How I got my Ehlers-Danlos Syndrome diagnosis - EDS Awareness Month

May is EDS Awareness Month and so, because I have EDS, I wanted to write a post to help people understand a bit more about Ehlers-Danlos Syndrome. I’ve already written about my Invisible Illness Story, what it’s like Living with Digestive Problems and about Week One, Week Two and Week Three on the Stanmore Rehabilitation Programme. So I was trying to think of something different I could talk about this month. I asked around a few friends, some Facebook groups and also on Instagram, and one topic I was asked about a few times was ‘How did you get your EDS diagnosis?’ The short answer to that question is “With great difficulty!” And so, because of the length of time and immense struggle it was for me to get the correct diagnosis and the fact I know a lot of people go through the same problems, I felt it might be a helpful story to tell you. 

I should probably start by saying there are lot of different routes to being diagnosed with Ehlers-Danlos Syndrome Hypermobility Type and so this post will only document my particular route and symptoms. I also need to include that I’m by no means a medical expert – I’m simply a person who has the condition and therefore has a lifetime of experience on looking for answers! My journey to diagnosis spans 25 years, but I truly believe it shouldn’t need to take this long and so by educating medical staff and people with symptoms, the journey to diagnosis should be much easier.

My story starts on the day I was born, although we didn’t realise it at the time. When the doctors came to do my newborn checks, they realised I had Developmental Dysplasia of the hips (DDH), which basically meant the ball and sockets of my hip joints hadn’t formed properly. This caused my hips to dislocate when I moved, and was treated with a fabric splint known as a Pavlik harness. I wore this continuously for a number of months and according to x-rays, my hips finally developed to a normal position. However, despite them appearing normal on x-rays, I have always had issues with my hips dislocating and subluxing (partially dislocating). It was just put down to being ‘one of those things.’ 

This saying soon became quite a big part of my life. As a very young child I started having problems with urinary retention, but my parents were told that girls couldn’t go into retention (completely incorrect) and again, that it was just ‘one of those things.’ I would often end up in A&E with painful joints and muscles, but these were always diagnosed as sprains and strains and I was just labelled as being clumsy (and probably a bit of a hypochondriac). Throughout my childhood I had all sorts of apparently random symptoms and problems, which, of course, were always ‘just one of those things.’ And so, because my doctors didn’t show any concern, neither did we. That was until I hit the age of 15.

At this point, my symptoms started getting a lot worse. I was exhausted and in pain all the time, was having all sorts of strange problems with my digestive system, my heart was always racing, I felt really faint and it felt like every day something else was going wrong with my body. My GP was my first port of call, and they ran some basic blood tests and sent me for an ultrasound of my abdomen. These all came back clear and as my symptoms continued, my GP referred me to a paediatrician and gastroenterologist. They ran a few further tests (more bloods, a barium swallow and I think a brain MRI). But the tests were all coming back normal, despite my worsening symptoms. As time went on, we still had no answers and the gastroenterologist stopped seeing me because they thought I ‘just’ had IBS (Irritable Bowel Syndrome). In the end, my Dad started doing some research into my symptoms, and came across the condition M.E. He asked my paediatrician if she thought I might have it, and her exact words were, “Well if you believe in that then we’ll call it that if you like.” Not helpful in the slightest and she was completely misinformed about M.E. Still, that’s the diagnosis I ended up with.

The M.E. diagnosis pretty much put a stop to any further investigation of my symptoms, and I was referred to the children’s mental health team (again, even if my symptoms were all caused by M.E. a physical health doctor really should have looked after me!) The next few years were difficult – with very little support for my physical health and with worsening mental health because of this, I ended up in a psychiatric hospital. No one was interested in my physical symptoms – I was either told they were psychological or all down to having M.E. This made it incredibly difficult to get anyone to listen to me. Then in 2012 I became very unwell. My digestive symptoms suddenly got a lot worse – I was losing a lot of weight and went downhill very quickly. I had various tests including a stool sample, gastroscopy and colonoscopy, as well as various scans, but no answers were found as to what was causing my problems. I ended up being admitted to hospital for tube feeding and further tests, but when no answers were found it was all blamed on psychological problems. This led to a mental health crisis and I was sectioned.

It was only after I spent a couple of years getting my mental health back on track that I finally found a GP that took my physical health problems seriously. Without her input, I’m honestly not sure where I would be today. I had been doing some research and talking to some friends, and at the same time, my GP had a friend with EDS who she had been talking to. The key moment was when I went into hospital due to problems with my gall bladder and the nurse happened to leave my notes on my bed with me. So of course, me being the nosey person I am, I decided to have a flick through! I came across a report from when I was very little – probably under two, in which a doctor had written that he believed I could have a connective tissue disease. I immediately contacted my parents and asked them about it – they had never been told anything about this. So we took the information to my GP, along with some of the research I had been doing, and that was the start of me finally getting some answers.

Rheumatology referral

The first thing my GP did was to refer me to a Rheumatologist at my local hospital. Before my appointment, I did quite a lot of research on EDS UK. I know there is often some question of whether you should research symptoms online and take them to your doctor, but I firmly believe this helped me to have a productive appointment with both my GP and my rheumatologist. There will always be a balance, but I don’t see being informed about your symptoms and (possible) diagnosis as a bad thing. I made a (rather long!) list of all my symptoms and my medical history, and even before I saw my consultant I suddenly felt like everything was starting to make sense.

I saw a fairly young rheumatologist and, for the first time, she seemed to really listen to everything I was saying. She asked a lot of questions about what I was like when I was younger (for example, my hip problems, the fact I’ve always been very flexible, my bladder and bowel issues and the fact I was always injuring myself were important for her to know) and then she examined me in quite a lot of detail. One of the diagnostic criteria is something called a Beighton Score, which assessed your level of hypermobility across the whole body. I believe my score was 9 out of 9, so I couldn’t be more hypermobile if I tried!

However, just because you score highly on the Beighton Score doesn’t automatically mean you have Ehlers-Danlos Syndrome. People can be hypermobile without it being diagnosed as EDS. The diagnosis comes from a whole range of observations and history including a high Beighton Score and then two or more other features from a pretty long list. This list includes things like having soft or velvety skin, a certain type of scarring, prolapses, arm span being longer than your height, positive family history and a whole host of other symptoms. My Rheumatologist ordered a few more blood tests, but gave me the diagnosis of Joint Hypermobility Syndrome. At the point of me being with diagnosed with this, it was still a valid diagnosis. However, I thought I should point out that the diagnostic criteria have now been updated and the names have been changed.

Gastroenterology and Cardiology referral

A diagnosis from a local Rheumatologist can be the end of some people’s journey if their symptoms aren’t too severe or affecting their life too much. However, a lot of people with EDS will have multi-systemic and co-morbid conditions that require further diagnoses and treatment. As my digestive and cardiac symptoms were the most difficult for me at that point, I was referred to local consultants for both of those problems. All of a sudden, having a new diagnosis seemed to get other doctors actually listening to me and taking me seriously. Both doctors ran a few tests, but it soon became evident that I needed more specialist input, and so I was referred to a couple of London specialists. 

London specialists

I don’t want to go into too much detail about every single specialist I was referred to, because we’ll be here all day! But my most important referral (as far as I’m concerned anyway) was to Professor Aziz, a neurogastroenterologist that specialises in digestive problems in people with Ehlers-Danlos Syndrome. I was so nervous about seeing him because up until then, no one had really taken my digestive problems seriously. But he was one of the best doctors I have ever seen. He and his team went through the examinations again, and changed my diagnosis from Joint Hypermobility Syndrome to Ehlers-Danlos Syndrome Hypermobility Type. They also ran some more specialist digestive system tests and after years of no answers, I was finally told that, most likely due to my EDS, I had Gastroparesis and Intestinal Dysmotility. If you’re interested to hear more about the other diagnoses I have received alongside my EDS, please do let me know and I’d be happy to talk about those more.

Royal National Orthopaedic Hospital Stanmore

I thought before I finish this post, I should include a small mention of my time at Stanmore. I was referred here by one of my local consultants, as they specialise in EDS and particularly in managing pain. The referral process was long and difficult due to it being so popular, but I was eventually seen by one of their Rheumatology consultants who spent over an hour with me. We went back over my whole medical history and she redid the Beighton Score, as well as a whole host of other examinations. They were able to confirm my EDS diagnosis and referred me to the three-week pain management programme, which I wrote about last year. They are also able to refer people for things like genetic testing if they believe you may have a different type of EDS. 

I’m really sorry this has been so long! I really hope it might be helpful to anyone that’s starting the diagnostic process, but also hope it will be interesting to those of you that don’t know much about EDS. If you have any questions at all, or would like to see me write about something in the future, please do let me know, as I’m always interested to hear your requests! And if you’d like to share this with anyone I would really appreciate it, as the more awareness we can raise this month (and beyond) the better.

Do you have a diagnosis of EDS or are you trying to get one? Have you found my story helpful? 

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Why I no longer focus on being recovered from my eating disorder

If you read my last post, you will know that Eating Disorders Awareness Week runs from Monday 26^th February to Sunday 4^th March 2018, so this week I wanted to share a couple of posts about my experiences of having an eating disorder. In the first post I uploaded this week, I talked you through my Eating Disorder story so you might find it interesting to read that first and get a bit of background before you continue with this one. But today, I wanted to chat to you about why I no longer focus on being recovered or ‘fixed’ from my Eating Disorder. Like with my other post, 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 experiences and opinions – it shouldn’t replace medical advice from your own doctor and I understand that what works for me won’t work for everyone.

I’ve been battling eating disorders in one form or another for a large proportion of my life. Although it didn’t become obvious until I was around the age of 15, I was getting negative thoughts around food, my weight and my body from a much younger age. As you will have seen in my other post, I have also been through a lot of different treatments over the years – inpatient, day patient, out patient; input from dieticians, psychologists, psychiatrists, occupational therapists, nurses and doctors. Some of these have been helpful, while others have often made things worse. But all of these treatments have taught me something and, whether good or bad, they have contributed to my overall journey and got me to where I am today.

For pretty much the entire time I was in treatment, my biggest focus was on reaching the point of being recovered or ‘fixed’ from my eating disorder. I think a lot of this was down to being in treatment – recovery was always spoken about and was always pushed as something we should be aiming for. Quite often, it was made out to be this amazing place where an eating disorder just didn’t exist any more. You were completely happy, could go out for meals without anxiety and loved the way you looked every time you saw yourself in the mirror. But despite being in treatment over the space of around ten years, I never managed to reach this Nirvana.

I would spend most of my time beating myself up mentally, asking myself “Why can’t I recover?” or “Everyone else is recovering, why can’t I?” It got to the point where my feelings of failure towards recovery were becoming triggers for my eating disorder thoughts and behaviours. If I can’t recover, then what’s the point of even trying to put on weight/stop using negative behaviours/learning to accept myself? I already felt awful about myself, so feeling like a complete failure was just another negative emotion to add to my overflowing bucket of negativity. It was just another thing that I was rubbish at – another thing I couldn’t do.

But it’s only now, after so many years of beating myself up, that I’ve come to the realization that the state of recovery I was trying to achieve is unlikely to actually exist. I was trying to get to an impossible place. Now before I go any further, I want to acknowledge that there are people that say they have managed to get to a place where they feel their eating disorder is completely gone – they can enjoy food without worrying about weight gain or calories, never think of using eating disorder behaviours and feel completely happy with their body. And that’s absolutely brilliant that there are people who manage this. But I feel like they are probably in the minority, and unfortunately aren’t people I am able to identify with. For me, I think obsessing over trying to get to a point where I am completely recovered from my eating disorder is unrealistic and therefore unhealthy. All it leads to is a negative cycle of feelings of failure, using eating disorder behaviours to deal with those feelings and therefore continuing to feel like a failure. And as far as I’m concerned, that’s no way to continue to live your life.

Once I realised that being completely recovered isn’t possible for everyone, I started to think more about what recovery could mean for me. I realised I preferred the word recovery to recovered, simply because it allowed me to see it as a process and a journey, rather than an end point that I would reach and then everything would be fine. When I stopped trying to reach that end point, and just took things a day at a time, life started to get a little easier. I stopped seeing myself as a failure every time I slipped up, and so stopped beating myself up too. I no longer compared my journey to other people’s, which allowed me to focus on my own journey and what is right for me. Little by little, I have made progress, and I’m able to look at that progress with compassion for myself, rather than feeling bad for not doing better.

Now I’m not saying that there aren’t certain aspects of an eating disorder that you shouldn’t worry about recovering from. For example, it is really important to get yourself to a healthy weight, or to stop using harmful behaviours such as bingeing and purging. These things impact on your wider health, as well as your mind, which is often why, in eating disorder treatment, these are the first things you have to work on. I never understood this when I was really unwell – how was I meant to put on weight when no one was helping me with my thoughts? But now I understand that you simply cannot be moving towards recovery when you’re dangerously underweight or are using negative coping mechanisms. So whilst I don’t focus on being recovered any more, I do understand that I need to be in a healthy body to allow my mind to begin a process of recovery.

But that’s what my life is now – a process of recovery – and I don’t think there will ever be an end point. I still struggle with thoughts about my body and my weight, I still get times when I have to eat and really don’t want to and I still get anxious every time I put weight on/a buzz if I lose some weight. But I’ve accepted that it’s OK for me to still have these anxieties – it doesn’t make me a failure or a bad person – it just makes me a person that is battling an eating disorder (and winning). I’m winning because I keep trying. I’m winning because, overall, I feel like I’m in control more than my eating disorder is. Yes, I might sit in front of a plate of food and have thoughts about not wanting to eat it. But I am able to challenge those thoughts and convince myself that those are my eating disorder speaking. And I sit there and eat that food, no matter how anxious I feel. Yes I still weigh myself once a week, and when I see my weight go up, I automatically start thinking about what I can do to bring it back down again. But that’s where it stops – at thoughts. Because most of the time, I fight against those thoughts and give myself a positive pep talk about why listening to those thoughts is a really bad idea.

No, this isn’t what I imagined being recovered would be like, but that’s OK because every single day for the rest of my life, as long as I am on my recovery journey, I am OK with that. It doesn’t matter what everyone else is doing. You just need to do you, and as long as you are fighting that eating disorder in whatever way you need to, then you are doing a damn good job.

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 and start your journey of recovery. 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. I know how scary starting that process is (and hell, even continuing with that process however long you’ve been on it), so if talking to someone you know feels too hard, 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.

What are your thoughts on being recovered from an Eating Disorder (or any kind of mental illness)?

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My Eating Disorder Story - Why Wait?

Eating Disorder Awareness Week runs from Monday 26^th February to Sunday 4^th 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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