Patient stories
Here we share some patient recovery stories
If your young person would like their story to be featured, please get in touch with Lara by email at lara.barnish@oxfordhealth.nhs.uk.
Amelia played a high level of competitive sport, and begun to feel overwhelmed by other stress factors in her life. She overcame her eating disorder and now reflects on not having ‘missed out’, but focussing on how to move forward learning from her experience and building a future. You can read her story here:
Amelia's Story
Backstory
- I grew up playing a high level of competitive sport, and towards the last couple of years began feeling overwhelmed by other stress-factors in my life
- I felt like I had no control over anything in my life, and so looked for where I could take some of that back
- For a while I had been criticised for my eating habits, despite having always had such an intuitive and positive relationship with food, and so felt that this was an area I could regain some of that control
- I originally went to the sport’s dietician just for a structured meal plan, and left with a rigid weight loss plan with numbers I had no understanding of at all
- With comparisons, social media, and the stress building up, I began to spiral and things gradually began to decline
- Food and exercise turned from something I loved, into something that became an unhealthy, toxic obsession – both of which I lost my love for in the process
- It was when I finally came under treatment for my eating disorder that I reached the most difficult point in my journey
My recovery journey + advice I have
- Eventually, and the timing can be different for everyone, I came to the point that I realised I didn’t want to let this keep me from my loved ones any longer, so I began to initiate some change myself
- I began reading more mindfulness books, like Eckhart Tolle’s ‘Power of Now’, and started doing reflection exercises every morning and night: in the morning I would write down three things I felt grateful for (it could be anything from having the most supportive mother to being grateful for the fact that I have a journal I can write in), and in the evening I would write down three things that made me smile that day (sometimes it was that the sun was shining through the trees when I went outside and sometimes it was that I got to see my friends that day!)
– this helped me shift my focus day-by-day from focusing on my feelings towards food and my body to the experiences that brought me genuine joy and gratitude on a daily basis; it made my days feel exciting again and gave me something to look forward to every morning and night - For everyone this will be different but for me going out for meals with friends and family helped me so much
– being in an environment surrounded by people simply going out to enjoy a meal with their loved ones, no toxic, unhelpful behaviours but purely to be there for memories reminded me that food is not only essential to survive but essential to enjoy life
– I learnt to laugh over food again, and not think about it for numbers but rather for the memories it brought
– I got excited about trying new places, and trying foods from all around the world; where when I needed that extra encouraging I had it right there
– it was seeing others being so at ease that made me realise I didn’t want to be stuck anymore, I wanted to be free
– for those that struggle with calories on menus, my best advice is to go with someone you feel comfortable enough to ask if they can read the menu to you or ask the waiter if they have a calorie-free menu (this is usually available or at least in their website online) - I found the language I used was so important, where at one point saying things like ‘challenge’ and ‘battle’ really motivated me, but gradually it led to me feeling stuck to a very combative mindset that kept the thought of the ED at the forefront of my mind
– instead, I began to shift this mantra – where I began to use words like ‘overcome’ and ‘progress’, or ‘learn’ and ‘observe’
– I’ve found that rather than giving those thoughts attention, by ‘fighting’ or ‘challenging, and bringing them to the constant forefront of your mind, if you just let them be, acknowledging they are there but knowing not to act on them, they will gradually get quieter and quieter to the point that you do not even notice them anymore and eventually they will disappear - With diet culture in society and people making triggering, ignorant comments, I’ve found that I’ve had to learn to simply accept that we are all on different journeys in life and what they say does not apply to me
– I do not deserve to live a restricted life just because someone else is engaging in diet culture behaviours/language
– and sometimes that’s all it is: language! A lot of people do not even realise the amount of things they say that are rooted in diet culture, but often they won’t even act on what they have said. For example, I have found so many times people demonise a particular type of food, and then go that exact evening to eat it for dinner. Diet culture has become so normalised to the point that many people do not realise how what they say may affect others
– of course we cannot control whether or not we develop an ED, but we can control how we react and look at certain triggers, how we help ourselves and remember that we deserve to live a life of freedom, not restriction - In terms of body image, there was a period I really struggled with seeing myself in mirrors or pictures so my biggest pieces of advice are the following:
– if needs be avoid mirrors, especially at a moment in time where you feel you may be more prone to getting triggered
– when taking pictures, do not look at them straight away – allow yourself to enjoy the moment, give yourself some time and take a look at it when you feel ready to; sometimes, I found, in an environment where a lot is going on our brain may be more jumbled and body dysmorphia may be higher
– if you feel like you have been through a particularly difficult period in your life, you may find that your face looks sadder/sunken/difficult to smile: please do not panic. I found it extremely difficult to find any information on this and was told ‘this is just your face now’ which left me horrified as I could not recognise myself in the mirror at all.
– Keep with recovery, keep being kind to yourself and doing mindfulness practices to put your wellbeing first; as you heal your inner-self I promise that it will show and your face will come back
– think about how you think of your loved ones and why you have love for them; personally not once does any thought about their body comes up. I do not value those I love based on how they look and so they same goes for the people that care about me too; my value does not depend on my body - I found it hard to return to my competitive sport because of the negative associations I had developed with it over the last couple of years, but I when I started more forms of movement I tried to find a way to rebuild my neural pathways to see exercise as something to be enjoyed rather than something that ‘had’ to be done
– I tried new sports: ice-skating, rock climbing, riding my bike… things that I never associated with disordered behaviours and genuinely loved, and this helped me so incredibly much - Throughout my recovery I kept reminding myself what I was doing this for; to be able to enjoy both the big and little moments in life again (to go to university and also to simply enjoy a coffee and cake out with a friend), to not feel constantly controlled by numbers and obsessions, and to be able to work towards my dreams: helping as many other people as I can
- I did a lot of journalling and self-reflection. Writing has always been a huge part of my life and something I’ve always loved. Throughout my treatment process I kept a little journal where I documented my whole experience, but knowing that I wanted to help others I started writing my story into what I hoped would become a book
– I ended up writing about 70,000 words, but as I went along with writing and continued with my process of healing, I began to realise that the mantra was not one I wanted to share with the world anymore
– by the time I finished, I realised how much anger and frustration was in it, and how this was not the message I wanted to give to the world
– so I never released it, but rather than seeing it as a waste, I saw it as an essential part of my recovery, an outlet for me that I needed at the time to let out my emotion and to realise the kind of message that I wanted to share instead was one that would be much more optimistic, hopeful and positive; to show that full recovery is possible for anyone
Where I’m at right now
- I made the choice, despite being told it would not be possible or good for me, to do my A-Levels in one year due to the time I had missed from the illness
– I felt like I knew I could do it, but also gave myself the leeway that if I felt I was becoming too overwhelmed I would give myself another year
– I took such good care of myself, prioritised my well-being and ended up really enjoying doing my exams in the one year, getting into my top choice university - I wanted to share this because it is possible to achieve anything you set your mind to: whether that be enjoying your exams, getting the grades you want or recovering, fully, from an eating disorder
- It is never too late, there is always hope and it is always going to be worth it
- You have not missed out on time, life throws so many curb-balls – but rather than holding onto the memories of those points in our lives with anger and resentment, its how we learn and evolve from those experiences, and what we do with them in future
- I hope to use my journey to help and inspire others, where now I have started getting back into my sport again, but purely for the enjoyment aspect and only playing when I feel like playing, I have gotten into my writing so much more, enjoying meals out with loved ones and have been getting involved in as many activist projects as I can to try and help as many people as possible
- I always want to remind people of how much value they bring to the world, any person and any story has a purpose, and every life is worth living to the fullest – everyone deserves recovery and everyone can.
Mary struggled with an eating disorder, self harm and suicidal ideation. She was diagnosed with autism at the age of 17 years. She had several admissions to a day unit.
Mary's Story
Mary who is now in her twenties and training to be a Mental Health Nurse, shares her story for those still on their journey.
Mary didn’t respond well to the pure FBT approach and described one nurse as “apple crumble” lady, insisting Mary should have apple crumble or equivalent every day. This was simply too much for Mary and resulted in mealtimes being akin to war zones.
Mary was diagnosed with autism at the age of 17 and was supported in what she describes as a more “dolphin” style gently nudging approach. For example, using food chaining to gradually introduce a wider variety of foods at a pace Mary could tolerate. As she described “I could make a series of little choices and we could patch it up together” and “custard and chocolate milk are ok – apple crumble is not”. A person centred approach.
Mary was also discharged from the ED service at the age of 17 and struggled with self harm and suicidal ideation as the ED voice continued to rage “you are fat and ugly” incessantly. Mary had several admissions to a day unit to address her lingering struggles and at the same time continued with her studies taking 3 years to do her IB so as “not to put too much pressure on myself”. Mary chose to explore the topic of FBT for anorexia for her extended essay and this further fuelled her desire to work in the field of mental health and give something back, having learnt so much from her own personal journey.
Mary also has a very creative side and has found doodling a great way to express herself and share her journey and ideas around recovery.
Recovery doodles by Mary on Etsy. Doodles and Zines on experiences with mental health and autism in the hope it might help some people.
Peter had an inpatient admission at the age of 9 years due to a fixed dissociated state from “school related trauma” due to undiagnosed needs around ADHD & Dyslexia, high anxiety and autism.
Peter's Story
What happened before
Peter was diagnosed with autism and had support from a clinical psychologist in CAMHS from the start of Year 1 due to anxiety. He was in mainstream school with average academic results and so schools refused to accept his diagnosis and put in place support. They also made allegations about his mum (making up his difficulties and ‘conning’ CAMHS). Because of the poor relationships between the adults his ADHD and dyslexia went undiagnosed and were also unsupported. Peter’s anxiety also stems from demand avoidance, and he worked furiously to manage school, fit in, and achieve academically.
By the age of 9 he was broken. He went into a fixed dissociated state (presented as though he had a brain injury) and needed a psychiatric hospital admission. The local Tier 4 CAMHS stated “school related trauma” and tried to arrange a bespoke (for a 9-year-old) admission in an adolescent unit. However, it was not possible and so he was put on the National waiting list for a bed. He was admitted 150 miles from home.
Hospital stay
Peter was in hospital for 20 weeks in total. The highly controlled environment made him feel safe, and he started to recover some of his skills around normal speech and self-care for a 9–10 year-old (it was 3 years though before his cognition fully returned). At the 6-week meeting (CPA) it was agreed he could be discharged after another 4 weeks, but that he would need a residential special needs school. Obtaining an EHCP and funding for a school led to another 10 weeks of delays (and a lot of work from his mum and the hospital) before he could be discharged.
What happened next
It was another 5 months before he started his next (4th) School. He has been educated via and EHCP since Year 5. Finding the right school support was difficult. He needed a residential setting but SEND schools were not a good fit. From the age of 13 Peter has been in the same school (an independent tutorial college) with appropriate teaching, weekly clinical psychology and weekly speech and language therapy [SaLT] (for communication skills). A late diagnosis of (and treatment for) ADHD has made an incredible difference and seems to have been the missing part of the jigsaw.
The combination of his strong desire for friendships with quality SaLT provision he has developed incredible social and leadership skills and has several strong friendships. The strong bond with, and consistent support from a clinical psychologist has enabled resilience and more robust mental health. He completed a reduced number of GCSEs as he continued to recover, but by A levels was able to study sufficient to apply for Russell Group universities.
On reflection
Peter and his family feel that without the admission to Tier 4 unit, his mental health, overall wellbeing, social and educational outcomes would have been extremely poor. It was a very difficult time for all the family, but we are grateful for the care he received and the support they gave for the provision of an EHCP that was robust enough to ensure ongoing recovery alongside an education that enabled him to manage school socially and academically. He has thrived in his last school for more than 4 years – not simply survived. There have been some extremely challenging times but without the admission to Tier 4 we do not think he would have the amazing quality of life he has now and a future studying at university that seems to be before us.
Sidney had several inpatient stays under Section’s 2 & 3 of the Mental Health Act. At 17 years she was finally diagnosed with autism with a demand avoidant profile.
Sidney's Story
What happened before
Sidney never responded to typical parenting styles, unlike her older brother. Sometimes just ‘quirky’, occasionally she was really difficult to understand and manage. When she reached Year 8, her parents were called into school to discuss ‘behavioural issues’ and underachieving. They raised their suspicion of autism, but it wasn’t investigated. She was referred to CAMHS in Year 8 for counselling sessions but these only lasted a short time as she didn’t connect with the counsellor and felt uncomfortable missing lessons at school during the day. She continued to struggle on, clearly depressed but refusing to seek help from medical professionals due to her previous unsatisfactory experience.
Hospital stay
Sidney was admitted to hospital in Year 10 after attempting to take her own life with an overdose. She was detained under Section 2 of the Mental Health Act and admitted to an adolescent general unit. After admission, things got a lot worse; she stopped speaking and stopped eating and drinking. She was tube fed under restraint by a team of staff. During a fire alarm activation, she absconded from the unit and was found by her parents later that evening walking in bare feet. She was eventually persuaded to come home although she wouldn’t return to the unit. She refused any food for a number of days and was detained under Section 3 and taken back to the unit.
She was transferred to several different units and spent a total of two years and five months under section. At the age of 17, she was finally diagnosed with autistic spectrum condition with a demand avoidant profile. She was discharged to home and although still unwell, embarked on a college course. Just before her 18th birthday she absconded from college and was found by her parents later that day. She was briefly admitted again to a CAMHS unit and again discharged home just after she turned 18. Three months later, she took a large paracetamol overdose and was taken to A&E after many hours of refusing to seek medical help. She was again detained under section and was admitted to an adult female unit but was discharged home two weeks later. She continued with her college course and from that point on, recovery continued without major setbacks.
What happened next
Sidney is now 19 and has completed two years in college including studying GCSEs in Maths and English. She slowly normalised her eating patterns and now has a healthy relationship with food. She learnt a lot about autism and has developed a working knowledge of how to manage and cope. She is now looking ahead and feels as though she’s settled back into society and is happy and thriving. Sidney has also got a part time job and has managed to improve her academic and social skills giving her confidence in herself and in various activities and experiences to help keep her happy and busy. She is now exploring different university options and learning to drive with optimism about her future.
On reflection
Sidney managed to start various routines which played a big part in stabilising her and giving her something to work towards and concentrate on. Although she struggled to improve her mental health and break harmful habits she developed when unwell, she continued to open up to individuals around her and let people support her and understand how she’s feeling.
Page last reviewed: 27 June, 2024