Monday, 26 February 2018

My Eating Disorder Story - Why Wait?

Eating Disorder Awareness Week runs from Monday 26th February to Sunday 4th March 2018, and this year Beat, the UK’s largest eating disorder charity, are asking the question ‘Why wait?’ On average, 149 weeks pass before someone experiencing eating disorder symptoms seeks help. That’s almost three years, 37 months or 1043 days. In other words – it’s far too long. There is evidence that shows that the sooner someone gets the treatment they need, the more likely they are to make a full and fast recovery. I know from personal experience the negative consequences of not receiving the correct treatment soon enough, so this week I want to share a couple of posts about my experiences of having an eating disorder. I had a look back through my blog posts and noticed that I talked about my eating disorder story back in 2014 – I can’t believe that was four years ago now! So I decided I would start this week by writing up a new, up-to-date account of my journey with an eating disorder. I want to add a quick disclaimer that this could be triggering, so only continue to read if you feel strong enough. And of course, this is just my story and opinions – it shouldn’t replace medical advice from your own doctor.

Looking back knowing what I know now, my eating disorder story starts when I was fairly young. When I first started school at the age of 5, I had never given any thought to my weight and as far as I was concerned, food was just something to enjoy and to fill me up when I was hungry. Throughout Infant School I was fine, but then I went up to Junior School when I was 7, and things started to change. Boys in my year started making little comments about me and in my second year at the school, one boy in particular started making comments about my weight. I still remember vividly, walking up the stairs to our classroom after P.E. with him behind me, and he decided to kick me and call me fat. It was the first time anyone had ever called me that and, although I was starting to become more aware of my body and the differences between my friends and I, at that point I had always felt OK about the way I looked. But that one comment changed that, and after that incident, I started to become much more self-conscious and self-critical. I didn’t want to wear clothes that showed off my body any more and started to get fixated on healthy eating, reading books and magazines about eating healthily and losing weight. Despite this, I think I managed to hide my feelings fairly well and just sort of put up with the comments and my anxieties around my weight and food.

When I moved up to Senior School though, my anxiety and fixation on my weight started to get worse. I think this was partly due to going through puberty and feeling uncomfortable with my body changing, but also because I started getting bullied by some older boys, who again, decided to make comments about my weight, trip me up, push me over and push me down the stairs. I just want to say now, before we go any further, that I really wasn’t a fat child. Yes, I wasn’t super skinny like some girls in my year, but I was far from overweight. But at the time, all I could believe was the nasty comments being directed at me. Again, despite all this bullying, thanks to a good group of friends I was able to somehow manage my body and food anxieties. Without those friends I think things would have been very different.

Things started to go downhill around the age of 15, when my physical health started getting worse. I won’t go into too much detail about that side of things now because otherwise this post will end up being a book! But in short, I had had health problems since birth (which we now know are due to my Ehlers-Danlos Syndrome) but it wasn’t until I was 15 that I became really physically unwell. One of the ways my EDS affects me is by giving me awful digestive symptoms, and when I was 15 these started to become pretty severe, alongside other symptoms of pain, fatigue, nausea and sickness. I was finding it physically impossible to get enough nutrition into me, and the food I was consuming didn’t seem to be absorbed properly, leading to me losing weight. At this point, we didn’t know what was wrong with me, and while I was waiting for a referral to a paediatrician, my GP asked my Mum to weigh me regularly and keep a record of what my weight was doing. I had never weighed myself before this, but within a few weeks of regular weigh-ins, I had started to become fixated on the numbers, and got a kind of strange buzz from seeing them going down. Alongside this, I started getting comments from people about my weight loss, and they made me feel good. I wasn’t losing weight on purpose, but the numbers and the comments had started to affect my thinking and I was becoming scared of putting on weight, and therefore of eating.

As time went on, I went through hundreds of tests to try and work out what was going on with my physical health, but they just kept coming back normal. In the end, my doctor said they were diagnosing me with M.E. but that they weren’t actually sure it was the right diagnosis – they just didn’t know what else to call it. But more and more, I felt like I wasn’t being believed that there was something physically wrong, and doctors were hinting that they thought I was making it up. I felt completely out of control of my body and what was happening to me, and felt more and more depressed. The only thing I had control over was my weight, so I got drawn in further to limiting my food and losing weight. There was still a physical element to this, because whenever I ate it caused me horrible symptoms, which I now know are because I have Gastroparesis as a result of my EDS. But at the time, no one believed me that there was a physical problem, so I was referred to a child psychiatrist and my physical health was pretty much ignored. As my mental health became worse, less and less attention was paid to my physical health. I was self-harming and making regular suicide attempts, as well as barely eating.

Eventually, when I was 17, I was admitted to an Adolescent Psychiatric Unit in Winchester for my depression. The unit actually specialised in eating disorders, but despite my parents continually telling the staff that I had an eating disorder and needed help, they refused to acknowledge it because my BMI wasn’t below a certain number. I found it so hard having to watch the other patients on the eating disorder programme getting a high level of help and support throughout the day with their eating and managing their feelings, while I was left alone. Without any meal support (my parents were really hands on with it when I was living at home) my weight began to drop further and I became more and more unwell. But it took about five months for the unit to finally recognise that I did, in fact, have an eating disorder and I was diagnosed with an Eating Disorder Not Otherwise Specified (EDNOS) and moved on to the specialist programme. However, because my weight still wasn’t low enough, I wasn’t able to start on Stage One, and so instead, went in towards the end of the programme, meaning I missed a lot of the group sessions and support that the other patients had had.

I’d been waiting nearly three years for someone to realise I was struggling with food and my weight, and to be honest, by the time they did, I think it was too late. This is why Beat’s ‘Why Wait’ campaign is so important. Being on the programme certainly helped a bit – I put on a bit of weight and started to learn some healthy coping mechanisms, but before long I was discharged back home. I went from having 24/7 support to seeing an eating disorder nurse once a week – it was a big change. Despite that, I did manage to maintain my weight and started at college. In between turning 18 and 19, I was transferred to adult services and lost the little eating disorder support I had been getting. Somehow though, for a few years I managed to keep myself stable. There were times when I really struggled and I started to lose weight or engage in eating disorder behaviours again, but I was able to pick myself back up again and focus on other things in my life.

Things were going OK until 2012 when my physical health went downhill again. It all started with what I thought was a stomach bug – everything I ate just either went straight through me, or made me sick, and after this continuing for a month, I went to see my doctor. I was referred back to my Gastroenterologist, who carried out a variety of tests including a colonoscopy and OGD (Gastroscopy). But again, these were all coming back normal and I was getting more and more poorly. I continued to lose weight, unintentionally for the first few months of the year, but this weight loss, like last time, started to feed into my eating disorder again. In the summer of 2012, my Dad took me for an appointment with my Gastroenterologist – she took one look at me, realised how physically unwell I was, and admitted me to the ward for tube feeding. At this point, this was still for physical health problems – the idea was that I would be put on an elemental feed, which would give my digestive system a break from having to break food down and hopefully help me to start absorbing my food again. Whilst I was in hospital being tube fed, a few more tests were carried out, but these, again, all came back normal. After over a month of tube feeding, my doctors told me they couldn’t find anything physical wrong with me, so were going to remove the feeding tube and send me home.

I told them a few weeks before that all these physical problems had triggered off my eating disorder and that I really needed help – I’d been tube fed for what felt like a long time and I said that, if the tube was just removed, I honestly didn’t now how to start eating again. But despite this, they took the tube out and I was given an appointment with the eating disorder service for a couple of month’s time. I was absolutely terrified of eating – both because of the awful symptoms it caused me, but also because I didn’t want to put weight on. I also felt completely defeated by my physical health and let down by the health profession. I just didn’t want to carry on living any more. And when the tube was removed, I just gave up and didn’t eat. I thought if I stopped eating then they would just let me die. This carried on for about a week, by which point I was starting to slip into a coma, so they put me on a drip (against my will) to keep my sugar levels stable. My eating disorder appointment was brought forward and somehow I managed to get over to the hospital for an assessment with the team.

It was a difficult meeting because I felt like I couldn’t make myself understood about why I wasn’t eating. The doctor told me that, if I could eat something within the next 48 hours, then they would take me on as a day patient. But 48 hours went by and I just couldn’t do it. It was like there was some kind of wall up in front of me. I went back for another appointment with the psychiatrist, who told my Dad and I that I was too unwell to be given help as a day patient. I vividly remember my Dad saying something along the lines of “OK, so does that mean she will go into an inpatient eating disorder unit then?” And the response of the doctor was, “No, because she isn’t unwell enough (i.e. underweight enough) to meet the criteria for inpatient care!” So I was too unwell for day patient treatment, but not unwell enough for inpatient care. And there is nothing in between!

I was sent back to the general hospital and, a little while later, a group of three different staff from social services, as well as another psychiatrist, came to speak to me. I don’t remember a lot about it, apart from feeling really confused by all their questions, but I was soon told that I was being sectioned under the Mental Health Act. I just remember breaking down in tears, telling them not to take me until my Mum arrived. It was by far one of the scariest experiences of my life, and at some point, if you’d be interested, I will write about my experiences of being sectioned. I was taken by ambulance to a general psychiatric ward (which was incredibly run down) where they had no experience of eating disorders. But it was a massive wake-up call for me, and the next day, while a member of staff sat with me, I ate my first bit of pureed food. I just couldn’t put my parents through the worry any more, and as much as I wanted to die, I could see how much it was affecting them. So I did it for them.

For the next month or so, I continued to eat very small amounts, but enough to keep me going, and I got my head into a slightly better place. When my section was lifted and I was finally allowed to go home, I was accepted as a day patient by the eating disorder team and began treatment on their programme. Again, I don’t want to go into loads of detail about what that treatment was like, but if it’s something you would be interested to hear about let me know and I can do a separate post. But I spent a good few months going to the hospital daily to eat my meals and receive individual and group support. It was really hard putting weight on and relinquishing that control, and my physical health was still causing me problems. But I knew that no one was going to listen to my physical health concerns when I was so mentally unwell, so I used that as a motivation to ‘get better.’ Once I had reached a healthy weight, I was discharged as a day patient and became an outpatient, seeing a psychologist once a week to be weighed and for therapy. These sessions were gradually spaced out more and more, and soon, I was discharged completely from the eating disorder service. I didn’t feel ready and challenged their decision, but unfortunately, due to a number of reasons (mainly the fact that there simply aren’t the resources to continue with long-term support) the decision stood.

I guess that pretty much takes us up to where I am today. It’s been a few years since I stopped receiving any help for my eating disorder, and things haven’t been easy. I’ve had good times and bad times – my weight has gone up and down (not helped by my digestive problems) and my mental health has been just as wobbly. But overall, I am managing. I haven’t had to be referred back for more treatment, I haven’t had to go into hospital for my mental health and I have just about avoided being sectioned again. I don’t think I will ever be completely rid of my eating disorder – I’m always going to have to be aware that I am susceptible to triggers and keep a close eye on my weight, my behaviours and what my mind is doing. But as long as I’m keeping fairly stable, then I think that’s OK.

As I mentioned, Beat’s campaign for this EDAW is ‘Why Wait?’ and I think it’s such an important question to be asking, both to people who have eating disorders, but also to the government. I spent a long time denying I had a problem and being terrified to seek help, but I really wish I had done it sooner. But at the same time, whenever I have tried to access support and treatment, it has either been denied or there has been a huge wait, leading me to become more and more mentally and physically unwell. By the time I’ve received help on the few times I have asked for it, I have been incredibly poorly and my eating disorder had become so engrained that it’s been an even harder journey towards recovery. So if you’re reading this now and think you might have a problem with your eating, thoughts and behaviours, my biggest piece of advice would be to talk to someone. Whether that’s your parents, a friend or your GP – just starting that conversation is a massive step on the journey towards you getting help and living a life where your eating disorder doesn’t control your every move. If talking to someone you know feels too scary at the moment, Beat have an amazing helpline and will listen to you in confidence, giving you the support and care you deserve. You can find them on:

Helpline – 0808 801 0677
Youthline – 0808 801 0711

As well as some posts on my blog, I have also got a video going up over on my YouTube channel, which I would love you to check out. And if you would like to share this post to raise awareness during Eating Disorders Awareness Week, it would mean the world to me.

Do you have any experience of an eating disorder? I would be really interested to hear your thoughts on my post, your experiences or how you will be raising awareness in the comments

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