A Confession From Me

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.

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How it feels to experience a relapse in eating disorder / anorexia recovery

33 comments

  1. Cara, it’s been a while, I have a few of your blogs to catch up on, I’m glad you feel comfortable enough to blog about this subject my dear friend.

    Firstly you haven’t let anyone down you push for others recoveries you are a great advocate, people love the advice you give and the hope you give to people is admirable.

    Secondly you’re not a failure if the system has failed you, it’s clear that you know you require help, you’ve asked enough times and the system has let you down.

    You’re such a light to so many people, hope you know how much love there is for you out here, you’re an amazing woman, an amazing inspiration and I can’t tell you how much I care for you!!!

    Love, Light and Peace!!

    Always Clive

    🙏♥️♥️🙏♥️♥️🙏

    Liked by 1 person

      • I wish the system wasn’t flawed, I only got the correct diagnosis and then the correct medication because I paid for private care, when they diagnosed me they found I have an allergy and I needed to see a dietician, I went to my GP he said he wouldn’t refer me so I pay privately for that now, I don’t want to bring a complaint against my GP surgery because they would likely strike me off of their books and make it hard for me to be seen by another GP.

        The problem is I’ve been suffering from these two conditions since birth but no one had a clue, I have had severe Asthma all my life as well, but since the diagnosis, the treatment and the diet change my Asthma is nearly nonexistent.

        I understand totally your frustration, I have a lot of love for you and I care so much for you, you’ve always helped me by sharing, although I haven’t told people I had a very bad relationship with food myself I was eating food that I was allergic to. Food that I shouldn’t have been eating because it was cheap crap but I wasn’t feeling I’ll when I ate it. I have a list of 37 foodstuffs that I can’t eat.

        I wish I could help you more than just chatting with you my friend 💖💖💖

        Liked by 1 person

  2. Hi Cara,
    Thank you for sharing your struggles, I understand how difficult this is. I’m a nurse too and I think it can be really difficult to let go of that and to be the patient. Asking for help is one of the hardest things to do and to then be turned away from the support you need is soul destroying.

    You are so brave and the strength it takes to keep fighting this every day is just exhausting. You have not let anyone down, if anything it validates how others of us feel too.
    Like you I believe that full recovery is possible for some people, but for others, things like co-occurring mental illnesses, past trauma and current life stresses just perpetuate the vicious eating disorder cycle.

    Unlike you I’m not brave, I read all your blogs and tweets but I never post or comment anything, not because I don’t want to but I just find it so difficult to be open and honest like you are for fear of being judged! Although the truth is no one would probably judge me as harshly as I do myself!

    Anyway sorry for the lengthy reply, but keep going lovely lady, you are a beautiful and amazing person who deserves the support you need, I am forever grateful for all your advocacy, take care of yourself xx

    Liked by 1 person

    • Thank you so much for this lovely message, I really appreciate it. And I think anybody who has these difficulties but keeps going is brave, regardless of whether they talk about it or not 💗

      Like

  3. Cara, you are truly one of the most wonderful, lovely and strong people I know, regardless of thoughts that say otherwise, I need you to know that.

    Please do not apologise, or feel like you have let anyone down, you certainly have not, you continue to, and always will, provide light and hope for others, not that you need to, but it is as though, it within you to do so and that doesn’t change.

    You also, do not need to confess, relapse has been a part of mine and many others recoveries, there is no shame in that. Of course, it doesn’t make it any easier, far from as I am sure you know.. but reminding ourselves, that Anorexia is an illness, it isn’t our fault and we can get through this, is important. Brighter days will come.

    Sending you love,

    xx

    Liked by 1 person

  4. Thank you Cara,
    I truly admire your frankness and transparency which,in my view ( not expert) shows a great sense of self awareness which is so important and positive in this day & age when there are so many ‘free’ statutory and non statutory Charletons (got that word from a friend & ex colleague yesterday) in relation to counselling & psychotherapy as I relayed THREE personal experiences over the last two weeks. We both came to the conclusion that I am my best EXPERT & to get on writing my memoir I have been promising to write for a long time.
    The blogging platform, if I manage it without getting overloaded also helps.
    Thanks so much & all the best ❤️🙏

    Liked by 1 person

  5. What a beautiful and heartbreaking post. I’m so sorry you’re going through this and having to navigate the decreasing opportunities for support. I really hope you get what you need. I’m thinking of you and sending you love, wishing there was more I could do xx

    Liked by 1 person

  6. You aren’t letting anyone down honey. You know this monster very well and by acknowledging it, you are relieving it of some of its power. You are incredibly strong even though you dont feel it, and we will always have your back even if the services may not. X

    Liked by 1 person

  7. very very well done for talking about it .people never see the every day effects.there views/judgements are very Snotty Nosed .i have great deal health issues ..me.Anorexic..migrains .ibs /list goes on .i take part in a lot lot research
    my blog.http;//mark-kent.webs.com
    twitter.supersnooper

    Liked by 1 person

  8. THIS!
    This is my biggest passion.
    I have been diagnosed with all eating disorders. I was sickest with OSFED. I was hospitalized multiple times with OSFED. OSFED is not simply a lesser version of anorexia or bulimia or even binge eating disorder. OSFED is its own diagnosis. People need to get this!
    I have so many posts about this. I’ll link them below…
    But soooo sorry you are being unseen and mistreated by professionals. It’s not fair!

    Liked by 1 person

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