Eating disorders awareness week 2024 ( February 26th to March the 3rd)

 This week is eating disorders awareness week, this year the theme is about ARFID (Avoidant Restrictive Food Intake Disorder) but there needs to be more understanding, awareness and support for all eating disorders.

I'm open about my history of eating disorders and to be honest thinking back I think it actually started with a form of ARFID. I can remember having food issues from starting school, I would be sent into the packed lunch room first sitting whatever year group was going in first, I would sit on my own and spend the whole lunch hour eating 2 small sandwiches, a yogert and packet of crisps I would have offered around the table. I didn't like many foods and would often get told off for not eating my dinners at home as I was so fussy. I think I had anxiety in general about everything and was ridiculously quiet and shy, at school I was known for not talking and not eating and maybe it became my identity and bullying made my anxiety worse.

When I was about 11 my mum won slimmer of the year at a slimming club and we went to an awards ceremony, obviously everyone said how well my mum had done and I thought I wasn't good at anything so maybe if I was good at losing weight I could be good at something. Its sad that even then my mum got more praise and attention for losing weight than for graduaing from a HNC in computing at university. I also went on a guide camp the summer before starting secondary school me and another girl would hide food because we didn't like it and being a bit rebellious it would be something we would laugh together about, as I always struggled making friends, and not knowing what to talk about I think it became a focus of that friendship....it didn't last. Around about the same time I remember watching the children's programme children's ward and there was an anorexic storyline and I think I read about it somewhere so I think that combined triggered my eating disorder. I started skipping breakfast and throwing away school lunches and then took packed lunches and would just throw them away. I was 13 when I first made myself sick and took laxatives but the majority of the time I just didn't eat but couldn't get away with totally avoiding evening meals and the only drink I drunk was hot chocolate so I never got to a really low weight, so although teachers at school and my parents were concerned due to my eating and mild self harm Camhs (child and adolescent mental health services) saw me for about 6 sessions, told my parents I was upset about my sister being pregnant ( which I wasn't) and discharged me. I was getting bullied at school, struggled to make friends and always felt I didn't fit in and never felt good enough, yet I got no mental health support for any of it.

When I left school I could get away with not eating more as I was at college and work I could say I had eaten there and if I was confronted about my weight when I was losing it I would be defensive and say it wasn't a problem I was happy if I was losing weight and at that time didn't see it as a problem. I was always cold, my fingers would go blue and I was always dizzy and would fall asleep on the bus to work, I even fell asleep on the line in a factory I worked in packing fish fingers but  no idea how I managed to go to college full time, and work at the riding school on my days off and work in a fish factory in an evening despite often getting by on a bread bun and hot chocolate. When I went away to uni I was such a slow eater others didn't want to wait for me to eat and as I was fussy too I stopped going into the canteen so would just have a tin of soup or spaghetti a day despite doing an active course with horses where on top of lectures we horse rode and looked after the horses on yard duties. I would sleep in between lectures but managed to graduate. After uni I got a job in Lancashire with rescue horses and I told myself I had to eat to be able to look after the horses well, I don't know if I ate relatively normal or binge ate but I obviously put on weight after restricting for years but went from about 8 stone to 12 stone at 5 ft 8 so was a healthy weight especially as I was active horse riding and doing yard work. But the manager at the rescue centre would get us to go on the scales and told me one day I was too heavy to ride a horse he had told me to get on to check he was safe for a work experience girl to get on. I wasn't heavy and the horse wasn't small but it then made me think I had to go back to not eating again so I would avoid eating all day but because I had been allowing myself to eat during my period of more normal eating I would get really hungry so would end up binge eating in an evening so then I had to be sick to deal with the guilt and to control my weight. I lived in a shared house and my housemates guessed I was bulimic so then I moved back home with my parents and hid it from them for months being sick in carrier bags in the garden or in the woods whilst walking the dog (I wouldn't wish it on my worst enemy and you lose all your dignity and self esteem). I hid it from my parents for ages until I was caught one day when my mum came home unexpectedly whilst I was in the middle of bingeing and purging, I would plan it when they were out or asleep, it got where I could only eat if I could be sick afterwards. I went to the gp and asked for help in 2002 when I was 21, but only saw mental health professionals who had no experience in eating disorders so I got no helpful advice or support let alone therapy. As time went on it became the eating disorder became like a constant voice controlling my thoughts telling me I wasn't allowed to eat or could only eat if was sick and your own rational thoughts get drowned out especially at times I'm more anxious and depressed. It became I then had to self harm if I gave into hunger and ate so it became a cycle of restricting, bingeing, purging then self harming but even then I couldn't get any more mental health support. In 2007 I had to have a pacemaker as bulimia made a hereditary heart condition worse and I was told I was at risk of dying without one due to constantly low potassium from being sick but even then only my heart consultant in Leeds was concerned, no mental health support still. During that time I managed to work full time and look after and ride my horse despite being unwell.

I had found an eating disorder support group in Hull so would go there with my mum and finally in 2009, 7 years after first asking for help for my eating disorder, my dad complained to someone in mental health services that no one locally was helping me, even a new eating disorder service that had been set up wouldn't help me, there were times I was classed as too high functioning because I worked, and times I was classed as too complex as I self harmed. But it had got that I would self harm, bandage my arms up, wear long sleeves and go to work as a support worker and was good at hiding my struggles then but did constantly try ask for help. Eventually I was referred to an eating disorder clinic in Leeds as an outpatient but was classed as too severe so went inpatient but for bulimia you were only offered 8 weeks  "symptom interruption" so I was told to get psychology back home as I wasn't there long enough, for anorexia, patients were offered longer based on wether they were doing full or part recovery based on weight, part recovery was to get to a weight that was healthier, full recovery was to get to set point weight the weight your body stabilises at when consistently eating 3 meals and 3 snacks. So for longer admissions there was individual therapy and groups for shopping, eating out, cooking, body image etc. but in the time I was there there were no groups or therapy just got bed and food and made to sit in communal areas for half an hour after each meal to prevent being able to be sick but I would still be sick after the half hour but I got no support to help and went home as bad as I went in. My home care co ordinator had been off sick for my whole admission so I came home to no mental health support or physical health monitoring. I found a strength myself from somewhere and tried to focus on wanting to train as a nurse, I've said since I was 12 I wanted to be a nurse, I had even continued doing agency care shifts whilst on home leave from the eating disorder clinic so I told myself I couldn't self harm and couldn't be sick, I still restricted and binge ate but started the access to nursing course and got a conditional place at Hull University to train as a mental health nurse but relapsed badly with self harm and my eating disorder. I ended up in a and e but crisis team told me to see my care co ordinator who I hadn't seen for about a year or 2 by then and it took weeks to get a replacement one after my relapse. I got a new care co and was finally referred for eating disorder cbt therapy, 10 years after first going to my gp asking for help for bulimia, during my years I had times I had more anorexic behaviours and restricted more and times I binged and purged more but therapy focuses on what's going on at the time so I had cbt for bulimia. I saw a good therapist for 20 sessions of cbt but despite some improvements, it was to treat a 10 year problem, alot longer if consider it had started years before I asked for help too and then the therapist left. I lost my confidence in myself and didn't believe I was good enough to be a nurse because of my ongoing fear of failure and I felt hopeless my eating disorder would get better and I got into a cycle where the eating disorder voice would tell me I was fat and useless and deserved to die so I would take overdoses as the thoughts became stronger than my own. Between 2012 and 2014 I took about 60 overdoses but was just told dbt therapy would help me and I had to wait about a year to start it. By then it got I couldn't go out without overdosing and local services classed me as too complex after I was thrown off dbt for self harming. So I had a care co ordinator and a support worker from a team for complex cases but they couldn't help my eating disorder but I stayed safer from overdoses for a few months until that team lost funding and I lost that support. My mum then researched and we found a personality disorder therapeutic community in London which had now become my diagnosis and despite my self harm and suicide attempts stemming from my eating disorder it was ignored but the hospital in London said they dealt with disordered eating that was part of a personality disorder and there would be individual therapy there. But by the time I went there which was a hospital where you were informal and not sectioned I wasn't safe to go out on my own and took more overdoses. As my parents then said they couldn't cope with me at home anymore, I was admitted onto the local mental health acute ward where despite not eating for days at a time my eating disorder was ignored and then my self harm escalated, cutting got replaced by banging my head on walls and overdoses were replaced with tying ligatures as my self destructive thoughts worsened and I got no therapy, I was just sectioned and restrained and had to wear anti ligature clothing and bedding in a bare room. I got sent out of area to a locked unit for ladies with personality disorders where again I was told they didn't understand or treat eating disorders and the psychologist left so I spent 10 months there with no therapy. I became really poorly with meningococcal septicaemia and pneumonia and nearly died and I got scared of dying so got safer from a suicidal perspective and was discharged to a mental health rehab where I had my own flat and staff support but still no eating disorder therapy. I've had therapy for personality disorders and got to a point of being safer with self harm and my own strength has meant I've had times my eating disorder has been more manageable especially since I joined a choir in 2018 but I was still struggling with my eating disorder so in 2022 I had 10 sessions of eating disorders therapy but I was just told eat 3 meals and 3 snacks but not how to manage the eating disorder intrusive thoughts or the underlying issues that cause and maintain the eating disorder or a dietitian helping to do a meal plan of what to have and how much which you get in an eating disorder clinic. So I decided to try a calorie counting diet similar to friends had been successfully doing and I even would say its unhealthy to go too low with the calories and for 11 weeks I lost about 3 stone by having 1200 to 1400 calories a day but then my mental health got worse with anxiety and depression and I relapsed with eating disorder thinking. By January 2023 I was feeling guilty even having 200 calorie diet meals or even a yogert as the eating disorder voice made me feel guilty about all calories and I took an overdose after feeling guilty about a yogert. I think the depression was triggered by a change in some meds I'm on for my heart condition and the anxiety was triggered because I put more pressure on myself by going back to work after not working for 7 years and taking on 3 volunteering jobs and I also was getting alot less mental health support as I had been going to a personality disorders therapeutic community 2 years 3 days a week where although I struggled to talk in a group so hadn't dealt with alot of my personal underlying issues for my mental health problems as there was no individual therapy I did find it helpful being able to talk through current anxieties and relationship / life issues I was having due to my social anxiety. I also lost support workers at my flat after it had been one of my goals to be more independent but I've struggled since to keep on top of everything because of my anxiety and depression and eating disorder especially this year during my relapse. I've managed to do most choir gigs and do 12 hours paid work a week but had to stop my volunteering and there have even been weeks I had to miss choir or seeing my horse when my eating disorder won't let me eat enough to be safe to drive. Last year my eating disorder was closer to atypical anorexia where you have all the symptoms of anorexia except due to starting at a higher weight despite losing alot of weight in a short space of time your still a high weight but still have the same medical risks as anorexia. Lately it has been more bulimia with more bingeing and purging after restricting, sadly our body and brain are clever and try to protect us from starving ourselves so make us eat to compensate but mentally the eating disorder brain then makes me feel guilty for eating so then I have to be sick and then feel guilty to eat again so a constant cycle. The only therapy I was offered was for personality disorders and self harm and even that was 7 months after relapsing with overdoses and I took 3 big overdoses last year as well as smaller ones to shut my eating disorder thoughts up. In the individual therapy I was told eat regularly and put a stop sign on my bathroom door to try prevent me being sick and write a list of pros and cons to the eating disorder but living on my own with no support to eat, shop or cook meant I couldn't follow it as the eating disorder thoughts get too strong so I try  different ways to manage myself including having fortisip nutrition drinks on days my eating disorder won't let me eat so I can be safe to work and go to choir but other days I often end up staying in bed avoiding food  then feeling too physically and mentally unwell to do anything.

I've shared my story including my relapse to highlight that eating disorders can be happening in anyone of any size and there are so many overlaps between different eating disorders, someone can fluctuate between, anorexia, bulimia and binge eating disorder at different times and mental health and dietitian support is needed for long term recovery for them all, sadly as mental health services are overstretched, support is even harder to get and although eating disorders can be dangerous and even fatal at all sizes, mostly only severe anorexia gets treated inpatient or even long enough outpatient and I've even known of people with anorexia being classed as too complex and left to die. I was actually the healthiest on the picture in the blue ball dress at 15 stone, I was swimming 22 miles in 12 weeks and eating to fuel the swim at a  "healthy" bmi I was in an eating disorder clinic with severe bulimia affecting my heart yet society and even medical professionals go by appearance and weight according to bmi as signs of health and social acceptance which is also why eating disorders often go undetected and are even classed as normal and praised.

If you or someone you know thinks they have an eating disorder, contact beat the eating disorder charity and see a gp for advice and medical monitoring and hopefully a referral to an eating disorder service for therapy. Recovery is more successful with early intervention and recovery isn't always cure but being able to manage it better to be able to live a healthy, happy, productive life despite it.