It Is Just Not Good Enough.

I hoped to avoid writing much more than a short acknowledgement of the tragic events in the past few days. I am heartbroken, both for my own reasons, and more, for everyone touched by these senseless, horrible events. But nothing I could possibly say could help anyone, change anything. Not only that, but I’m half a world away, in a country that has a totally different attitude to gun control, and it’s an argument that I can’t take part in right now since I am not well enough informed of any of the facts and circumstances.

However, I do feel. Just like every other human being. And hearing about killing after killing, I cannot fathom why tighter gun controls are not put in place. I’ve heard all the ‘guns don’t kill, people kill’ and ‘take away the guns and the baddies will still get them and then we will be unable to protect  ourselves’ arguments. I don’t agree with either of those – it seems more often that the good people’s weapons are taken and used by bad people, or involved in accidents. And people kill people, yes, but why would you want to hand them an easy way to do it if the impulse strikes them?

Those kids.. they were just little innocent kids. I cannot even begin to understand how anyone, ever, could even consider killing a kid. A kid, let alone  so many. So many precious, innocent lives. Potential lost. So many families destroyed. So much trauma for the survivors. And trauma ruins lives, for years after it happens.

This brings me to mental health. There have been a lot of people saying that this is yet another sign that we need better mental health care – better access to it in the first place, better standard of care and follow up, just better, better, better across the board.

Or even ADEQUATE would be a good start.

It is truly horrifying that in our first world countries, it is easier to get a gun than it is to get help for your mental illness. It is easier to kill yourself or someone else, than it is to get even basic treatment, understanding, and a sense of hope. It is easier to end it all, taking a few out with you, than it is to continue to receive adequate care and support for the full time that it takes you to recover and rejoin life.

It sucks that when something like this happen, a lot of people think that most people who have a mental illness do things like this, are dangerous, are downright evil or stuffed up enough to do something like this. That’s not true. There are sick people, and then there are bad people. You can be both, but being sick does NOT mean you are automatically bad too.  I think people who perpetrate horrors like this are sick AND bad. It is far from the norm for people with mental illnesses to be violent or dangerous. But we are tainted with the same brush as the bad eggs, and acceptance among mainstream society takes another dive.

The stigma surrounding mental illness is still alive and well, today. People feel they cannot tell their friends, their families, because they will be ostracised. They cannot let their employers or colleagues know or they will lose their jobs or at least lose respect in the workplace. And they feel the brunt of having a ‘lesser’ illness daily. Mental illness causes unbearable distress, disability and death. And yet people who have them are treated like it’s a personal failing (which it is not)  rather than a genuine illness that they never asked to have (which it is).

Because my biggest problem is the eating disorder, I will talk more about that now, but the problems with getting help and understanding are across the board with mental health care.

If someone has cancer, everything is done to try and get them into treatment for it as soon as possible. And everyone recognises that they are sick. No way would they be told “You are not sick enough yet, come back when your cancer has spread to some organs or to X percent of your body.” You wouldn’t be told “If you just wanted to not have cancer, you would not have cancer. Put a smile on your face!” or “Just do it!”.

 

You wouldn’t be treated like a criminal by your treatment team. You wouldn’t have an inpatient experience that is akin to being jailed.  Sure the nature of eating disorders can make us dishonest and sneaky – mostly with ourselves – but that’s the illness, not us. It’s what we need their help to treat – not derision or punishment. If we need restraint and supervision, it is very possible to do this with kindness and retaining the patient’s dignity – and yet often the treating people do not seem to think these little yet essential things are worth consideration. Have they not realised that their treatment of people this way not only hinders their recovery chances, but if they just put some kindness and the willingness to try and understand into it, they would get better results all around? And how is punishment such as not allowing someone to see their loved ones, taking away their possessions and clothes, and forbidding them to engage in activities they enjoy helping them? Short answer – it’s NOT.

If someone has cancer, they will not be told they are incurable and left to die unless they really are. And even then, they will be offered comfort measures and support. But with an eating disorder, many are told they are ‘hopeless cases’ as if it was their fault, and, apart from when they are at death’s door, left to just survive in the community. They deteriorate physically and mentally and they lose hope. They exist in a living hell – unable to live, but not allowed either to die, just in limbo.

I have heard of people in other countries being unable to get into or kicked out of treatment centres because their insurance companies would not pay. I have heard of people who have travelled thousands of kilometres and mortgaged everything in order to just have a chance to survive. And I have countless friends who have died, and heard of countless others who also have died.

It’s just NOT GOOD ENOUGH.

There are a heck of a lot of problems in this world that come back to mental illness, and a heck of a lot of people in pain. We cannot just ignore mental illness and hope it goes away. Doesn’t happen. Never will.

How many more innocent people have to die, how many little kids? All for the want of adequate care, understanding, and treatment.

So where do we start? What do you think would be a good starting point? 

Have you struggled to get help? 

(Image sources  1, 2, 3)

Should Mentally Ill People Get To Say Don’t Help Me?

I’ve been discussing this issue with a few people lately, it has come up in the past for myself when I’ve been most unwell. There were times when I begged the people who were treating me to just let me die, because I had tried again and again, fought my hardest, and truly had nothing left to give. I just wanted to be left alone, to be allowed to have some measure of comfort rather than invasive and traumatic treatment.

I felt like they were flogging a dead horse. I really did. And the dead horse was me.

Other reasons this debate has come up include my own being given the chance to sign an advanced health care directive and contribute to my emergency admission plans, and the recent cases in the news of women with Anorexia who have either been court ordered to be fed against their will,  or not fed despite it meaning they would die. (Basically one of the women was given the right to allow her disorder to kill her, and the other was not.)

There are so many grey issues here. How do you decide when someone has crossed that line between their mental illness being treatable, and being ‘terminal’? (Currently I think that in Australia and many countries, it’s illegal to commit suicide, so it’s only when someone is actually terminal that they are allowed to opt for comfort measures over actual treatment). In cases like anorexia or bulimia, I’m sure there would be an actual point where someone was terminally ill – for example if their organs failed, or if they were brain damaged as Terry Schiavo was after a cardiac arrest starved her brain of oxygen. (Terry had bulimia.)

But it’s not so clear cut in every case. Mental illnesses are just that – illnesses of our minds. When someone is ‘terminal’ physically from an eating disorder, it’s due to what the mental illness has put them through. It goes without saying though, that the severity of someone’s mental illness isn’t always echoed by the severity of the physical consequences. I am absolutely sure that the mental anguish that many of us with mental illnesses suffer can go beyond a point where it’s more cruel to force them to live. I have spoken to people who have schizophrenia and are non-compliant with having to take their medications who have told me that the effects of their medication are far worse than just living with the illness, and that they would rather die, or rather be sick and have a non-life than take it. But they don’t have a choice. (Please note, this is not the same for everyone with Schizophrenia just as no other mental illness affects everyone the same way. Someone else might find living with Schizophrenia far too distressing and prefer to at least live with medication side effects and have a chance of a functional life, and other people might not even have the same side effects or to the same degree from the medications.)

The laws vary of course, from place to place. Here where I live, in my state in Australia, you can be placed on an Involuntary Treatment Order (ITO) , which means that you can be given treatment against your will. The criteria to be put on an ITO are:

•  the person has a mental illness
• the person’s illness requires immediate treatment
•  the proposed treatment is available at an authorised mental health service
• because of the person’s illness:  there is an imminent risk that the person may cause harm to himself or herself or someone else, or the person is likely to suffer serious mental or physical deterioration
• there is no less restrictive way of ensuring the person receives appropriate treatment for the illness, and the person:  lacks the capacity to consent to be treated for the illness, or has unreasonably refused proposed treatment for the illness. (source) (emphasis mine)

The causing of harm to oneself or to others is probably the biggest factor that gets people put on an ITO – so if someone is suicidal and likely to kill themselves or try, or they are starving to a point of medical danger, or bingeing and purging so much their electrolytes are all over the place, and you refuse treatment or hospitalisation, they’ll ITO you. If you are raving psychotic and hitting out at people or doing something like that, they’ll ITO you. (People with mental illness can become violent, however it’s no more prevalent than with the rest of society. That people who are mentally ill are dangerous is another of those big fat MYTHS that perpetuate stereotypes and get people killed.)

“This is Roni Levi, who was surrounded and shot fatally by police officers -after having a psychotic breakdown at Bondi beach.
His only weapon was a kitchen knife -which he would have had difficulty in using as his clothing was in a dishevelled state with his coat half off -as this picture shows.”

 

I was under an ITO for over 10 years, almost continuously. It was this that allowed the staff at the hospital to force feed me, restrain me, keep me detained, all against my will. And most importantly – keep me alive, despite my begging them to just let me die. Today, even two of my case managers during that time have expressed that they were not, and still are not sure that it was the right thing to do, given the distress I was in and the cruelty of the methods used, but even more the fact that I wasn’t expected to live and there was little hope for me. It did seem especially cruel. For me, it was a living hell that was far worse than the hell of the actual eating disorder, and triggered a lot of abuse stuff for me as well. All to just get me to a point where it was inevitable that I would again end up in the same position, because I was discharged at such a low weight and no actual help for any of the problems behind my behaviours. I truly didn’t have a chance once I became that ill. And for most of those years, I never was NOT that ill.

Today, I have a very different perspective on life. I am glad that I’m alive, most of the time. Living with my eating disorder and the PTSD issues and depression – that’s still hell. But I’m glad I’m alive, because there are so many things that make the bad times worth getting through. Also, being alive means I have a chance of making it. I have a chance of dealing with the issues behind it all and working towards some sort of life, peace, and dare I say it – happiness. If they had allowed me to die, I wouldn’t have those chances. I wouldn’t be here now at all. I couldn’t see that let alone believe in that, back then.

So at what point does someone with a mental illness, or more specifically, an eating disorder, become ‘hopeless’ or ‘terminal’? There are many of us whom the system has given up on us – will not work with us or takes basic measures to keep us alive but not ‘bother’ with anything further. But that doesn’t necessarily mean we don’t have a chance – it more means that the level of frustration of those helping us reached a point where they were no longer willing to ‘waste their time’ on us, when in reality they were wasting their time on trying things that had been proven not to help us rather than wasting it on US specifically.

With someone who doesn’t have an eating disorder but another mental illness that doesn’t actually affect their medical health – how do you even begin to decide where to draw the line with them? I have heard that in Australia it’s becoming accepted for people to have advanced health directives drawn up during their more well times (so legally binding) that specify wishes like no Electroconvulsive Therapy (ECT),  which is often given against the patient’s will when they are on an ITO, for example. But to allow someone to refuse treatment altogether – what about when that directly risks their life if they are suicidal? In the case of a terminal eating disorder, at least the death would come from physical complications. Suicide is an entirely different matter, and it’s also illegal in Australia, as is assisted suicide. (This is a whole separate matter in it’s own right to get into and debate!)

Further, when should anyone’s right to do what they please to their own body be taken away from them? I hate pro-eating disorder communities, and I hate that there are people out there who actually want to have something that’s caused myself and friends so much distress and even killed some of them. But I’m sure the people involved would argue that it’s their body, so they should be able to do what they pleased to it. At what point does self starvation, bingeing, purging, self harm etc  become any worse than possibly life-threatening extreme sports, for example? Personally, I know that while extreme sports would most likely be classed as ‘thrill seeking’, I’m pretty confident that there is little to no thrill in the mental illness produced dangerous behaviour, and that it’s mostly born from desperation and pain and sickness. But still, when do we take someone’s right to choose when to accept help for that sickness away from them and force help onto them?

Personally I don’t think anyone should ever be given up on, but I do think that everyone deserves to have their basic rights respected, mental illness or not. I believe that it needs to be judged on a case-by-case basis and that every endeavour should be made to honour the patient’s wishes.

I also agree with Laura Collins that if someone gets to the point where their eating disorder is terminal, the system has failed them, because the inability to nourish oneself whether through starvation, purging, or whatever is part of the actual illness and needs to be treated, not allowed to take over.

Carrie Fisher makes another point that I fully believe - patients shouldn’t be denied help through ‘non-compliance’. (It’s common to hear of patients being kicked out of treatment programs for this reason.) What is non-compliance but another symptom of the illness? Of course people with anorexia and bulimia are not going to want to gain weight or are going to struggle eating or keeping it down or not exercising. They have an eating disorder. What do they expect? Sheesh.

Basically to me, that means that if people with an eating disorder get the treatment they need and deserve, they will not reach the point of terminal – and that is the way it should be.  Likewise with any mental illness – these are not new conditions! We do have ways of at least helping lessen people’s pain and distress. Adequate support and respect also go a long way to making things that much less awful. NOBODY  should die from a mental illness, particularly in this day and age.

I guess that answers the question for me, sort of anyway – everyone has a right to make basic decisions about their life and their bodies, but if someone with a mental illness gets to the point where they are basically begging to choose to die or go untreated, we need to examine just how we have NOT been helping them adequately.

What do you think? I hope this made sense!

Further reading – I discovered a really interesting page that doesn’t just concentrate on Terri Schiavo’s case, but many issues regarding choice and control over end of life/health http://www.terrisfight.org/

Laura Collin’s blog Are You Eating With Your Anorexic

Carrie Fisher’s blog ED Bites

(Image sources :  1 (adapted),  2, 3, 4)

If You Could Have A Say…

For almost 15 years, I had no say about when I was admitted to hospital, or what happened if I needed to be admitted. I had no say in any decisions to do with my health.

Recently, I’ve been offered a little bit of that power – an opportunity that I think many of us who are fighting eating disorders and caught up in the health system would give anything to have.

As I am a ‘complex patient’, my case manager is now required to have plans drawn up for every aspect of my management. Usually my admissions have been planned – I’ve been becoming too unwell, or medically I’ve become unstable, my case manager and/or GP has contacted the ED specialist unit at the hospital, and because they know me, it’s pretty much been a case of “Okay, she’s coming in at x time, see you then.” All that’s remained has been for them to bring me in.

However there have been emergencies and crises, as there will be when someone is battling a long chronic illness that has so many volatile aspects to it.  And without a written plan in my files, they have been difficult and even traumatic. There was the time I was taken to hospital by a case worker who was standing in, for chest pains. The registrar didn’t check me out – instead, he gave me a few lectures about how people with eating disorders are manipulative, spoilt brats who just want attention – and told me to go home and eat a sandwich. I really did have heart problems – ended up in hospital with them a few days later – but that experience is just one of many similar, not just for myself, but for friends I’ve talked to.

It’s scary that many of us will not go to emergency under our own steam, because of the fear of being treated with no understanding, even being accused of attention seeking or malingering. Often staff in emergency aren’t aware of what to actually test for medically – beyond basics like electrolyte levels, and even that at times has been something that if I haven’t reminded them of, would have been overlooked. One of my friends who had to attend for her self harm was stitched up with no anesthetic, because obviously, she wanted the pain, right? (No, she didn’t, and it traumatised her.)

So having a chance to control some of what happens in this situation is truly an opportunity I don’t want to waste. It also might go to abate some of the fears I have of ever being in hospital again – that I will always be at the mercy of others, never have a say, just be reduced to a body, because I have a mental illness and therefore I don’t get a say.

As far as my health goes, my case manager is going to help me take out an Advanced Health Care Directive. It’s a good idea to have it done now, and have it signed off by a doctor to say that I was mentally able to make my own informed decisions at the time that it was made. When I’ve been in hospital, there has often been a point at which things have been too much – too traumatic or too painful – and I’ve wanted to be able to say “No more”. Indeed, I’ve begged them at times to let me die – because at that time, there was truly not much hope, I had tried everything and tried it many times. I was tired, I was broken, now medical help had just become more abuse – and I wanted them to just be kind to me now. But because I was mentally ill – I was told that I didn’t know what was best for me and was incapable of making those decisions.

Recently in the  news there have been two women who have been in this situation – and it went to court. One woman was granted the right to not be fed – (trigger warning, stupid cliché anorexia photo) despite wanting to live. The other was ordered to be fed against her will – despite there being no hope for her and suffering the medical and psychological effects of years of a long, hard battle. Today, I am glad that I was kept alive despite wanting then to just be allowed to die. Because I’m still here, and I have a chance. One of my past doctor always used to say to me “While there is life, there is hope.” And she’s right.

A now long gone friend of mine was resuscitated and her chest was smashed from the efforts, she lived in agony for a while before she died. That terrifies me, because I have severe osteoporosis so the chances are the same would happen to me. I do have heart complications, according to my case manager, so it could happen. I wanted to have a Do Not Resuscitate order at one stage, was knocked back because of the ‘mentally impaired’ thing. NOW, I can have it if I want it. But I’m scared of not being resuscitated, too. As much as I struggle to live, struggle to want to live when hurting and fighting 24/7, I’m scared of dying too. Who isn’t? The thought of having a heart attack and them NOT trying to save my life is too scary to think about.

I want to be able to decide when to no longer push to save me. When I’m to be considered ‘end of life’. That is also such a hard decision. When is anorexia ‘end of life’? Who gets to make that decision? Nobody with an eating disorder should ever get to that stage but it does happen. When you are in organ failure, for example, it’s a bit silly to try and keep saving you, especially if it’s painful and traumatic.

I definitely want to specify that I not be restrained ever again. That isn’t worth it, and I’d truly rather die. I don’t know if that would be acceptable on an AHD, but I can try.

Generally, I get to have instructions to emergency staff about what is helpful for me, and what is not. For example – not to say “Go eat a sandwich” to me! My case manager is putting in details of what medical things to test for (in case they don’t know, but seriously, I hope it becomes compulsory for all front line nurses, doctors, and any other professional health staff to be taught about eating disorders, since they are often the first point of contact for sufferers and how they handle the situation can heavily influence the sufferer’s attitude towards accepting help in the future.)

Very importantly, I can have instructions to care for Shalimar. I’ve always been scared that she would be left alone to fend for herself if I was suddenly unwell and none of my treatment team were around to arrange for her to be cared for. She is to me, my ‘child’ – and she is reliant on me in as many ways as a child.

I’m struggling to come up with what things I would like to have on my plan. I was shocked to be given the chance to have input, and thankful that I have a chance to influence what the future might hold, before I got to a point where my opinion no longer counted – NOT that I ever intend to revisit that state of health again. The most important thing here, is that this is a safety net for me in many ways.

What would you choose to have on an emergency admission care plan? For both medical and psychiatric emergencies? What would you want the people who are helping you to do or not do? Are there any triggers that you would benefit from the staff knowing in advance and so avoiding?

Would you ever take out an Advanced Health Care Directive or do you have one? And what would you have on that directive? What is your biggest fear health-wise?

Thank you for your input! I am so interested to see what you all think.

(Image source – I love this picture, and I love this verse.)

The Boy Who Loved Apples.

It takes a lot to reduce me to tears. And lately, I’ve been crying all over the place.

The culprit has been a book –  The Boy Who Loved Apples, by Amanda Webster.

This book is one mother’s story of her battle with anorexia – her young son Riche’s anorexia. It’s a reminder that eating disorders do not discriminate, and that they can overpower their victims lives incredibly fast and devastatingly so. And it’s the story of a mother and doctor who once believed all the usual myths about eating disorders and those who get them – until her own son became one of the hundreds of children – as young as 3 years old – who suffer from an eating disorder.

Amanda Webster trained as a doctor, and yet her knowledge and medical expertise were no match for her son’s illness. (Can you imagine just how helpless you would feel, being a doctor and still not able to help your child?) She did her best to give her kids the best childhood that she could – they wanted for nothing – and yet she still found herself engulfed in self blame and searching for what it was she had done ‘wrong’ to cause this. Her story reinforces that nobody is at fault for someone developing an eating disorder, and how wrong it is to automatically blame the parents or the family as a whole. Her son Riche is the last kid we would expect to care about his weight or willingly starve himself – fitting none of the common (highly inaccurate) expectations such as female, appearance obsessed, vain, a brat, etc. He was just 11 years old.

One of the most fascinating parts of this book is reading about the onset of Riche’s anorexia. Since Amanda is telling this story from her point of view, the reader gains a bit of insight into the onset of the illness and how it might be triggered. The first inkling that anything was really wrong, was Riche one day becoming inappropriately worried that he would contract the plague, because his dog had caught a rat and then licked him. This from a boy intelligent and gifted beyond his years, a virtual walking encyclopaedia of knowledge. Very soon after that – days or weeks – it seems that this had developed into OCD-like obsessions – with food, calories, and being ‘contaminated’ by them, and being ‘overweight’ and ‘fat’ being ‘bad’.

Riche’s illness meant that he would walk around an entire playing field so as not to have to step over an empty food wrapper on the ground. It meant he would not enter a room in which food might have been. He tried to strangle himself in a shopping centre lift because someone got in holding food. He would not drink even water – and then when he agreed to, nothing but bottled water with an unbroken seal. He exercised continuously, would not sit down, and washed his hands until they bled. He would not allow anyone close to him for fear of contamination – no hair cuts, no human contact, no HUGS. Not even from his pet dog, or his family. Remember, this is a child.  Completely isolated from anyone who might give him comfort.

It is frightening how fast Riche went from strong and healthy to dangerously ill from dehydration and starvation within a matter of just weeks. The deterioration physically of children with anorexia is often extremely rapid and  dangerous – as they are small to begin with. Amanda found herself fighting to keep Riche alive – and fighting just as huge a battle to keep her son from ending up imprisoned in a hospital, being force-fed, traumatised, and possibly doomed to become a chronic sufferer. As I myself have experienced the trauma of treatment that punishes the sufferer for being sick, I can understand her wanting to spare her son this torment.

Her search leads them to the Bronte Foundation, an offshoot of  the clinic in Melbourne started by a mother whose daughter received treatment at Peggy Claude-Pierre’s Montreaux Clinic in Canada.  (And hello, hello – this is me!!!   (hugging Bronte) ) (A follow up documentary, Beyond Bronte, was shot while we were clients there, Riche was also involved.)

I  met Amanda, Riche, and his brother Andy at the Bronte Foundation – the clinic that all of us were attending in 2002 and 2003. At the time, I knew pretty much nothing about their story – only what I saw – and I was very wrapped up in my own problems, too. I knew that it was a horrible time for them, but I had no idea just the extent of the hell they were all living then.

I became very close to Andy, a quiet and shy but brilliant (both brothers were extremely intelligent) kid who attended the day program despite not having anorexia – reading now how hard it was for him to live with his brother starving to death and his family having no time for him is really hard, and I’m touched that our friendship – which was precious to me – was actually special to him too, enough so that Amanda mentions it in her book.  I used to have epic conversations with Andy every day – we were both bookworms, at that time, I was heavily enjoying fantasy fiction and science fiction, and both of us had vivid imaginations – I’ve always cherished those afternoons talking about dinosaurs and outer space and every other thing you wouldn’t expect! I also had fun playing chess mostly with both boys. Both of them were masters at the game despite their age, and in Riche’s case, his proximity from the actual game he was part of. He wouldn’t sit down, and he couldn’t go near people, so he hovered halfway up a set of spiral steps nearby and called out his moves. He won every single time –  his recall and ability to picture the game in his mind must have been astounding – especially as he was in the grips of starvation at the time.

I’d always wondered what became of the boys – and was SO overjoyed to hear that they are now well and happy. I have heard that Riche is now studying at university, something scientific I believe.

The reason for my tears was both grief, knowing what they were about to go through, and joy, to know that Riche had not only survived but was doing well today. Also, so much was brought back from all those years ago. My own time at the clinic was both wonderful and awful – the paradox of trying to treat eating disorders was alive and well there – that what might work brilliantly for one person, could actually make things worse for another. All of us are so different and so there is no one treatment that works for all. The philosophy at the clinic was based on the Confirmed Negativity Condition theory that Peggy Claude-Pierre saw as being a constant in all sufferers. I do relate to CNC, but it could be called a thousand other things too – many of the traits are behaviours identified in CBT for example. They meant well, and a lot of clients went on to totally recover, but I was one of those who didn’t respond well, and perhaps I wasn’t ready at that point in time, to properly use their help. They also were not equipped to help with much beyond the actual ED – my trauma and abuse problems left them at a loss as to how to help me. But apart from this last two years, the 18 months I was a client there were the most ‘well’ of the whole 15 years of being constantly in and out of hospital. I was truly privileged to have the oppotunity to attend – I was the guest of a lady who bought the house for the clinic to set up in, after her daughter died from anorexia. I was one of her daughter’s friends and she insisted that I too, would go there. She was also the amazing, wonderful person who brought a little kitten into my life – Shalimar

I feel that The Boy Who Loved Apples is a valuable resource due to the insight it gives the reader into eating disorders and the battle it wages with the mind. It demonstrates that it’s not just adolescent girls who are appearance-obsessed who suffer, that it’s not necessarily anyone’s fault, and happy kids from happy families can get it. It illustrates how people with eating disorders face so many dead ends in their fight to just get help and that even medical professionals can be dangerously unfamiliar with them – something that can be fatal.

The best part about this book is that we know Riche has gotten better – completely. I’m really grateful to Amanda for sharing their story, and I wish them only the very best in everything. It’s also a reminder that people CAN get better from an eating disorder.

I highly recommend this book.

Have  you ever wondered where someone you met who was very unwell or struggling at that time ended up and how they are doing? Have you ever found out? 

(Image source)

Hospital – The Fishbowl. (Trigger Warning)

Following on from the introductory post on my experiences in hospital, I want to share where I spent most of my time.

 

(Image Source)

At the front of the ward is a locked section, well, a locked section within an already locked secure ward! This section has it’s own little common area with three single bedrooms, a seclusion room, shower and toilet. This area is where the most acutely ill patients are kept. Often they are extremely violent. This is where I ended up for many of my admissions, after earning myself a reputation of a serial absconder, and of being unmanageable due to  purging, exercising, hoarding food, self harming and overdoses, etc.

All this is enclosed by shatter proof, soundproof glass. It’s called the HDU (High Dependancy Unit) but I call it the Goldfish Bowl. Because you are on show to the whole world, every undignified played out soundlessly for the whole ward to see. And you can bang on the glass and yell for hours if you care to – nobody will take any notice of you. In there, you cease to be a human being. You become the worst of the worst, not even fit to mix with the rest of the patients in a psych ward.

Often these other patients are scary. They get loud and violent. They will come into your room. Sometimes the nurses will lock you in your own room to make sure you are safe. They are often psychotic, and will scream and rant and rage and throw the heavy foam furniture about like bits of paper. Because they are terminally short staffed, these patients cease to be dangerous at exactly 11pm each night, often before, and don’t become dangerous again until 7am the next morning. You are all locked up by yourselves for those hours – a very scary prospect for me, and strictly against rules but what can they do, three staff, often on their second and sometimes third consecutive shift, to look after 25 patients overnight – it’s impossible. For this reason, being constantly on Constant Obs in later years was a relief – it meant a staff member sat with me 24 hours a day and I felt safer in that way, at least, even though it wasn’t nice being constantly watched.

It was not a nice place to be. In there, you lose everything. The protocol is you can’t have any of your belongings, you wear hospital pyjamas only, to prevent hiding any weapons or having anything that can be used to hurt yourself in anyway.

You can’t have anything to help you pass the time. Books might be thrown, might be used to light a fire. Ditto writing paper. Pens and pencils are out. You can’t have anything to brush your hair or clean your teeth. You can’t use soap to wash your hands, and the water in the toilet is often turned off. It’s locked anyway. You can’t have a cup or water bottle of any kind, there is no tap to drink from anyway.

Your room is stripped bare except for your bed and you aren’t allowed many bedclothes in case they are used to hide things. There is always a nurse in there with you, and hourly you and your belongings are searched.

At meal times, you eat off polystyrene plates, off your lap. Food goes cold quickly, and just doesn’t taste good off polystyrene. You eat with a single soup spoon that’s carefully guarded. It’s messy, especially if it’s something needing to be cut. They tried plastic cutlery, but that’s too dangerous.

For an eating disorders patient, meals are already fraught. Once you get yourself locked up in the HDU, you will wish you were out there again, on table. Your meals will never arrive as they were ordered by the dietician leading to anxiety attacks and attacks from staff who think you somehow caused the wrong meal to come up, or accusations of being a nusicance because you asked for the correct meal because you are TRYING. And then, you will find yourself at meal and snack times, being forgotten, because your nurse has taken the rest of the ED patients to the table and again forgotten that one of hers is in the HDU. You will fight with yourself over whether to let it go – and chance being accused of not trying – or to remind them and be accused of being selfish, because everyone is busy. If you decide to remind them, the process with take at least half an hour, as nothing can be done without consultation from YOUR nurse who is now out of comission for at least the next hour and a half (meal and supervision afterwards) so this necessitates a lot of back and forth and negotiation and mostly a feeling of  ”why do I even bother”.

The toilet is locked, of course, as is the shower. If you want to go, you have to ask permission. This is a process that also takes a lot of time and getting permission from your always hard to find nurse. Then,  you’ll have the nurse watch you, with the door so wide open that the whole ward can often see you do your stuff. Because of how unwell the other patients are, it will often be smeared with stuff. The toilet itself is a stainless steel, seat-less, jail-issue thing that will always be filthy, even though the cleaner comes in several times a day.

You can’t keep this place clean, because the patients are just that unwell and have utterly zero cares about hygiene. In later years, it ceased to matter so much, because I was often restrained in my bed to stop me pulling out the picc line through which I was fed, and being spoon fed and  toileted there (also such a loss of dignity). I was so unable to cease my purging that I was, for months at a time over several admissions, purging from that restrained state – vomiting on myself, the bed and the floor, to the disgust of everyone, and I stank, my room stank. Life stank.

During the months I was locked in the HDU at a time, I felt I became less and less of anything at all. My life was reduced to bare white walls, nothing out the window but the bare walls of the next building and the sky, if you were lucky, I bit of the huge tree that was outside. (I stared at that tree constantly, as if I could somehow wish myself out of there and into it’s branches.)

I forgot what made Fiona who she was. Forgot what she liked, forgot what she didn’t like. Forgot what it was like to be passionate or have interests. Forgot that there was indeed a life beyond all this. More than forgot – stopped believing in it. And if this was what my life was, then I wasn’t interested in fighting for it. All I wanted was to be free from this prison – both the hospital prison, and the prison of my mind and body. When I was on restraints, I’d dissociate a lot, just to ‘not be there’. I began to believe that I’d never left, that I’d been there for one long, never ending period of time, and that the ‘world out there’ was actually just a dream that I kept waking up from.

I had to earn my way out of the HDU and back on the program and apart from the last two admissions when I offered to put on weight and voluntary went in – I never made it out. I would try my hardest, I’d even achieve every goal they set for me (they used to come out of ward rounds and say to me, “If you achieve x, y and z, we will take you out of the HDU onto the general ward.” I would MORE than achieve x, y and z, only to have them then say “you are doing SO WELL that we think it would be risky to shake anything up – we want to keep things just the same, so we are NOT going to let you out of the HDU at all. ” It happened every time and in the end I became so discouraged I didn’t care any more. Being in there just made me feel like a caged animal and confirmed to me that I wasn’t worthy as a human being. It was punishment and I felt I deserved it.

I fought them so hard. I always found it such a war in hospital, between me, the ED and them. I always hoped that just being in there would allow me to let go of the ED and work with them – but it was always a huge battle to get to that place. I’m not proud of the ways I found to sabotage myself, which led to me being locked in the HDU as a matter of the norm.. I wish that I was just able to let go and let them help me. But the ED  got angrier – like a savage beast prodded and poked, and life followed, leading to a classic catch 22 situation – they wanted me to act like a human being but treated me like a caged beast; I wanted to be treated like a human being but acted like the beast.

A huge part of my motivation when I was finally able to fight for myself was just to get out of there. I didn’t feel any different about myself, and I didn’t have any less of the ED screaming at me that I deserved to die. I just couldn’t bear it in that hell. It truly was, to me, like I had been jailed for comitting a crime, was being punished for already punishing myself. So I’d finally realise I couldn’t fight them – and just do it long enough to get the hell out of there as early as possible. As I was a long term patient, I never had any maitenance phrase. I would get to my weight, and bang, out the door same day. I’d hit the big wide world with still no idea or practice on how to keep myself safe and well. I’d also be manic, coming cold turkey off the sedatives they kept me quiet with, and overwhelmed because the world would hit me like the volume was suddenly turned up full bore after silence for so long. I look back and wish they’d actually made me slow down during those times and properly transition between complete imprisonment and the wide open world.

Just thinking of that place gives me the horrors. I never want to go back again. It’s good motivation to stay out (not that it helped me all those years I was in and out of there). I just wonder – if there was more understanding of eating disorders and the power they have over people, would this have happened to me? I wasn’t  doing anything that I did/didn’t do to be ‘bad’, and I already hated myself  that much – punishment on top of the punishment I already put myself through was the last thing I needed. Having this sort of treatment reinforced that there was no hope for me of ever being a decent member of society.

It also exacerbated the PTSD. Having to gain weight would bring my sleeping mind back to life, and I’d be engulfed in the flashbacks and nightmares I’d been trying to block out. I’d wake up in this little prison, finding myself trapped – tied to the bed in my reality now, feeling powerless and alone. I always emerged from these admissions more broken than I went in.

It’s not only myself or others with eating disorders that this post is about – it’s the other people locked in HDUs like this one. Where did people with a mental illness cease to be human beings who are sick, and become less-than beings to be locked away and submitted to such a horrible experience? It really isn’t right at all.

Hospital – General Introduction Trigger Warning

I have wanted to write about my experiences in the hospital system for a while now.  I think it’s very important for people to read about them – because there’s a lot that could be improved, a lot that should never have happened. There have also been a lot of ‘gifts’ – people I’ve met, experiences and insights gained, and the not-at-all-little-fact that I’m alive – here and now. With all that’s happened, I should not be alive. I owe my life to the hospital and the people who work there, and I will be forever grateful to them for this.

There is no way I could ever write about all of it without writing a huge thick novel, because so  much has happened over so many years. I thought it might be helpful to write an introduction post so that all the boring details are gotten out there in the beginning and when I post about my experiences, I don’t have to keep explaining those details quite as much. It also might help to just set the scene a bit, and so this post is really just an overview. There will be more posts in the near future on topics such as – what is an average day like? What are meal times like? What happens in ward rounds? etc – also I will write about experiences that I personally had, that stayed with me. I will endeavor to keep the hospital and the people involved anonymous, although if you live locally to me, you will probably recognize places and even people.

Over a period of approximately fifteen years, I had over 150 hospital admissions – as documented in my hospital files – at what I’ll just call ‘the hospital’ for my eating disorder. (I am sure there must be errors, because that is too high a number even for those years, despite the continual admissions). Most of these were on their eating disorders unit, which is comprised of four to five beds within a 25-bed psychiatric unit that also houses the Geriatrics and the overflow patients  from the other psych wards. It’s a locked ward, meaning bars on windows, very strict security, body and belongings searches, confiscation of items that might be used as a weapon (you would be surprised what could be made into a weapon – desperate people become very resourceful) and the  majority of the patients are there against their will.

I also had admissions to the medical wards for eating disorder complications – including general wards, ICU, CCU, and the infectious diseases ward (as a result of having dangerously low white cell counts). Mostly, the ED  unit kept me there when I was medically unwell. When I was having TPN, all of the nurses learnt how to manage it specifically so they could keep me there instead of sending me to a medical ward. I think it’s because they have decided there is a huge danger of an ED patient on a medical ward being able to engage in ‘tricks’ that might ultimately end their own life, and I’m grateful that they went to all that trouble for me and those who might need TPN in the future.

The ED ward at this hospital treats more acutely ill patients since there are so few beds to go around – those beds are to cater for the entire state, with a population of now approximately 4.6 million people. In our state, there is one other ED unit – a very small private hospital a few suburbs away with approximately 12 beds. They don’t cater for patients who are medically too ill, and they require you to be ‘ready’ to recover – if you aren’t, you are kicked out. I have never been inpatient at that hospital as I can’t afford insurance, I wouldn’t have been able to stay there anyway as I’ve always been too medically ill and too non-compliant up until about 2 years ago.

I always have, and still do, carry a lot of guilt for how much I needed these scant resources. My being there meant that someone else missed out, and it’s part of what motivates me to stay out now – so as not to ruin any more people’s chances of getting help.

These resources however are far too rare, especially for the population they are meant to support. There are states in Australia where this ratio of ED hospital beds to population is even worse. We also have issues like patients not being accepted as they fall outside a catchment area of a certain hospital – you can’t pick and choose which hospital you will go to unless you are going to a private one, and many people just can’t afford that, even public health isn’t free here any more.  WE NEED MORE TREATMENT OPTIONS for people with eating disorders. Desperately so.

I’ve no idea what the average length of stay for patients here is – but they are usually at least a few weeks to months. I know patients who have had over a year’s continuous admission there. My longest was approximately 10 months, my shortest, two weeks. My usual length of admission was 3 months. Many times, I didn’t even have an entire week at home before being readmitted for weight loss. I was on an involuntary treatment order for almost ten years continuously, so I had no choice about being hospitalized, and no choice about my treatment. At one point I tried to take out a Do Not Resuscitate order in the fear that like a friend of mine, I would be resuscitated after a heart attack resulting in badly crushed chest and agony for whatever lifetime I had left, to be told that because I was a mental patient, I wasn’t even permitted that dignity.

This hospital, to it’s credit, has tried it’s best to develop it’s eating disorders program over the years, and since I’ve been there over that time, I’ve noticed the changes. When I first started to be admitted, it was a very lax program.  There was a lot more freedom and not many rules. Groups were pretty non-existant, but there was a more ‘family’-like feel, with the ED unit becoming a safe haven from the world where patients came for support even after discharge, with an unofficial day/drop in program. We were given a lot more responsibility for helping ourselves, even down to prepping and setting up our own nasogastric feeds and putting down our own tubes every night. (Of course this led to sabotage.)

Things these days are far more strict. Nowadays you are strictly controlled for every minute of your day. You eat what they make you eat, you can’t have any special requests. You eat when they make you, for a set amount of time, and you can’t eat at all outside those times.  You sit with the staff or are in group for an hour after every meal, and they do their best to have groups – even if most of them become just watching old Glee DVDs because while the program is great on paper, there isn’t the staffing to carry it out.

You can’t get out of the weight gain either – if you even eat all but just one bite of a meal, you are supplemented for the entire meal. They do force – there is simply no way out. There is a large and well trained security force at this hospital and the staff will call them up to the ward regularly to restrain people.

They’ve become more knowledgeable about the various tricks and ways to sabotage and every loophole possible has been closed off.  In terms of identifying it’s weaknesses and doing it’s best to rectify them, this hospital has come a long way.

After years of continual admissions, I was allocated a case manager at our mental health clinic, separate from the hospital campus. Instead of going to the weekly ED clinics to be weighed and see the dietician etc – I would see my case manager/s (sometimes I had two of them) and a consultant psychiatrist. I preferred this. The focus was now on trying to give me a better quality of life with the time I had left – and to treat me in the community rather than always inpatient. I still spent as much time inpatient, but had more support in between – all week instead of once weekly.

As my health deteriorated I really needed the continual support as I became unable to care for myself a lot of the time. I did come very close to needing to be institutionalized in a  nursing home or similar and I’m so glad that didn’t happen. I’m especially grateful to  the home and community care team in my city who for years have helped me be able to stay at home by helping me with self care, shopping, cleaning, etc. If I’d been institutionalized I probably would only have gotten sicker and inevitably died.

Two years ago, I finally was able to put on a bit more weight and to keep myself there, enough to stay out. I am now still a community patient with the same team as I’ve had for admissions – I just don’t need to be admitted any more. Hopefully over time, I will need this team less too. In fact, I wish to be independent and responsible for myself some day.  I never want to go back there again.

However, if I do – you know what to get for me: (and you would win the internets and my heart if it was Shalimar in there!)

(Image Source)

I hope this hasn’t been too boring – please let me know if there is anything I can improve. There will be more – hopefully less boring – soon.