It’s long past time I did an update about Star. It’s not easy to write and this is about the 5th draft I’ve worked on. First – the good news. We have had the first stable week in 9 months, since I quit work, pulled Star out of school, and started an intensive treatment 10 days ago. She has responded to it magnificently, we are already seeing improvements and are ecstatic to have found the right track at last. We have a team of support personally and professionally and we will continue to refine the approach over the next few months of recovery.
The knee injury last year started a mental health decline for Star that we have struggled to stop. She faced multiple challenges across many life areas – busting up with her boyfriend who went on to date the girl who injured her and then denied it. Having her reputation harmed by a boy who lied about her. Being ‘slut shamed’ by a group of guys who bullied her. School went from being her safe place and haven to a misery. Her mental health disintegrated and she found it harder and harder to eat, drink, and look after herself. We wound up in medical crisis with chronic dehydration and lack of food, the start of purging, warning signs of heart problems, disrupted sleep, mood, thinking, and memory. We tried lots of approaches which didn’t work, or didn’t work enough, or even made things worse.
The approach that is working is called Family Based Treatment (FBT). It’s intense and at times incredibly stressful. Star is with someone at all times, and required to eat 3 meals, 3 snacks, and drink 6 cups of liquid every day. Sometimes that is pretty easy and sometimes it takes everything.
We have bounced around the public mental health system, through emergency departments, ACIS, SEDS, a number of possible diagnoses and various specialists using the money originally fund raised for her knee surgery. We are making progress on the jigsaw puzzle of how we got to this level of crisis and what to do about it. There’s a number of diagnoses being explored to help us develop the best approach. It is looking likely that Star is autistic – something often missed in girls because it presents very differently to boys. The chronic strain of trying to cope with and hide differences such as her sensitivity to noise, difficulty with change, and a very literal approach to communication has taken a toll on her mental health. We are currently in the process of formal diagnosis with a specialist psychologist.
She is also likely dealing with a type of restricting eating/feeding disorder called Avoidant Restrictive Food Intake Disorder (ARFIDS) which in her case means her sensory issues with with things like the texture of food have led to huge food and fluid aversions. Most of us can make ourselves eat or drink something we don’t like every now and again. In Star’s case her aversions have been getting much worse over time, and after a while it simply becomes impossible to make yourself eat and drink when you find it revolting and distressing. We are working with a team of people to help tailor the Family Based Treatment around these issues and hopefully she will not just become more medically and psychologically stable, but we will also be able to help her desensitise so that the whole process of eating is much easier and she can be back in control of it herself. Our backup plan is inpatient treatment in a hospital interstate. We are also digging into her long history of digestive issues (she was premmie and very unwell as a child) and gathering scattered medical records to try and understand these issues better. It may be that something such as a food allergy has been missed which is causing chronic pain and nausea. The more we know the better we can tailor the treatment.
Eating disorders and restricting are often very difficult to understand, for the person who is struggling with it as well as others who don’t know what it feels like. There are a lot of myths and misinformation out there which make life a lot harder for everyone. Star is not merely being stubborn or in a power struggle with us. Star has a strong needle phobia and yet at one point recently was submitting to a blood test in the emergency dept rather than drink a sip of water – it is that powerful and that hard for her at times.
I have had to overhaul a lot of my parenting approaches and go back to a basic principle of ‘do what works’. Our gentle trauma informed care approach has had to be modified to fit a very authoritarian ‘I know better than you what you need right now’ approach as the starvation has a severe impact on judgment. Watching Star sit in medical appointments apparently indifferent to the health risks has been chilling. And so far the signs are all extremely promising. We are seeing significant improvements for Star already. She has worked incredibly hard – all meals and drinks taken in and no purging. We are seeing signs of our bright bubbly girl again.
It is not Star’s fault she has struggled with this so much – that sounds so obvious and yet when faced with someone who seems simply stubbornly unwilling to take a sip of water, it’s hard to remember that no one chooses to have an eating disorder. She is a brilliant, diligent, caring young woman, and devoted sister to Poppy. It has been a roller-coaster for the past few months and I expect it will be more the next few too. But right now, the signs are good that we are on the path out of this dark time in her life.