Eating disorders & the treatment battle

The last week, there has been a lot of talk surrounding eating disorders and treatment in the blogs that I follow. Last week, when I took my letter to register with disability services at university for the year, my advisor read through the listed diagnoses. “Depression, insomnia, OCD, PTSD, EDNOS – how long have you had an eating disorder for?”. It’s a difficult question. Immediately I spit out “oh, I don’t have an eating disorder anymore. It must just still be listed on my file”. I don’t think of myself as having an eating disorder – god no. But taking a step back – thinking about my behaviours in terms of symptoms on a diagnostic check list… I suppose I do fill the criterion. It’s just so much easier to not think about.

Eating disorders are insidious. Despite having been weight restored for almost four years, I still sometimes feel the tantalising pull of my eating disorder. It’s not something that I feel is important – at least not at this point in time – there are bigger struggles to be fought.

It does scare me, however, how ingrained into my life this has become. There’s nothing strange or shocking to me about self induced vomiting, ingesting poisons to aid purging, going days without eating. My electrolytes are regularly tested as abnormal, my heart skips and starts and I shrug it off as nothing. Over the years I’ve watched perhaps fifteen – twenty friends that I’ve made, in and out of hospital, die to these diseases. The first few were devastating – and the lives lost are still tragic, of course, but it doesn’t terrify me to hear that another one of us has fallen, like it once did (like it should).

One in five is a huge mortality rate for any illness – and is shocking for a preventable, mental illness. The Butterfly Foundation also reports that those with anorexia nervosa are 32x more likely to suicide than their healthy counterparts. It’s a terrifying thought. With such devastating morbidity (almost one in four young women) and mortality rates, one would think that there would be effective national and international preventative campaigns, early intervention treatment, and widespread intensive specialised treatment for severe eating disorders.

But there’s not. I’m lucky enough to have private health insurance and access to eating disorder units in private hospitals – but not everyone is. I know without a doubt that without the hospitalisations and interventions I was exposed to from ages 13-19, I would be dead. Many times I showed up at the door of the emergency department of my local hospital, chest pains, aching head and shaking like a leaf – and they would give me a few hours on fluids and potassium, then discharge me. Without ongoing care in the private sector – I don’t doubt for a second that I would have been one of those girls who dies suddenly – her heart stopping in her sleep.

Recently, one of my friends was admitted to a public hospital over a weekend and discharged on Monday on the grounds of not being sick enough – despite plummeting blood sugar and fainting on her way out of the unit. You can read more about her story here – but what I really want to share with you is the petition that she has created regarding eating disorder services in our state. Despite the growing prevalence of eating disorders, we have two acute inpatient beds dedicated to eating disorders, statewide. It’s simply not good enough. To get one of these beds – which are usually reserved for severe anorexia (despite it not being the only eating disorder – which is a thought for a whole other post) – being on your death bed is practically a requirement. Lives are being lost because there isn’t enough available treatment, and they don’t need to be. Please sign, and share, and talk about this.

I remember being told in one of my first hospitalisations for anorexia nervosa that out of each five people with the illness – one would die, one would recover, and three would live with an eating disorder – in whatever shape or form, for the rest of their lives. To be entirely honest I don’t see the eating disorder voice ever leaving my head – it planted itself early and it has dictated so much of my self development. I have learnt to live with it, though – I can eat relatively well and maintain my weight , coax food into my mouth despite my head’s protests against me. Yes, I know people who have fully recovered. But they are definitely the minority. But it’s a terrifying thought that I know of more people who have died as a result of their eating disorder than I do people who have fully recovered, and maintained that recovery.

It scares me that even this level of ‘recovery’ is not available to everyone. It’s taken years of intensive therapy and many hospitalisations to get me to this level of medical and psychological stability. It shouldn’t be a challenge to reach a vague semblance of recovery. Eating disorders are incredibly difficult and exhausting to fight – and those suffering shouldn’t have to fight not only for their body and their lives, but their treatment as well. An eating disorder is already living a war inside one’s head. It’s not fair, and it’s not okay. While I am absolutely aware of how lucky I am to live the life that I do in the world that I do, it scares me to think that in terms of treatment – despite how inconsistent, often useless and varied mine has been – I am one of the lucky ones.

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12 thoughts on “Eating disorders & the treatment battle

  1. The fact you’re moving in the direction of recovery tells me you can continue to do so, and i hope you do. Maybe the voice will never leave entirely, but hopefully it can become less and less.

    • G says:

      Thankyou – I hope so too. I absolutely believe that recovery is possible, don’t get me wrong. But it’s a difficult journey and is made much more practical with adequate, effective treatment.

      I don’t think I’ve met you before – so hi 🙂

      • Hey! 🙂 i was one of the ones who didn’t get in too terribly far over my head when it comes to an ED, but yeah, good treatment is hard to find, hard to afford, and is not available to most.. But for me, it’s been the only way to avoid the hell of a really serious problem.

      • G says:

        That’s good to hear that you didn’t get too far in 🙂 Eating disorders have a tendency to just suck you in completely though – so be careful. It just makes no sense to me that a disease which is so widespread and damaging doesn’t get the same treatment programs and availability as it’s non mental-illness counterparts.

      • For sure. it’s an ongoing issue, that’s for sure. gotta beat the crappy voice down everyday… use all the good stuff you’ve been given…

  2. I am doing this for school and i really need to know what kind of treatment of medical help can people get for eating disorders. So if you would be kind enough to help me out, that would be nice. Thank you.

    • G says:

      Eating disorders can lead to a huge range of medical difficulties – all with their own treatments. I can’t give you any definitely correct answers in terms of what are statistically the most frequent presenting medical problems, or what treatments are most often prescribed, but I can share my experiences with you. Medically, some of the consequences I experienced (and continue to experience) as a result of my eating disorder are electrolyte imbalances, osteopenia, arrythmia, postural hypotension & low blood pressure, ketosis and anemia. Most have been able to be treated with vitamin supplements, but I’ve also had many potassium IVS & fluid IVs. The arrythmia and blood pressure issues are treated with medications. If you’re interested in what psychological help is available and effective in eating disorder treatment, check out the treatment options listed here.

  3. Scarlett says:

    This post is so thoughtful and well-written–thank you for sharing! Working toward recovery/remission/symptom management is definitely an ongoing process for most of us.

    I respect you for coming as far as you have. Keep fighting!

    • G says:

      Absolutely – it’s tiring and frustrating that it’s such a long (potentially neverending) process, but it’s definitely worth it.

      Thanks for reading 🙂

  4. mundanebrain says:

    I live on the other end of the world, but it keeps amazing me how bad EDtreatment (possibilities) are everywhere. IF there’s any, it’ll be waitinglists from months up to a year – time most patients don’t have when they’ve finally decided to take the step to seek for help. The systems are so, so off.
    I signed Ella’s petition, thanks for sharing it

  5. mundanebrain says:

    (Sorry if this comes in double, my computer failed..)

    Even though I live on the other end of the world, it keeps amazing me how off the systems really are. EVERYWHERE! IF there’s any (accessible) treatment available, it will mean waiting lists from months up to a year – Time most patients don’t have when they’ve finally dare take the step to reach out for help. These are accute situations, not something you putt off with a ‘just eat some extra pizza until you can get a bed’-kinda nonsense!

    I signed Ella’s petition, thanks for sharing it.

    • G says:

      It’s strange, hey. Eating disorders are such a widespread problem yet the treatment is nowhere near where it should be.

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