A Year Later…

Around year ago, I wrote a couple of semi-dramatic blogs about when living with an Eating Disorder reaches a life-threatening point.

But for many people with eating disorders, and for a large amount of our time living with them, we are not at this point – and indeed although Anorexia remains the psychiatric illness with the highest death rate, many people with Eating Disorders live for years without any emergencies – but its highly likely that their quality of life is significantly affected.

This is the part I want to talk about today. The times where people think because you look OK that you are OK. The times where people don’t even realise that you have an Eating Disorder. The times where you’re still able to work, or appear to live a normal life. The times where your Eating Disorder is a secret – no-one else’s business but your own. The times where medical professionals are impressed with your “healthy diet” or exercise habits – because they don’t know any better…

A year on from an admittedly very difficult time, on the outside my life looks OK, I don’t look visibly unwell, people who spend a bit of time around me will see me eating and drinking and joining in, I’m working, partaking in hobbies, travelling again, my life isn’t full of medical appointments and eating disorder appointments.

So I got better again then?

Not quite.

So many people, when they knew I was seriously unwell last year said things such as “get well soon”. As someone who has had an Eating Disorder for over 20 years this felt like a kick in the guts. I knew that “getting well soon” wasn’t a likely scenario and that getting well at all may well be impossible. I think people probably meant that they wanted me to look weller, and appear to be enjoying life. Which is nice. Whereas I don’t want to discourage people for aiming for full recovery – and I do think this is possible for some people, however long they have been ill – I know for me this is not a likelihood in the near future or maybe ever.

Last year – after 2 lengthy stays in general hospital, I finally (6 months after being assessed and accepted) was able to access the Eating Disorder Day Service about 6 weeks after the 2nd admission. It didn’t go very well. A combination of being way past the point where I actually wanted to get better, a decline in physical health, a bad decision deciding to go to Barcelona with my friends to a Skate Festival (which cumulated in me refusing to eat or drink in the 30 degree heat and skating at least 7-8 hours a day and therefore an emergency return to the UK and A&E here), my on-going mental health difficulties and my difficult time of year PTSD-wise approaching meant that it was probably doomed to fail from the start. I made it about 5 weeks before being given an ultimatum – start to gain weight or you’re out – which I wasn’t able to achieve (plus I had a psychotic episode around that time which wasn’t ideal). I left treatment with not many options. Still quite mentally unwell, my life had shrunk considerably – I didn’t do anything, I had no physical energy to take part in things, I had no interest in anything. I had no reasons to recover – or the ones I had were far too intangible for me at that time. My physical health spiralled and the eating disorders team withdrew active treatment with me and decided to monitor the physical decline and admit me to hospital if it got to that point (a kick in the teeth if ever there was any – “you’re too ill for our service”). Luckily I have a care co-ordinator who knows me very well and somehow managed to spark something that let me start to think about changing my behaviours and begin to eat a little more and engage in less compensatory behaviours. The eating disorder team started engaging with me again and I followed meal plans and gained the necessary weight with the hope of having some therapy to address some of the underlying issues and body image at some point. I was even put on the waiting list for this.

However, not long after I’d maintained a “healthy weight” for a couple of weeks my time with the service was over, the hope of therapy to address the underlying issues was withdrawn and that was that.

I started to subtly cut things out of my diet and increase my exercise pretty much immediately.

I wasn’t recovered. I am not recovered. My life is plagued every day by obsessive food thoughts, food rules, restriction, over-exercise, body image woes – it rules everything I do. But from the outside there is zero drama. I’m living in a body that I’m not psychologically used to; And everyone celebrates my new found “recovery”… which doesn’t exist. How can one recover from 20 years of an eating disorder by gaining X kilos in a few months? It doesn’t happen and it hasn’t happened.

Although I’ve had many periods of comparative wellness in my life, I’m still plagued by the psychological issues that come with an Eating Disorder – poor body image, crippling anxiety, perfectionism, tendency to over-do everything – I’ve never known a life without these, even as a young child. I might look physically better on the outside – and I might be going through the motions and eating well (and probably even enjoying or being enthusiastic about food), but psychologically I never recover. My thoughts remain the same whatever my physical state.

My first thoughts related to food/greed/myself as a bad person I can time stamp at just before 3 years old, when an older relative had taken a fall in McDonald’s – where we had gone so that I could have a Happy Meal. I remember, at that young age, relating the accident to my greed in wanting a Happy Meal. In my young mind, if I hadn’t have been greedy, they wouldn’t have fallen. Incidentally, similar incidents with elderly relatives falling over toys I’d left out did not evoke the same feelings of guilt. I learnt at a young age that food and greed was something to feel guilty about.

In junior school I remember sitting in school orchestra, looking at my thighs splayed out on my chair (as thighs do when one sits on a chair) and wondering why my thighs did that and I couldn’t see that any one else’s did. I remember doing the amazing PE kit changing routine that assured not an inch of my perceived fat stomach could be seen when changing from my normal clothes. I wore tom boy clothes to cover up my fatness. I sat crossed legged on the floor in school assembly, hunched forward with my elbows covering the fat that splayed out by my knees when I crossed my legs. In Y8 and Y9 I wore a jumper tied around my waist all day every day to cover my stomach and bum.

So it may not come as a surprise when I say that even though I might be “out of the danger zone” and joining in with life again, that I’m far from recovered. I’m keeping myself out of the physical danger zone, just. But life isn’t exactly enjoyable.

My worst nightmare is when someone says “great to see you looking so healthy” or “you’re looking well again”. Just don’t comment on my appearance. Unless you know me very well and the reality of what my day to day is, just don’t comment on it. I don’t want to know how well you perceive me to be, because I can guarantee what you are seeing doesn’t in the slightest reflect what is actually happening inside my brain.

If you do feel the need to comment – things like “nice to see you out and about” again are much nicer. It acknowledges that although it might be taking some effort, I’m at least able to join in on life a bit more now.

For anyone with an eating disorder – psychological recovery is much, much longer than the physical recovery – sometimes by decades, and we probably aren’t getting any help with that either. It really helps when people acknowledge this by remembering that yes, we might be eating, but its probably still really hard!