Wednesday 13 June 2018

Not Skinny Enough... For Eating Disorder Treatment

 It's been a while. I'll get into why in a later post, but for now I need to get this off my chest. I will be talking about Eating Disorders and Mental Health. It will be very angry, very sweary and very raw; so if you don't feel up to reading about these topics then that's totally okay, I understand 💙 

 I had a phone call from my CPN today, I've not seen her in a while because I've barely left Heaton in the past six weeks. Other than Download Festival - a break I desperately needed - the furthest I've been from home is to see my parents. My CPN is based in Gateshead and is in the process of switching me over to the Newcastle team for the rest of my treatment; Gateshead are frantically trying to reduce their case and patient loads, my guess being because of budget cuts and staff shortages, and Newcastle have better resources for helping patients with Eating Disorders. It sounded like a sweet deal, closer to home and more specialised treatment than just DBT, and they had no waiting lists so I could be transferred straight over. However that phone call shattered any illusions I had about finally getting back into recovery.

 I don't blame my CPN, she was trying to get me more specialised treatment closer to home - exactly what NICE guidelines specify as key criteria for successful recovery - and even now she's writing letters and making more calls to try and change their minds, I'm very grateful for her. I have lived with an Eating Disorder in some form or another since I was 14, beginning after I was sexually assaulted; at some point over the years the bulimia developed into anorexia, though the binging and purging still like to rear their ugly heads from time to time. I consume on average 700-800 calories per day. I have a BMI of 15.8 (though BMI is bullshit criteria anyway). I've lost over 10kg since the beginning of 2018. I have collapsed in public due to sheer exhaustion. My thoughts are clouded, my brain is foggy and my periods have virtually stopped. But according to Newcastle's Mental Health team? I'm "not underweight enough" to receive treatment.

 They always say that asking for help is the hardest step to make when you're trying to recover. I asked for help in 2015, I saw my GP in Gateshead, got onto the waiting list for a psychiatric evaluation and four months later was diagnosed with a personality disorder - because nothing makes you feel more fucked up than being told it's your personality that's the problem. They never explored this, never worked on giving me anything more specific, just sort of went from there and offered me different types of treatment, from one-to-one talking therapy, mindfulness exercises, more DBT - including group therapy. Apparently this was part of the problem for Newcastle, as it wasn't until later into my treatment with Gateshead that I was recognised as having an Eating Disorder, they didn't see it as a long-term problem because of the late diagnosis. 

 They also said I seem "unwilling to accept treatment" too, based on the fact that I dropped out of the DBT group therapy after a few sessions, and refused an appointment with a dietitian. There are glaring issues with this. Firstly, the DBT group was ran by the most patronising woman I have met in my life; she would show me up for asking questions if I didn't understand something - in one session taking the time to say "and for Lizi's benefit, this means..." every time she explained a new topic. How fucking unprofessional is that? Of course I wouldn't want to keep going back if that's what they're offering me as 'treatment'. I didn't realise public humiliation was part of DBT! Also, what fucking genius thought that putting somebody with crippling social anxiety into group therapy with a bunch of strangers would work out? I don't care how many times you claim it's a Safe bastarding Space, I was treated better by drunken perverts when I was doing bar work.

 Secondly, and this is the kicker, what the fuck is a fucking Dietitian going to do for me*? I refused the appointment because believe it or not I know what sort of things I need to be eating to keep my weight up, I know exactly how many meals, how much, what macro and micronutrients I need to be putting in my face to maintain a healthy body. The issue is that I can't. I just fucking can't. The last time I checked, having a piece of paper that says "I'm a food doctor, I know what you need to be eating" doesn't also come with a bonus Magic fucking Wand that will suddenly make me able to eat without wanting to a) throw it all up again or b) tear off my skin because I feel so fucking afraid and disgusting every time I put food in my mouth. I didn't take that appointment because I know exactly what sort of strain the NHS and Mental Health services are under and there are thousands of other people who need that appointment more desperately than I do. 

*note - no offence to any dietitians out there, and you probably do a lot more than tell people what to eat but that's how your job was explained to me and (as you've probably gathered) I'm a stubborn cunt. Just let me be angry for now - or lend me that Magic Wand.


 So that puts me in an awkward position. Either I go back to the start of the queue, wait however long it takes to be seen for an assessment by the Newcastle team, probably involving going through all the bullshit of talking therapies and CBT again - where I was at five years ago - and hope and pray to whatever deity I don't believe in that I'll be able to get help not only for my Eating Disorder but for other aspects of my mental health. Oh yeah, according to Newcastle I seem to be "doing okay/managing" in other aspects of my mental health so I'm not considered at risk or in need of treatment. They totally ignored my CPN telling them about me being sexually assaulted the other month, and that she also believes that my specific personality disorder is BPD. In the words of my friend Annie (total babe) you wouldn't treat any other illness like this, you wouldn't say to a diabetic "okay so we know you're diabetic, but you haven't slipped into a coma recently so we should just wait and see how it goes!". And Eating Disorders aren't just Mental Health conditions, they affect your physical health too. Gateshead services made sure that I had regular physical health checks, everything from my weight, blood pressure, blood tests, ECGs (heart monitory things), how my ED has affected my asthma. I'm not a doctor and I don't have X-ray vision so I can't see the physical harm I'm doing to myself without their help; and as the saying goes it's "out of sight, out of mind" for me. If I'm not monitored then I can easily go straight back to indulging the voices in my head and continue losing weight without knowing what harm I'm doing. 

 That brings me to option number two. As above, I can continue losing weight in a bid to pull myself out of this miserable 10 year slog in an attempt to actually get treatment - or die trying. I'm far from the only person living with an ED who will have considered this as a viable option, in fact I know I'm not - you can read the reality of this trend for yourself. I say trend, it's more of our last resort in some ways.

 I fucking love the NHS. I wouldn't be alive without the bloody thing, for more reasons than I can list without making this longer than it already is. But it makes me sick to my stomach knowing that we have a government that has made so many funding cuts, putting so many lives at risk, that we now have a system only able to treat ailments when they become life-threatening. Treating the symptoms rather than the cause. 

Current Self:
Slightly sunburned, back from holiday,
trying to hold myself together.
 I'm feeling a lot of different things right now and hopeful isn't one of them. Current ED treatment plans seem more like they're treating the symptoms rather than the cause. It vaguely reminds me of the Cat and Mouse system used when the Suffragettes were imprisoned: let them starve, recuperate at home, then haul them back inside once they start being a problem again and force-feed them as the eventual solution; kicking them out again and starting the cycle over again. Without front line services in place, free at the point of use from the NHS, then how can we expect people to recover as well as they can from disordered eating? We can't, plain and simple. So in the spirit of 2018, if we really want to mark the centenary of the Women's Suffrage Movement, then we need to stop using the same methods to treat people living with and suffering with Eating Disorders.



To sort this whole shit-storm out in a productive way, I'm going to my GP in the morning, and hoping this is all a ridiculous miscommunication. I won't be wallowing in this and doing nothing about it. Either way I'll be making something of this anger, even if it's just sharing my experience to add to the list of reasons we need to improve the NHS and stop cutting its fucking budget. Seriously, how can you class anything as overspending if it's being put into a service that literally can stop people from dying?