the feeling fat. I guess I’m just musing. 

Feelings, thoughts, actions are all intricately linked and intricately difficult. Spikey. 

Sometimes I think I didn’t ‘do’ therapy properly because I was argumentative, sullen, often disengaged and at other times treated it like one big joke. I limped my way through treatment fully intending to relapse upon discharge. So I think the fact some key messages have remained with me is a positive. A positive nod to the skills of the professionals who treated me with kindness and respect when I didn’t want it and at times didn’t deserve it. 

I ate the muffin despite that little voice in my head that still tells me not to. I don’t know if it will ever really stop. I doubt it. But the muffin was a decent one and worth feeling a little bit sh***y for a little bit. And it’s all liveable with. Manageable. Mostly okay. 

I feel silly, often. If my mental fat is not a feeling post it note helps, that’s okay though right. And I’m probably not alone in this habitual quirk…or similar. 

This month, I’m putting extra effort into eating enough whilst I’m doing a crazy amount of work shifts super regularly. I feel better for it physically. Less faint-y. No ringing ears in important meetings. I don’t want to cry with tiredness daily. I’m struggling to accept the physical changes which my best friends promise are negligible but positive. Fat is not a feeling, and later I’m going to eat a slice of carrot cake the size of my face. 

 

(p.s. If you feel like you have an eating disorder then you might want to click here check out the work the b-eat offer)

Eating Disorders and My Recovery

Disclaimer: These are just my thoughts and opinions and there is no one right way for anyone when wading through the murky waters of eating disorder recovery.

Right now it’s just gone 8am on a Sunday morning. The mornings are getting lighter. I’m in a fab mood and am sipping on an overly hot salted caramel green tea in one of my best mates flat. The green tea is significant.

I have an eating disorder and over the last 14 years my eating disorder has taken many forms. I was diagnosed with anorexia nervosa at a young age and that proceeded to wreck the majority of my teenage years. I have also been a binge eater, and my eating disorder has morphed into bulimia on and off – primarily during attempts to weight restore. I’ve been “recovering” for over five years now which means to many I don’t look as if I have an eating disorder…my weight is pretty damn stable most of the time but my mind remains a difficult place where food is concerned.

Healthy eating is difficult when you suffer from disordered eating, or at least it is for me. I achieved weight restoration primarily via Milky Way Magic Stars, flavoured lattes and pizza. Other than vegetables hiding in pasta and soups I did not, and would not, eat anything healthy. In fact, until recently I tried my first piece of fruit having last had one six years ago. For me, “healthy eating” was a dangerous game. It meant that as well as willingly eating, I was agreeing to NOURISH my body. To give it some good stuff it could use to make me feel well. To look after it. And I was totally not cool with that idea.

In my early twenties I realised I needed to put some weight on and sort my head out a bit so I had enough emotional space to actually live. I did that and I am damn proud of that. I am happy, I am achieving. Objectively, I’m in a very decent place. Go me! However, if I was going to eat I was going to punish myself by eating “junk” and for five years to feel awful about it on a daily basis. The eating disorder logic is a tricky and nasty beast.

Recently I have had an overhaul. Go me, again. In the last two months I have developed an appreciation for hipster herbal teas. For fancy soups. For quinoa (which I can’t pronounce). I am eating cereal with various soya and nut milks and spending disgusting amounts on a weekly shop which now includes fresh fruit, veg and strange raw fruit cereal bars. My skin is clearer, I don’t get a massive sugar crash at 3pm and want to sob with tiredness. My terrible concentration is incrementally improving with each banana.

But don’t get the banners and balloons out yet because although this looks like the best ever stage in recovery I have ever achieved, I am also aware that my eating disorder remains in the driving seat with this one. And I know that because it wasn’t that I sat down and had a long hard think about loving my body and then made all these changes. No, I woke up one morning and impulsively and very decisively cut out all the “bad” food. I spent hours online looking at raw vegan blogs, started cooking again without the aid of a microwave and cried about how much I hate my body.

I’m working on using this place that I have found myself in to make actual healthy choices. I am trying to enjoy new foods. I am trying to like my body (or at least accept that it’s much more useful to me when weight restoration than when starving) and most of all I am trying to remind myself that eating cake or pizza is okay: it doesn’t mean I’ve failed. That all food is healthy when balanced and that healthy eating is not another form of restriction. I don’t need the 12300 calorie rule about food to get through a day and the sky won’t fall on my head if I purchase a snickers.

What I wanted to highlight in this blog post is that for some people what looks like “good” food choices can be tricky. I am fairly intelligent and thanks to years of therapy I can tell you pretty clearly at any point why my eating disordered logic is a little faulty and problematic. Making changes to that and challenging that logic is harder. It scares me that I can wake up one day and somehow my eating disorder alters all of my well established rules around food. When people congratulate me for the very obvious shift in my eating patterns I sort of feel proud, but a lot of the time I also feel frustrated. I am not that much in control of all this, and part of me feels like I am just waiting to see what happens next. That I’m merely a passenger in this ride. Of course, I grab the wheel occasionally to make sure I remain at a good weight. I make sure I eat enough during the day to do all the stuff I need and want to do, but mostly I feel a little bit apart from this and a little fearful.

Flexibility is okay. Only eating kale or only eating Mr Kipling cakes for a week is less conducive to a balanced head space and I am taking it step by step. Sometimes I berate myself for still being in this strange place five years on – but for me it is a process.

This has felt a bit like a Sunday morning vent that would be better off confined to a notebook rather than shared on a website but at the same time I wanted to give an honest account of what recovery is like, at least for me. You don’t need to look classically eating disordered to have an eating disorder. I’m no longer depressed or anxious and for that I am incredibly thankful, but I still struggle with living alongside my eating disorder.

I’m not giving up. And I do have hope that all this mental trickery will continue slowly fading and losing its light. That one day I will be able to live totally free from it. Right now though, I am going to finish my brew, eat a banana and some pecan nuts and then just go for it and arrange a night to eat pizza with friends this week. True recovery never feels comfortable, easy or safe. Actually challenging the eating disorder is hard and I need to remember that that’s okay.

(p.s. If you feel like you have an eating disorder then you might want to click here check out the work the b-eat offer)