Amelie's story - My journey with anorexia treatment and PDA

PDA is Pathological Demand Avoidance, for me it meant that I wouldn’t do something just because I was told. I needed choice, I had to make my own decisions. With anorexia, this made my treatment different, but not impossible.

I’ve been in recovery for almost three years. It was a difficult journey, but I found what worked for me, it’s never a lost cause. Non-compliance isn’t misbehaviour, it means that the path you’re on isn’t for you. Here’s why and how my future changed once my condition was understood. Not being able to follow a plan doesn’t mean you can’t accept treatment; it just means the approach should be tailored to what you require.

When I was in year eleven, I was told that I needed to go into anorexia treatment in the community. I had a meeting with a mental health worker; I didn’t say a word. I didn’t listen to her either. I met a psychiatrist; she asked me what I would do if she placed a bowl of spaghetti in front of me. I said I’d be confused. She said, ‘What if I told you to eat it?’ and I said, ‘Why would you do that?’. She told me to imagine I was hungry, I wasn’t hungry, I had no idea what she was on about.

I attended a clinic at the hospital because my friends were going. I ate biscuits and candy in the waiting room, my restriction was never based on health. A nurse told me to have snacks, I was already having snacks, she told me fruit wasn’t a snack, I wasn’t eating fruit. I didn’t go to any therapy or meetings, I didn’t like them, I felt completely misunderstood.

I was offered therapy, asked to attend sessions with dieticians, medical staff and mental health workers. I didn’t go. I didn’t want to. I got weighed because I was competitive with girls in my year. When they were told not to do PE in school, I wasn’t. I didn’t go to the library during these lessons, I ran, I danced, I played tennis, and I knew nobody could stop me. This wasn’t because I didn’t want to recover, it was because I felt pushed, so I pushed back harder.

I was told to stay on bed rest; I went to school anyway. I liked school, I liked being social, I liked messing around at the back of the class and wandering the corridors to find and join a game of Kahoot. I stopped attending detentions and isolations.

The more I stopped caring, the harder it became for the mental health team to be involved. When I was admitted to the paediatric ward, I was put on their three-week treatment plan. I was discharged after a week for non-compliance. I still to this day hate that word, they made it sound like I was being naughty, when in fact I struggled to understand why I had to sit with someone and finish food within a time frame, why I had to have a full replacement if I didn’t.

‘Why? Why? Why?’ kept running through my head. I couldn’t do it just because they said so, the more that they explained, the further into denial I went. It made no sense! ‘I will eat in my own time! If I’ve eaten a bit, I do not need replacement!’.

I wasn’t naughty, I was struggling, and I felt like they’d given up when I was sent home, as if I couldn’t be cured. I felt stuck and alone.

After my admission on the Eating Disorder Unit, I didn’t know how to recover. I was transferred at 18, I was terrified of an adult ward - the admission that was meant to save me just left me more adamant to defy them. They forced me to be in a healthy body but never taught me how to maintain it. I was with a new eating disorder service as an adult, and that’s when everything changed.

My dietician asked me what I could manage, she didn’t try and tell me what to do. I chose the food; I chose the times; I chose the amount. I wanted two small meals a day, she made sure those meals would keep me alive. Not fix me, not get me healthier, just sustain the body I had. I wasn’t living, I wasn’t happy or healthy, but I was finally able to give myself the life support rather than others forcing me.

And with that control, I felt safe.

One day, I decided I’d had enough. I was going to choose recovery, I had lots of friends and family supporting me, encouraging me, I knew within myself that I could take that step. It was messy, it wasn’t planned or mapped out. But it was a start. I didn’t have any hunger cues, so I decided to work with my dietician.

I slowly added more challenging foods to my day, more snacks, and a month or so later, I was scared because I was binging, and the dietician told me about the caveman brain. If you’ve starved yourself for a long time, when you allow yourself that freedom your primitive instinct is to get as much as you can in, because your body doesn’t know yet when you’ll be able to eat again, it wants to restore everything immediately. This would be initially dangerous because if the body gets too much nutrition after lacking it for so long, it can cause medical problems. But after a slow increase, I was stable.

Then I relapsed, the restriction made my psychosis worsen. I ended up in prison. And that’s where I learnt what recovery for me truly was. Not fear or binging or improvisation. It was an officer on standby to hand me something from my snack bag when I was ready, it was communal meals with ‘regular’ women at set times each day that I was encouraged, not forced, to attend, it was having people around me who’d either struggled themselves or had experience with others, understanding me and giving me unfiltered advice.

No clinical language, no banned words, no official plan, no NHS-approved coping skills. That’s when I truly started recovery, that’s when I learnt hunger cues, I had regular meals, I learnt to live again and trust my body despite being so confined. I learnt to go to the gym for fun, run around the yard, exercise because I can and not because I have to. Eat because I want to, not because I’m forced. Relearn what foods I like, what foods I can’t stand, how to enjoy it rather than get through it.

It took my whole time there to really understand that. There were ups and downs, days where I gave up, days that I started trying again. Recovery is a wriggly worm, but that’s kind of the beauty of it. The lows teach you how to survive, the highs teach you why it’s worth it. And those bits in the middle where you’re just getting by, that teaches you how to live.

Six years ago, I didn’t know what to do, I thought I’d be trapped forever, I thought compliance was the cure, I was jealous of those who could do it, I was angry at myself for ‘failing’. Now, I look back and wish I’d known there’s not just one road to recovery. That nobody is ‘hopeless’. That there is no way to ‘do recovery wrong’.

As a note, I fully believe that harm reduction is so much more effective than harm prevention. Meaning, I think that by offering and helping someone to survive with harm is better than removing any opportunity of harm and leaving a lack of options. This applies not only to eating disorders, but all behaviour linked to mental illness. I could go deeper into this, but that’s not the focus of this blog!

I wish all those years ago, I’d felt more able to say, ‘this isn’t working’, instead of avoiding and running away from those trying to help. I wish I’d told my team that I needed more control, I wish I’d taken matters into my own hands before it was too late, I wish I’d had that courage, I wish I’d not had to learn to get better in the criminal justice system. But I’m grateful that I did, because I discovered what I needed, not what others thought I should.

If you’re sat there dodging therapy sessions, tearing up meal plans, feeling too pressured by medical professionals to function - speak up.

There are so many other options, healing isn’t a list of chores to do reluctantly because you’re being told to, it’s having the determination to do those chores, even if you really don’t want to, to make your life better, for yourself.