Over the last few years that I’ve ‘gone public’ with my mental health as it were, and especially since I started writing this blog, I’ve become pretty open and honest.
Online and in real life, both of which have been freeing and liberating. Mostly it’s okay but in some ways it still feels alien to me, and now is one of those times. But I feel a sense of responsibility I guess, in this ‘advocacy’ role that I myself and others have assigned to me. I want to be part of ‘the change’, and doing that requires, on my part, a certain amount of transparency.
So, here I am. Transparent.
About four years ago, I was diagnosed with bipolar disorder – this is something that most of you know about me. By this stage, I had been ‘recovered’ from anorexia for around two years, and had managed to maintain not only a stable weight – at not just my minimum weight but my actual set point – but healthy and flexible eating. This was the first time in my life that I found myself in a position where I was so well.
After I was diagnosed, I was presented with a list of pharmacological options, all of which were antipsychotics. Olanzapine. Quetiapine. Aripiprazole. I’m a mental health nurse, I know what the side effects of these medications are. I knew I wasn’t going to touch olanzapine with a barge pole – the idea of the what was in my mind virtually inevitable weight gain was horrifying to me. So that left me two choices. Quetiapine – risk of weight gain, but also very effective for mood stabilisation. Aripiprazole – less likely to cause weight gain but not as effective. Coming off the back of a manic episode that completely knocked me sideways, I was willing to take the risk.
It turns out, in hindsight, that I shouldn’t have.
Please bear in mind that many people take quetiapine (and olanzapine for that matter) and find them incredibly helpful, so this is just my personal experience. But it truly had an enormous, negative impact on my life. I was suddenly a zombie. I was sleeping for 14 hours a day. When I was awake I couldn’t string a sentence together. I was forgetful, I couldn’t concentrate, I could barely keep my eyes open or move around. My mouth was so dry my tongue and lips bled. All of that, even though I was barely functioning, I was tolerating. Until I gained weight. I make it my policy here to talk about these topics responsibly so you will never see me talking about numbers: weight, calories, BMI. But what is important to mention here, because it is a pivotal part of this story, is that I gained a lot of weight and I gained it very quickly.
Suddenly I found myself at the highest weight I had ever been at in my life. My clothes didn’t fit me anymore. My body image, that I had worked so hard to repair, totally disintegrated. I was almost overnight completely overwhelmed with those familiar feelings of being so disgusted with myself that I wanted to pull my own skin off. I tried so hard to tolerate it, I really did – I desperately didn’t want to relapse after all my hard work. I tried to watch what I was eating but in a sensible way. I changed medications to aripiprazole and found myself entirely unable to sit still (akatheisa for those of you who don’t know), or sleep, or eat, and through doing this I (genuinely by accident), lost a little bit of that weight.
Almost immediately it was as though a switch flipped in my brain. One of my therapists once told me that I am someone who will never be able to ‘safely’ go on a diet. My mind can’t handle it. Sadly, I discovered that this is true.
My thoughts went from 0-100. If I cut out xyz, just for a week, I can lose a little more weight. If I go to the gym just one day a week extra this month, I can lose a little more. If I purge, just this one time, what I’ve eaten today won’t count. The problem is, it’s never just a day, or just a week, or just a month. It was like one day I didn’t have anorexia and the next I did, I fell so, so fast. And I feel incredibly stupid in hindsight for not realising that.
I honestly feel like anorexia had stuck its claws back into me within just a number of days. Within a few months I lost all the weight I had gained plus extra, and I felt like death. My hair started falling out, my nails were snapping. My teeth hurt. I fainted at home alone and spent the next two days in bed with a headache so bad I had to sit in the dark. My body was telling me to stop, but it was too late. I couldn’t.
I was in the last year of my degree – almost at the finish line. I had already lost my GCSE’s, the chance to do my A-Levels and my Access Course to this illness, and I was so determined it wasn’t going to happen again. I was too close to fail and my education was too important to me. So with my tail between my legs I sloped back to my doctors surgery and asked for a referral back to the eating disorders service for what would have been my third round of treatment there as an adult. I did all of this entirely in secret. People had commented on my weight loss and there were some concerned faces, but nobody ever asked me and I never told. I was deeply ashamed of how much control I had lost.
While I was waiting for my assessment, which took months to happen, I made a pact with myself. I would try as hard as I could to make progress on my own, so that I had a good base to start from once I saw them – I wanted to prove how motivated to recover I was. Unfortunately I developed some other negative behaviours as a result of this and it turned out to be significantly to my detriment, as when I got myself to my assessment I was no longer underweight. Which meant I no longer fit neatly into that little ‘anorexic’ treatment box. I was offered a group to attend at a set time once a week (“you’ve already been here twice before”) which was impossible. I was on placement. I was due to be starting my first nursing post. I could not, and would not, let this take over my life again.
I was discharged for ‘disengaging from the service’ because I declined the group and asked for an alternative, which I was told I could not have. The therapist in my assessment told me “you have a choice about which direction to go here”. That pissed me off to be honest – I felt like I was way past ‘choices’ at that point. That’s why I was there. But that was the position I found myself in, so I made the ‘choice’ that felt right. I carried on trying to do it alone.
Over the last two years, I have done what is expected of me. I’ve roughly maintained my weight – I have been below my set point but I have also been just about ‘healthy’.
My metabolism has been damaged through years of erratic eating, and I’ve been maintaining my weight on a much lower amount of sustenance than is considered safe. But I’ve been getting by. My life is still controlled by eating ‘rules’: I can only eat certain things at certain times. I have a calorie limit. I feel like I am permanently running on empty. But I’m just about ‘healthy’ – right? I did regain that weight. I’ve spent the last two years maintaining at a barely healthy and unnatural weight for my body, living by shit rules and eating shit foods. I want change. I don’t want to be like this anymore.
If you’re not a regular reader of mine I’ll give you a brief update. Last September, I got manic. I fell back under the CMHT and had a course of integrative therapy, which was very helpful but left me with one conclusion. I needed help with my eating if my life was going to truly change for the better, and they couldn’t offer me that service.
So again I sloped back off asking for another referral. My fourth adult ED referral. I feel ashamed to say that – like a failure. Four referrals in 9 years, and that doesn’t even include CAMHS. I remember the first time I went there for my very first assessment. I looked around the waiting room seeing women there in their 30s and 40s, thinking determinedly: “that is not going to be me.” Yet here I am. 29. 9 years after that first assessment, and honestly not in a dissimilar position. My weight is higher now. But my mind feels exactly the same.
I feel that over the last couple of years, although I’ve been honest about not being fully recovered, I’ve not been entirely upfront about how far away from it I am, and I’m sorry for that. I am forever championing people’s recovery journey and I do believe full recovery is possible.
But not for me.
I’ve been down this path too many times now. For 17 of my 29 years – bar that short time after treatment – I have either had an eating disorder or had disordered eating. And I’m tired. I’m tired of this. In 17 years I have made what feels like, to me, absolutely zero progress. My life has moved on in many ways, but in this way has stayed exactly the same. What use is it having a healthier body if I am still tortured by the same thoughts?
Today I found out my referral had been declined, and I was heartbroken. They told me the treatment I was offered last time for OSFED is no longer available, and that my BMI means that I cannot be diagnosed with anorexia, nor do my behaviours meet any of the criteria for bulimia. The letter says that these are the only two conditions they will treat, and as I fit in neither box, I cannot be treated. All this does is fuel this illness more, because all I can think now is that I am ‘too fat’ for treatment. I told them my symptoms are different to when I went two years and they said I need to go back and discuss that with my GP. They’ve never declined me before and surely they must understand, based on my history with them and in CAMHS, how wrong things can go? I’ve been back to the GP today. I’ve asked for a new referral as I don’t feel that the first one was clear enough about what I am struggling with. I am fighting for myself and my health with everything I’ve got, but honestly, I’m exhausted. I’m tired of this. Why must services sit by and watch us get worse when all evidence suggests early intervention is vital? Why must I beg for help and be turned away, knowing that the only way I will then get that help is by getting sicker? I don’t want to get sicker, I want to get better, and I feel like I’m hitting barrier after barrier.
I feel incredibly let down by the service, and I honestly don’t know where to go from here. If they turn it down a second time, I truly don’t know what to do. I can’t go back again, they’ll have made their message perfectly clear by that point. Private therapy isn’t something I can afford, and the fear of paying money into something that may be unsuccessful is very real.
I don’t know how long I will now wait to hear if they will offer me an assessment this time. Once I had to wait a week, another time a month. So I wait with baited breath to find out my fate.
I want this. I want recovery. I want to be the person I was four years ago who could eat ice cream on the beach without a second thought, or could pick pasta for dinner without suffocating in guilt afterwards. I don’t want to have to measure my food or calorie count or torture myself for eating something that my brain tells me I’m not allowed to. I can be that person again, I know I can, but I can’t do it by myself.
Eating disorders thrive off secrecy, and for my whole life I have been incredibly private about mine. I am okay talking when I am depressed or manic, but to actively say I now have an eating disorder again (whether it fits into a specific category or not), feels terrifying. I feel vulnerable and exposed. But the way to fight something that makes you keep secrets is to not keep those secrets anymore. And I shouldn’t be ashamed to be in this position again. I also didn’t want to tell anybody because I don’t want to be treated any differently, and I don’t want people to focus on my body or watch what I’m eating or stop inviting me out to dinner. I don’t want that.
I’m sorry if by writing this I have let any of you down, I realise that there are some of you who have followed my journey and found hope for yourselves, and I desperately don’t want to shatter that. Please know that regardless of this, there are others out there who can and have achieved a full and complete recovery, and that it is possible.
So, if you’ve made it this far, thank you for reading my rambles. There is absolutely nothing wrong with admitting you are struggling, and although I may have let some people down with this relapse, I’m hoping I will have made others feel better by talking about it.
Recovery isn’t linear, we all know this to be true. I will give you updates as this next steps in mine become clear.