I speak a lot about my mental health. It’s my job. But on of the areas I’m less likely to talk about is my Eating Disorder. For some reason there is a lot of shame caught up in every aspect of my Eating Disorder and I tend to downplay its effect on my life, maybe because of my fears that people will turn round with the dreaded “but you don’t look like you’ve got an eating disorder” comment.
I do have an eating disorder. And I don’t think I’ve ever not had an eating disorder. The earliest memory I can place a time stamp on was when I was nearly 3 years old and it is to do with guilt surrounding food (specifically McDonald’s) … 3 years old. My main memory of my primary school years is sitting in orchestra worrying my legs were splaying out too far on the chair, complicated dressing contortions in the PE changing room as I was so afraid of people seeing my “fat” body (for the record I was a perfectly normal, if a little short and ginger-haired child), sitting in certain positions on the floor in assembly because I worried that having to sit cross-legged made my knees look fat, feeling like I was never good enough because I was fatter than all the other children. I never spoke about my feelings around weight – I kept all these thoughts inside until I was 17 and it started to manifest itself as an eating disorder – since then I’ve starved, calorie counted, over exercised, binged and purged, thrown up in secret in a desperate attempt to appear normal, I’ve abused laxatives, taken diet pills, restricted fluids and most things you can think of. I’ve been overweight, underweight and normal weight. I’ve had a resting heart rate of 37, blood in my vomit, blocked every public toilet in a Jordanian hotel I was staying in, gone to Morocco and eaten only cheese sandwiches, gone to Mexico and eaten only cereal. And that’s only scratching the surface. This eating disorder has affected every inch of my life for 2 decades.
My first career was as a primary school teacher. I used to look around the classroom at my 30 charges and wonder how many of them were silently having similar fears. I think that’s one of the (many) reasons I left teaching.
My eating disorder is totally separate to my other mental health problems, but yet it’s intrinsically interlinked with them all and everything in my life. I’ve always had an eating disorder and I believe I will continue always having an eating disorder. But it doesn’t mean that I’m always actively IN my eating disorder. I can go years doing pretty well, but I’ll always be vulnerable to sliding back under those quiet and enticing waves.
I’m nearing the tail end of about 5 months of OT support from SYEDA (South Yorkshire Eating Disorders Association – a local charity). And it’s pretty successful in the grand scheme of things. I hadn’t really thought I’d been doing that well (and I put a lot of any successes down to having support workers at home who do help me manage meals) until my OT reminded me of where I was in November when we started working with each other and I can’t deny there has been a lot of progress.
So I got to wondering why? Yes, this OT is great, she’s lovely, brilliant at her job and understands eating disorders so well and isn’t phased by my other mental health and life issues – which has a lot to do with it. But I have had treatment with other great professionals for my eating disorder over the years. So why has this one felt so much more right?
I’ve had a myriad of eating disorder interventions over the years. Inpatient, day service, specialist unit, support in mental health unit, support groups, OT, CBT and CAT and everything in between. But a huge difference with this one is timing. I realised things were starting to go downhill and spent a couple of months failing to turn things around and accepting that I did need help. SYEDA re-opened their referrals for Sheffield, I referred on the Monday, was seen for an assessment on the Friday and started OT sessions barely a fortnight later. Yes I was anxious, but I still wanted help at that point. The difference is that every other time I have received help it has been a long long time after I have needed (and asked for) it.
The first time I was taken to my GP as a teenager by my mum, We were told by the GP “it’s a phase, she’ll snap out of it”… I was just 18, I’m now 33 – not a particularly accurate prognosis. I then also fell down the “gap” between CAMHS and adult services, then I didn’t fit the very strict weight criteria. I had a few things here and there but I didn’t have substantial help with my eating disorder until I was 24. I then spent 4 solid years in one type of treatment or another which gradually got replaced by mental health problems taking precedent. I never fully recover. Just get to a manageable point. But I do believe, had I had help as a teenager I may not have had such a long battle for the rest of my life.
The last time I was in Eating Disorder Specialist services a couple of years ago it took 7 months and 3 failed referrals before I was able to access an assessment. When I was assessed it was at the point that I actually started CBT the week after. I worked really hard and the help I got from the service was outstanding but I never regained where I was before that relapse – which eventually turned into this current one “a second wave”.
The average time between a person seeing their GP for the first time with an eating disorder (which probably already comes a significant time – even years or decades – into someone’s illness) and them seeing a specialist is up to 40 weeks. People die in that time. I’ve known people who have died in that time. The infamous “postcode lottery” to health service access is no more pronounced than it is in the field of Eating Disorders. Young people being sent from the south of England to Scotland because it’s the only bed available is all too common.
Early intervention saves lives. And not just in the literal sense. It can give people their life back instead of spending decades in a miserable world obsessed by food.