Documenting my journey by EmpowerED Expert by Experience Lucy

I was 16 when I started developing disordered eating habits. I don’t remember an exact point in my life, but eating disorders have many triggers and perpetuating factors, which means often the signs are very subtle at first and can easily be dismissed, which was the case for me, I used to be a competitive swimmer and around the time of my GCSE’s, when I stopped swimming at a high level, I started becoming very aware of calories, nutrition labels and developed strict rules around food. At the same time, I started exercising with the intention of burning calories and very quickly things got out of control.

My intentions initially weren’t about losing weight, it was simply about keeping fit and ‘watching what I ate’ but my diet quickly became very restricted, and I significantly reduced my carbohydrate and sugar intake. During the summer of 2017, I decided to go vegetarian because I saw it as a lower calorie option, but I convinced those around me that I never really liked meat. I also stopped eating dairy because I saw it as an easy way to reduce my calories and I told my family that I was intolerant to it. By the time I was studying A levels, I was going through a whole school day without eating as I knew I would have to eat dinner at home. I was starting to hide food, and I was becoming quite unwell.  I remember coming home from school and getting straight into bed because I was always freezing cold, I had headaches and dizzy spells every day and I struggled academically because I was always exhausted. I stopped socialising with friends and always made excuses to avoid social situations because of the involvement of food and the interruption to my routine.

Around this time, I remember seeing a GP with my mum because my periods had not started. I was fully aware that this was due to my eating disorder and excessive exercise but at this point, I saw it as a positive reinforcement each month. My eating disorder had such a tight grip of me that I couldn’t think rationally. I convinced my mum that the reason for my lack of periods was exam stress, and I obviously convinced the GP too because she never screened for an eating disorder or even mentioned it. I’m not saying that she should have known but I do think my presentation warranted a quick screen for an eating disorder with a few questions. I probably would not have been completely honest but by her breaching the topic, it would have then been on my mum’s radar, and it may even have been the nudge I needed to admit I was struggling. I also remember at this appointment that my heart rate and blood pressure were very low, but this was attributed to me being young and athletic.

I will never know how I got through my A levels in the physical and mental state that I was in, but I did, and I started studying medicine in September 2019. I moved over 4 hours away from home and found the transition extremely difficult. Previously I always had dinner at home with my family but now it was all down to me. I was completely in control of what I ate. My brain was constantly thinking about calories and I struggled to concentrate on anything else. During this year, COVID happened and the attention on exercising, fitness tracking and food made everything harder.

Despite how much I was struggling, how unwell I was and how I had changed as a person, no one was aware that I had an eating disorder. I think I must have been very good at hiding it because looking back now all the signs were there. During my early twenties my relationship with my parents and sister became very strained, I was very close to my sister when we were growing up and we spent so much time together but over the years anorexia had stripped me of my personality, and I was not nice to be around anymore. Of course this wasn’t my fault, but no one knew what was going on inside my head. My illness had a huge effect on my family and that’s been one of the most difficult aspects of it for me.

Fast forward to September 2023, I finally told my mum that I needed help. The summer preceding had been so difficult and at this point I think my parents knew there was something wrong, but they thought I was depressed and didn’t enjoy my degree. I remember that morning so clearly and it took so much courage for me to talk to my mum about my eating disorder. At the time, I hated speaking about it and got upset all the time, I had to type out paragraphs on my phone and send them to my mum, boyfriend and close friends because I just couldn’t bring myself to talk. I spent as much of the day as I could in bed, I was so unhappy and cried all the time and I didn’t want to do anything. I had conversations about dropping out of medical school and if it wasn’t for my mum and dad encouraging me to continue with it and waking me up at 5:30 am to get on the bus for placement, I think I would have.

I saw my GP and unfortunately the care, I received was very inadequate. She was reluctant to make a specialist referral because she didn’t think ‘my BMI was low enough’ and she failed to follow guidelines for someone presenting with an eating disorder. Instead, she tried to attribute everything to depression and prescribed me antidepressants. At this point, I was very unwell and was accepted onto NHS services within a couple of weeks for frequent physical health monitoring. It took 18 months for me to be offered any form of cognitive behavioural therapy (CBT) The weekly physical health sessions were awful and I used to dread them, I hated being weighed and would lie to my mum about my weight sometimes. Anorexia turned me into a lying, deceitful and manipulative person and as much as I hated being dishonest, I was so tangled up in the illness that I just couldn’t override it.

I was living at home at this point because If I didn’t have someone making me eat, I wouldn’t. Mealtimes were stressful, tense and sometimes quite traumatic. I had to follow a strict meal plan, and this was so difficult for me. All my food was prepared and served, and I had absolutely no control. For someone who has spent years following strict rules around food, this was torturous.

In April 2023, I had a DEXA scan (bone scan), which I had to request myself. At this point I still didn’t really see myself as unwell despite the abnormalities in my blood profile, and physical health. At a follow up GP appointment, I was told I had osteoporosis. I think retrospectively this probably triggered me to finally start engaging in recovery. For months I had been doing the bare minimum, eating what was in front of me when I had to but still hiding food, lying about food consumption and exercising without telling anyone.

It took a very long time for me to be fully committed to recovery, in fact I would say, summer 2024 was the first time that I really started to want to recover, and I wanted to live my life free of anorexia. I started setting goals, such as going out for coffee and cake, being able to eat tapas on holiday and regularly challenging myself. My last birthday in November and Christmas 2024 were the first times in 8 years where I haven’t dreaded the celebrations. Recovery has not been a linear process, there have been so many ups and downs, setbacks and moments where I questioned if I would ever get through it. I would not be in this position today if it wasn’t for my mum and dads unwavering support and persistent belief that I would get my life back. The tough love approach is brutal, and it really does test a relationship, but it was very much needed. I really hope they know how big a part they played throughout my recovery. My relationship with my sister has also rebuilt since I have recovered, and it fills me with joy that we go shopping and on holidays together and always have a good time. My boyfriend was there for me all through my recovery and I don’t doubt how tough it would have been for him at times. I believe it has made our relationship stronger, and I am lucky to have had him by my side.

I am now physically recovered and am well on my way to being fully recovered. I have reflected a lot recently on how far I’ve come in my recovery from anorexia nervosa and about all the little things in life I can now enjoy, such as a fruit scone, a chocolate bar after dinner and a cup of tea and biscuits in bed in the morning. I now exercise because I genuinely enjoy it. I like feeling strong, I love walking in the mountains for the views and serenity and I really enjoy the social aspect of going to the gym. All of this fills my heart with so much happiness. I’ll always look back on my journey through illness and recovery as one of the toughest chapters of my life, but I’ll be forever proud of myself for getting out of such a dark place. Life is infinitely better now, I’m happy and I’m so excited about my future.

It’s impossible to know what’s going on inside someone’s head by looking at them. Always be kind, don’t make judgements based on misconceptions and stereotypes and remember that the body heals a lot faster than the mind. Someone may appear physically well, but this doesn’t paint the whole picture.

I’ll finish off with a few tips for people suffering with an eating disorder

1. Always hold onto hope, Recovery isn’t linear, there will always be setbacks but with hard work, persistence and time you can get there
2. Set goals – start with small goals, such as going for lunch with a friend or having snacks at the cinema…. As you work towards these goals focus on self-reflection and consider things that are going well and things to work on.
3. Try journalling and writing down your feelings, I did a lot of this throughout my recovery and found it helpful. It’s also nice to look back on the progress you have made.
4. Remember you’re not alone, make use of blogs, lived experience groups, podcasts etc

Tips for family/ friends

1. Remember eating disorders are not quick fixes and are never fixed overnight.
2. Never blame yourself. Eating disorders are multifactorial. Don’t focus on the past but look to the future and hold onto the hope that they will get better
3. Be there for them. You don’t have to fully understand but try to empathise.
4. If you suspect someone has an eating disorder, asking them in a compassionate way by using phrases such as ‘I’m worried about you….’, ‘I could be wrong but I’ve noticed….’ Or ‘I’m only saying this because I want to help you…’ are far more compassionate and likely to achieve a better outcome than commenting on the way someone looks or behaves.
5. If relationships become strained, remember it is only temporary, as the grip of the eating disorder loosens, relationships will return to normal

Tips for HCPs

1. If someone comes to you and you suspect an eating disorder, ask the outright if they are struggling with food and have a low threshold for asking these screening questions. Eating disorders thrive in secrecy so by asking the question, it may initiate a conversation
2. Avoid stereotyping. Eating disorders can affect anyone.

Advocate for better medical teaching around the topic of eating disorders