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Caring for someone with an eating disorder can be an isolating and at times overwhelming journey, and we here at EDV are committed to supporting you on this journey. The content in this article is written by carers who have lived your journey, and survived! To subscribe to receive a monthly newsletters for Carers Coaches, please see here.

What do young people have to say about recovery from an ED?

Today we’re sharing a different perspective to provide hope and encouragement for carers that your young person can recover! Perhaps you may like to share this newsletter with your young person as well.

We have interviewed two amazing (recovered) young people about treatment from their perspective. Both had different journeys to their recovery.

J was diagnosed with AAN (atypical anorexia) at age 15 and P was diagnosed with AN (anorexia) at age 17. Both are strong advocates for those with aating disorders and provide insight into some of their thoughts and concerns throughout their eating disorder.

What were some of the warning signs that you might be experiencing an eating disorder?

J – Looking back, the warning signs for me were obsessive thoughts about food, baking food and not eating it or just watching a lot of food related videos and TV shows. I would also avoid social situations that involved food, and if I had to be in one, the over-planning of what I was going to eat when I was there. Also, the obsession with weight loss and being in control of what I ate.

P- For me it was a sudden interest in areas that had never brought me joy and that were instead dictated by the ED – e.g. excessive exercise, food and diets.  Also an inability to stop these behaviours that were causing me harm.  It was clear that I was no longer in control; this was not a choice that I was making anymore.

What prompted your initial engagement with health services?  Did anything make it difficult for you to do so.

J – My Mum took me to the GP because she was worried about my weight loss, but unfortunately it wasn’t the ideal start to my treatment.  Despite my weight loss I was still technically a “normal weight” according to my BMI, so my doctor at the time somewhat brushed it off, simply telling me to “eat a little more”. I think weight stigma was the biggest thing holding me back from immediate treatment for my eating disorder.

P – My parents!  If they had not driven (quite literally) me to appointments and treatment, I would not have chosen it myself. When you are so deeply under the control of your ED, you can become convinced that it is you and your ED versus everyone else.  This can make reaching out for treatment extremely difficult.

What implications did receiving a diagnosis have for you?

J- Receiving a diagnosis was extremely validating. It meant that there was a name to what I was suffering from and therefore a way to get out of it. However, at the same time, being diagnosed with “Atypical” Anorexia was also extremely invalidating. It fed even more into my eating disorder as it just felt like I had an eating disorder, but I wasn’t skinny enough to be diagnosed with “typical” Anorexia.

P- For me, I did not feel quite “worthy” of the diagnosis and struggled to accept it.  At the time, I could not see what those around me could see – someone who was unwell.

What was your experience in beginning a treatment plan? What treatment did you undergo?

J- My experience in beginning a treatment plan was rocky due to the weight stigma from my GP. Due to this, treatment was mainly driven by my mum until we eventually found a good psychologist, and then following that the Monash Butterfly Day program. I went to day program for three months and then continued with my own psychologist and dietician for probably another year after that.

P- Initially my treatment consisted of regular visits to a GP and a psychologist. As my health deteriorated this ended up resulting in an inpatient admission for 6 weeks.  Following this, my team consisted of a paediatrician, individual psychology sessions and FBT sessions. Once I had moved out of home for university the following year, I continued to see my psychologist, as well as (reluctantly) travelling back home every week to stay for one or two nights. Did I enjoy this? Absolutely not! However it was a necessary part in making sure I was gaining back independence in a supported way.

What role did friends and family play – at any stage of the journey.

J – My family played a huge role in my journey, as every day after I got home from the Day Program, they were the ones who essentially had to treat me. My mum ate every meal alongside me and supported me throughout my treatment, and I don’t think I could have done it without her. My friends were understanding of course, but my family was the main driving force in my recovery.

P – As I was 17 at the time, still living at home and undergoing intensive FBT, family played a huge role in the journey – whether I liked it or not! Put bluntly, if it were not for my family I would not have had the internal drive to recover. My body and mind were so depleted that simply existing was itself a gargantuan task, let alone thinking about the hard work involved in recovery.

I was completing Year 12 at the time and the majority of my peer group were supportive.  My beautiful brother gave a talk to the Year 12 cohort before I came back to school after my admission and this helped me feel less awkward explaining a six-week absence.

What would you say to parents or carers that feel afraid that the intensity required in FBT will permanently harm the relationship with their loved one or the family.

J – Beginning my treatment plan was a rude awakening to what I thought recovery was, as I had been in a sort of limbo with treatment from my GP until then. It took a lot of push from those around me to get me through it, because despite my will to recover, actually doing it and eating to my meal plan every day was extremely tough. I really am so grateful now they were able to support me to do this and I am still very close to all of my family.

P-  I absolutely understand the fear. I can honestly say now that I did not enjoy the process.  It was embarrassing and strange and completely out of the realm of “normal” for most families. However, did it harm any relationships? No. With the benefit of time I can see now how fiercely my family fought for me and how if they didn’t, I might be asking myself the question of “why did no one fight for me as an unwell child”? What can permanently damage relationships is continuing to let the ED have it’s grasp firmly on your child.

CC – What was the most helpful advice you received from others (service providers or family) during your recovery?

J – The most helpful advice I received from clinicians in my day program. I remember they kept stressing that your body has a ‘happy’ weight, a set point, and once you’ve reached it your body will just happily stay there. This was a game changer for me, as one of my biggest fears was that once I started gaining weight it would just never stop. I think knowing that eventually the weight gain would stop and I wouldn’t have to worry about what I was eating again really changed my outlook on recovering.

P- Externalising the ED self from my “healthy” self.  ED’s can be highly convincing and lead us to believe that they are our true identity and that to give it up is to give up a core part of ourselves. Recognising that this was one of the many lies that ED’s can tell was a crucial part in realising that the ED is actually not me at all – it is an illness.

My Dad once said to me “you are not losing a battle, you are winning one” after I was feeling especially distressed after challenging the ED. This always stuck with me as I was constantly being berated by my Ed for failing it and, consequently, myself.

What 3 things do you feel you did personally that helped most in your recovery?

J – I think the biggest things that helped with my recovery were my family and friends and that I had things that I wanted to do in the future, including university, travel, career and a family of my own one day. My eating disorder was going to get in the way of doing all of those things.

P –  Sticking with regular psychology sessions even though I was not always feeling that it was “working”, or if I was simply completely sick of talking about my ED

Putting my Ed out of a job – by expanding my toolkit in ways that I can cope with difficult emotions and experiences that cause me to rely less on my ED and more on healthier coping strategies.

What is something you felt hindered your recovery?

 J – Definitely my recovery was delayed by not getting a diagnosis early on in my eating disorder. 

 P- Ignoring the trauma that was keeping myself at war with my body. Turning to unhealthy coping strategies and feeling too afraid to talk about it.

What advice would you give to your younger self?

 J – The advice I would give my younger self is just to trust that you will get better. I used to think that it would just be the same forever, and that there’s no way my brain would ever think without an eating disorder voice. It seems impossible but it really can get better, and nobody ever regrets recovering from their eating disorder.

P – Your Ed is a bit of a shapeshifter and will morph into many different forms along the way – be prepared for this. It is sneaky.

What advice would you give to parents/carers or service providers working in the field.

J – The advice I would give service providers who currently work in or are thinking of working in the field of eating disorders is to be conscious of weight stigma and your beliefs about weight and health. As long as treatment providers are questioning these beliefs then I think eating disorder treatment will be much more accessible and will save lives. If someone is presenting with eating disorder symptoms, it doesn’t matter if they’re “underweight”, a “normal” weight or “overweight”, they are deserving of validation and treatment.

P – A common refrain I hear from parents is that “(childs name) is so capable in all other areas….but when it comes to food, it is like they are a toddler again”  Your child does not have an ED “despite” being high achieving – in fact , they often go hand-in-hand.  The traits of your child that can often make them so capable in these other areas – the dedication, perfectionism, immense drive to achieve – are those same traits that are being weaponised against them by their ED.

It is completely normal to feel that you missed signs along the way that are now, in hindsight, clear indicators something was not right. In fact, many early ED behaviours can be praised as endeavours towards health (clean eating, exercise).

In my role as a mental health counsellor I am yet to hear of a family that has undergone FBT and who have reported it permanently damaging their relationship. Your child may not be appreciative of your efforts until much later in their recovery journey. This does not mean you have failed, or that your relationship is irreparably harmed.

You are allowed to feel angry, frustrated and resentful towards the Ed – but try to externalise the Ed from your child as much as possible.  Your child is already likely to be consumed by guilt and shame at what their ED is forcing them to do and the impact they can see this having on those around them.

Looking for further guidance?

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