A Lived Experience Q&A from our Eating Disorders Beyond the Unknown podcast guests
Navigating the Australian health service system while battling symptoms of an eating disorder is a challenge for those seeking help. MHPN’s podcast episode ‘Eating Disorders: Beyond the Unknown – Episode 2 – Understanding Anorexia,’ features mother and daughter, Julia and Jess (21), who shared their story of recovery.
In addition to telling their story on-air, both Jess and Julia share the highs and lows of their help-seeking journey in the following Q&A, which provides valuable insights to help health care providers better support individuals beginning their recovery journey from disordered eating.
Life before diagnosis
Jess (21) – Looking back before you began your recovery journey, what were some of the warning signs that you might be experiencing an eating disorder?
Looking back, some major warning signs for me were obsessive thoughts about food, whether that be about my own food intake or simply just watching a lot of food related videos / TV shows. Another huge warning sign was my avoidance of any 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. And of course, the other obvious sign was an obsession with weight loss and being in control of what I ate.
Julia (mother) – Looking back before Jess began her recovery journey, what were some of the warning signs that she might be experiencing an eating disorder?
The early signs were quite innocent looking at the start. It began with the expression that she wanted to ‘eat healthier’. Initially this looked like cutting out snacks and desserts and takeaway foods. However, it expanded to a much longer list of foods, which eventually included cutting out all meat, dairy, most carbs…the list of foods that she would eat became shorter and shorter. I would get extreme pushback if I suggested she eat a food on the rapidly growing exclusion list. She did a lot of baking for the family but wouldn’t eat any of it herself; she watched a lot of cooking shows and pored through cookbooks; she preferenced using small bowls and small utensils; told me she had already eaten breakfast or didn’t have time and, as I later found out, was throwing away her lunch at school. She spent a lot more time in her room away from the family, which was unusual and mentally she was very sad, angry and on edge all the time. She wore big baggy clothes so I couldn’t really see her body and she was cold all the time…with freezing hands and feet.
Diagnosis and starting the treatment journey
Julia – What implications did Jess’s diagnosis have for you?
That diagnosis was a shock, but also not a shock, because we both knew something was very wrong and didn’t understand what to do to turn things around. Once I realised how intensive her recovery would be, I took a leave of absence from my job. I didn’t return to that job for more than six months.
Jess – What was your experience in beginning a treatment plan?
It was rocky due to the weight stigma from my GP. Due to this it was mainly driven by my mum, until we eventually found a really good psychologist, and then following that the Monash Butterfly Day program. Both of these things were huge stepping stones in my recovery, and we wouldn’t have found them unless we were searching ourselves. 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.
Julia – What role did friends and family play – at any stage of the journey?
In the beginning we kept the diagnosis fairly close to home, for her privacy. We were really struggling to understand the best way to help Jess and therefore didn’t share what was happening very widely. I had a couple of very close friends that I shared the diagnosis with and Jess did the same. None of the friends I spoke to had had any experience with an eating disorder, so it was very isolating for us. Our families all live out of state/country so could only provide support from afar. We travelled to see my family in QLD for Christmas early in refeeding and shared the diagnosis with them. They were fantastic and we gave them lots of information in advance of our visit about how to best support Jess while we were staying there.
Strengths and weaknesses of the service system
Jess – What prompted your initial engagement with health services? Did anything make it difficult for you to do so?
I think my story is pretty unique. I really wanted to recover, though I didn’t know how I was going to do it. Of course I was terrified, but I wanted to stop feeling so constantly awful. This prompted my initial engagement with health services, but it definitely wasn’t an ideal start. 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 [in health care providers] was the biggest thing holding me back from adequate treatment for my eating disorder.
Jess – What implications did receiving a diagnosis have for you?
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.
Julia – From your parent/carer role, what prompted your initial engagement with health services? Did anything make it difficult for you to do so?
Our initial engagement with health services was a visit to the GP because Jess disclosed to me that she had not had a period for many months. We weren’t a family that went to the doctor very often, so we didn’t have a ‘regular GP’ who knew her. I was also aware by then that Jess had lost a substantial amount of weight and even though that was worrying for me, I didn’t yet understand the seriousness of that. At this point Jess had lost just over 25% of her starting body weight.
This visit to the GP was a ‘sliding doors moment’ where an eating disorder could have been identified right there, and then and it wasn’t. Instead, Jess was weighed and told that she was ‘still a healthy weight’, despite the fact that she had lost so much weight that she was not menstruating. We were also told that ‘her body has probably just gone into shock from all the weight loss and if she just maintains this weight then it will probably just come back’. This set off a period of weekly visits to the GP and various psychologists etc, all with no diagnosis and no explanation to me of what I needed to do to help her recover, dragging on for most of the year. Finally, her psychologist at the time said ‘let’s stop dancing around this and call it what it is: an eating disorder’.
It is unfortunate that this long delay in diagnosis, based on weight stigma, contributed to further entrenchment of the eating disorder.
Also, the additional months without a period and the deleterious impact that had on Jess’s bones, led to the development of moderate osteopenia (after a DEXA scan that I had to ask for – it was never suggested by the GP).
Julia – What was your experience in beginning a treatment plan?
In desperation at this point, I turned to Eating Disorders Victoria (EDV) and asked for assistance finding a new GP. They put us in contact with a psychologist with experience in eating disorders. From there, Jess started regular therapy sessions and a weekly recovery support group. Jess found the Monash Butterfly Day Program online and told me she thought this was what she needed. I then contacted that program directly and had our GP complete all the tests so Jess could start almost immediately.
Up to this point, I feel that we were not given a pathway by any of the professionals we had seen and everything had to be driven by us.
I never even knew of the public Child and Adolescent Mental Health Services (CAMHS) pathway options until I started working at EDV.
Jess – What role did friends and family play – at any stage of the journey?
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.
Julia – What was the most helpful advice you received from service providers during your recovery journey?
I think the most helpful information I received along the way was from the day program psychologist who helped me to reflect on my caring style and whether it was helpful or not for Jess…turns out me being a ‘terrier’ was pretty annoying for her!!
Julia – What advice would you give to service providers who currently work in or are thinking of working in this field?
Please learn as much as you can about eating disorders and continue to keep your knowledge up to date with new findings/studies. Question your own biases/understanding around weight vs health and learn about Health at Every Size. Learn how to identify an eating disorder and the best evidence treatment modalities available.
Eating disorders exist through all age groups, all body sizes, all genders, all cultures…be curious, ask the questions.
The full recovery rate from a restrictive eating disorder such as anorexia remains abysmally low so early intervention and immediate action is key to helping as many people as possible recover and go on to fulfilling lives…learn how to be a part of the solution!! For an adolescent sufferer, the carers/parents are key to doing the hard work of refeeding at home so learn how to support and empower them – this is hard work for everyone but the rewards are huge.
Jess – What advice would you give to service providers who currently work in or are thinking of working in this field?
The advice I would give service providers is to be conscious of weight stigma. Whether we like it or not we’ve all had weight stigma ingrained in us – and that’s not okay. As long as treatment providers are actively going against these preconceptions, I think eating disorder treatment will be much more accessible, and will save thousands of more 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.
Jess – What was the most helpful advice you received from service providers during your recovery journey?
It was at the day program I was part of. I remember they kept stressing that your body has a weight it’s happy at, 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 really changed my outlook on recovering.
Julia – Tell us a bit about yourself as an advocate in the area of eating disorders.
After Jess’s diagnosis, I turned to online peer support, searching Facebook to see if I could connect with other people experiencing the same thing as us. I found my way to an international parent support group (where I am still an admin) and they were amazing…I am still friends today with many of the people I met online and in person. Initially we were very private as a family about Jess’s illness and recovery, but as she continued to recover, she became more open about her journey and therefore I felt able to do the same. My journey to advocacy has evolved over time, starting with online peer support, reaching out to parents locally when they had a new diagnosis to provide peer support and being asked to participate in newspaper and television pieces on eating disorders.
This then evolved into taking up a volunteer role at EDV in 2020, co-facilitating their monthly carer support group, Rally. I then took up a new role in 2021 at EDV in their Carer Coaching Program, a pilot program that came about as a result of the huge demands on the mental health system during the pandemic and increased waitlist times. The Carer Coaching Program provides early intervention psychoeducation and peer support for carers with adolescents who are waitlisted for formal treatment. We have had some amazing feedback from carers about the value of this service and are in the process of collecting quantitative and qualitative data on the effectiveness of the Program and are looking into presenting this at ANZAED 2022.
Julia – What advice would you give to someone beginning their journey to recovery?
Gosh, this is a harder one for me to answer. Recovery is a leap of faith…it will be hard work. But the reward of a fulfilling life, free from your eating disorder, is huge. Make that phone call, send the email, be brave and go to that support group. Reach out to support organisations such as Eating Disorders Victoria, Butterfly, Eating Disorders Families Australia… there are so many great people who want to help you to get there.
Jess – Tell us a bit about yourself as an advocate in the area of eating disorders.
I consider myself an advocate for all people with eating disorders, especially those suffering with atypical anorexia. Despite my dislike of the term atypical, I know that there are thousands of other sufferers that struggle with this diagnosis (or lack thereof) that need voices in not only the medical community, but in the field of eating disorders itself.
Jess – What advice would you give to your younger self?
The advice I would give my younger self going through an eating disorder is just to trust that it will get better. I know I always 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 being its voice. It seems impossible but it really can get better, and nobody ever regrets recovering from their eating disorder.