Dungeons and Doctors

It has only been recently that I have realised just how much I now mistrust doctors, and how little faith I have in the medical system.

I am the worst kind of patient. I spend hours trawling through medical journals before appointments, comparing random control trials. It must be the researcher in me.  I project my point of view in a fairly assertive manner. I am not afraid to ask for what I want. I am not afraid to offer my view on the treatment protocol and dosage. I don’t want to be told “you’re fine”, or “you’re not fine”. I want to be given print outs from all my tests and all my procedures  and given my exact blood levels so I can determine for myself my exact level of “fineness”.

I, with absolutely no medical training, believe I know more than doctors about my body and mind. And I really wish I could dampen this line of thinking. I wish I could trust the people that are responsible for my care. I wish I didn’t question every damn aspect of my treatment.

But you see, my past experiences have made me this way. Over the years I have had to learn how to navigate the medical system.  I am used to having to fight tooth and nail for the treatment I need. I expect to be dismissed. I expect to be turned away. I expect to be denied treatment. So I arrive at each appointment on the defence and ready for battle.

Amongst other nitwitish behaviour, I have had the privilege of doctors telling me that:
– I was just a new mother who needed a bit of sleep. Actually I was psychotic and suicidal, and had just spent 45 minutes describing my symptoms in detail to the doctor. My baby was seven months old and had been sleeping through the night for at least five of them. A week later I was admitted to a mother and baby unit where I was kept for 2 months. The hospital told me I was one of the worst cases they had seen.

– That I had a case of gastro, and perhaps some endometriosis pain. I was actually in agony due to my autoimmune disease. And when I say agony, I mean that I had to be tanked up on IV morphine. I feel this instance is partially forgivable since my disease is so incredibly rare. But surely the fact that I was screaming in pain and had to be administered morphine was a clue that this wasn’t a case of “normal” gastro, and warranted further investigation.

– When admitted to the psychiatric ward, I was initially refused treatment for my autoimmune disease. Apparently, despite having a formal diagnosis from biopsy results from another doctor, and despite my diagnostic doctor giving explicit written instructions on the type and dosage of medication I needed, my 25 year old registrar didn’t believe my condition existed as she hadn’t heard of it. Bitch, please. My specialist with decades of experience hadn’t heard of it until recently. And despite the fact that I consider myself a reasonably intelligent person I highly doubt I could fabricate such an elaborate diagnosis involving the infiltration of certain white blood cells.

– as a psychiatric inpatient, my gastroenterology team continually avoided seeing me. My nurses called them repeatedly. It was made abundantly clear that I was their least priority. I dunno. Maybe I smelled?

– as an inpatient my surgical team repeatedly prepped me for the surgery and procedures I needed, before cancelling at the last minute. I understand hospitals are busy places and things get bumped. But I was an inpatient at that hospital for 9 weeks, and each time I was told I was at the top of the list. To this day I am not sure why I wasn’t given the treatment I needed and why I eventually had to be referred to entirely different hospital to receive it. And how that hospital managed to conduct the surgery on the day and time they said they would.

– I was explicitly denied nutritional treatment because I was a psychiatric patient. Even though my autoimmune disease is heavily related to diet. They did tell me that if I were on a medical ward I could receive the treatment. Which didn’t improve the situation. Or my attitude towards them.

– I was left in severe pain, for eight hours, because an the on call doctor basically couldn’t be bothered to come down to the psych ward. When he did arrive the next morning it eventuated that I was actually extremely ill, and was rushed off for an emergency CT scan. Not a hypochondriac after all!

9-ot

I believe the core of the problem was that I was a psychiatric patient.

When you are a psychiatric patient you lose your voice. You lose your power. You are considered to be “crazy”. I was in a no win situation where I was given poor and sometimes downright neglectful medical treatment, but if I tried to object I was seen as over reacting, or causing trouble. I was “not in my right mind” after all. What the hell do I know? If I objected,I was medicated, because that’s what happens in psychiatric wards. And if I objected to that I was threatened with injections and security guards. I was silenced.

This would not happen to someone with a physical illness, and a physical illness only.

I often feel sorry for my newer doctors today. The ones who have done nothing wrong. The ones who are incredibly helpful and supportive. The ones who listen to me. The ones who are being punished for the actions of others.

But there is just this large part of me that refuses to hand over my trust to them. I NEED to be in control over my care. I never want to be in the powerless situation I was last year.

I just have this overwhelming feeling that to ensure my own wellbeing I need to keep fighting these Dungeons and Doctors.

The Right to Fight Stigma

So a few weeks ago I came across an online article that talked about ways to reduce mental illness stigma. Since I’m doing a PhD in the subject I’m fairly interested in what is being suggested and advertised within the community, so I sat down and had a read.

It was a well written and informative article, unfortunately I closed the window and haven’t been able to find it again – or I would have linked it to this post. Anyway, I was pretty pleased that this issue was being publicised. But then, just towards the end it started talking about how the community should be listening to ALL people with a mental illness, not just the “high functioning few” with potentially less severe diagnoses. That although its great that highly successful celebrities and athletes “come out” and talk about their struggles with mental health, there are many people within the community who are unwell and unable to function to this level. That the community should be aware of the severity of mental illness, and that being  diagnosed with a mental illness and able to function at a high level iis not necessarily the norm. They likened it to someone with Stage 1 cancer advocating for awareness instead of those with Stage 4 cancer (which I didn’t quite understand, because whatever the stage, it’s still cancer!). Although it was never specifically vocalised, it kind of felt like the author was saying “if you are high functioning you don’t have a REAL mental illness, and you are stealing all the attention away from people who need it”

I get what was trying to be said. And I do agree that high functioning is not necessarily the norm, and that all facets of mental illness need to be respected and recognised. I also get what the author was trying to say about celebrities and such sharing their personal stories. That there is a risk of people thinking “well, SHE has bipolar disorder and seems to be doing ok. So why can’t YOU? Mind over matter. Get your act together.” I get it.

But it kind of bothered me as well. You see, doctors have told many times that I am high functioning. So I suddenly felt uncertain. Do I have ANY right to be blogging about this? To be researching this? To be fighting for this? Is this what people think of me? Am I  undermining the severity of bipolar disorder? I felt unsure, and this is partly why I haven’t blogged recently. After reading this, everything I wrote felt like it was coming out wrong.

Then I thought; “Rachael, you have been diagnosed with a mental illness. Your experience is just as valid as anyone else’s. You wish to devote your life to reducing mental illness stigma, spend an extra four years in school then enter a poorly paid line of work so you can help other people. What exactly have you done wrong?”

So today, I would like to respectfully disagree with the above argument; for four main reasons.

1) When I have been extremely unwell, when I am “low functioning”, so to speak, fighting to reduce stigma is not my priority. Getting through another day is my priority. Getting myself out of hospital is my priority. I’m not equipped to mobilise, there is no way I could have undertaken a PhD. I couldn’t even concentrate long enough to watch ten minutes of daytime TV. I gave up reading. I could barely follow conversation. Hell, after ECT I practically forgot who I even was. When I am in the midst of an episode I am in pure survival mode and quite frankly I don’t give a shit about stigma reduction.

Now that I am in a better place I feel it is my responsibility to fight for what is needed, and for the people who – like I used to be – are not able to advocate, to raise awareness and to share their stories. The people who are struggling every day. The people whose illness has taken away their voice, whether temporarily or permanently.

When I was heavily pregnant I couldn’t lift heavy objects, so people assisted me. After my son was born I was able to lift once more. This is the same, I want to give a hand to the people who can’t lift for themselves at this point in time, and even those who may never want or be able to. And I don’t see anything wrong with that.

2) Isn’t any action to fight this fight good? One of the major problems with stigma reduction is that people are fearful of mental illness. It is misunderstood and there is a strong belief that mental illness leads to violence. People who commit obsence acts of violence are often proclaimed to be mentally ill. The media continually exacerbates this fear with blockbuster films like “Fatal Attraction” and “The Shining”, which , although fantastic films in their own right,  perpetuate this belief that us mentally ill folk are dangerous.

I believe that one of the most helpful things we can do to try and reduce stigma is to talk about it. To share our stories. To make this a less taboo subject. Mental illness is incredibly common, and the more people talk about it, the less of “freakish” it becomes. The more we can show that all sort of people can be diagnosed with mental illness – not just mass murderers and terrorists – the more we can fight stereotype of mental illness and violence. Whether it is the average joe on the street or a Hollywood A lister sharing their experience – isn’t this what is required? And since celebrities generally have a wealth of social power…wouldn’t this be a positive thing?

2) Is the severity of my disorder dependant on my level of functioning? And if so, how do I establish how “severe” my mental illness is? I’m the girl with the proverbial curl in the middle of my forehead. “When I am good, it is very very good, and when it is bad it is horrid”.

I’m considerably lucky. And I realise that. I can go for months or years without a sniff of a problem. I can educate myself to a high level. Work. Maintain my marriage and relationships. Parent. Stay out of hospital.

But – when I DO have an episode it is catastrophic. I don’t just go to bed for a few weeks. I end up in hospital for months. I’m psychotic. I’m forcibly injected. Involuntarily detained. I’m not even allowed to wear my own clothes. I’m told I am treatment resistant, a “difficult case”, and one of the worst that the doctors have ever had to treat.

If you met me without knowing my past, and I told you my diagnosis, you would probably assume I had a very mild version of bipolar disorder, or perhaps that I had been misdiagnosed. If you read my medical history you may think otherwise. I’m still not sure of the severity of my illness, and I don’t care to speculate – it is what it is. But, my point is,  unless you know all the facts, how can you judge the extent of someones illness? And really, whatever the supposed “severity”, mental illness is mental illness. Those with Stage 1 cancer also need to endure months of treatment, sickness, fear, and stress. Their experience is still valid, as is the experience of those with so called “less severe” mental illness.

3) Being high functioning isn’t always easy. People don’t always believe us when we say we are unwell. I have been denied treatment many times by numerous doctors, hospitals and nurses because I appeared to be functioning well despite my illness. By the time I was (grudgingly) offered help it was an emergency situation. Think about it; how many so called high functioning celebrities or public figures or people who seemingly “have it all” end up attempting or committing suicide.  This is the kind of mistake that costs lives

At the end of the day, my view is that stigma reduction is a major issue, and that anyone who feels able to fight should fight. I feel like the article, in a sense, was discriminating between experiences of mental illness, which is basically what we are trying to avoid in the first place. Diagnoses, status, functioning aside, we all have been touched by darkness. We all want the same thing; equality. So I will continue to research, to blog, and to share my story.

On Confidence: Wearing a Witch’s Costume and Owning It

When I was about seven, we had our annual school concert coming up. Now, you have to understand, these concerts were HUGE. Our school was big on the performing arts, and had a theatre so large and sophisticated that it was routinely used for community events. Our annual school concert involved performances from every grade, and every parent, grandparent, or associated family figure came to watch.

Anyway, somehow I got it into my head that I needed to dress up as a witch for our performance. To be fair, I think the song was about a witches cauldron, so it is (a vaguely) a plausible conclusion. It may also be that we were told to “dress up”, which presumably meant to look nice, but for me somehow translated to “dress up as a witch”. I was also a bit of a “show off” as my family fondly remind me, who loved to sing, perform and dress up. Once, during a particularly solemn and quiet part of a catholic wedding ceremony, I asked my father whether I should get up and do a dance in the aisle to entertain everyone. So, it is also entirely possible that I just wanted to crack open the costumes.

Luckily for me we lived in a small town in Norway, in a community which, due to the oil industry and resident NATO base, was largely American. In line with American tradition, Halloween was one of the biggest events of the year, and consequently I had every Halloween costume you could imagine. Including (drum roll here) a witch’s costume.

This costume was fairly elaborate. Head to toe in black cloak. A waist length grey streaked black wig. An enormous pointy hat. And the crème de la creme, a prosthetic warty hook nose. As I got dressed on the day of the concert, I looked, if I do say so myself, pretty frigging amazing.

We drove to the school, and to the absolute horror and dismay of my parents every single other child was dressed in their Sunday best. White shirts, black pants, fresh clean faces, polished shoes. And then me. The witch with the prosthetic nose.

My teacher saw me and came over and without batting an eyelid said. “Oh wow! Look at you! You look great!”

Mum, dying inside, hurridly said “I’m so sorry, there must have been a misunderstanding…I’ll take her home get her changed!”

My teacher, being the laid back, chilled American woman she was, waved her hand “Oh no, don’t worry about it. Look at her! She looks awesome!” before breezing off to greet someone else. To be fair. I did look awesome.

So that is how I ended up on stage at the annual concert dressed as a witch.

I sung my little heart out, beaming from ear to ear. I was as happy as a king (or, ya know, a witch) and seemingly completely oblivious to the fact that I was wearing slightly different attire to everyone else. Halfway through the performance, some backstage guy came up to me and told me to take my hat off because they couldn’t see the kids behind me. I was cool with that. I mean, I still had the wig.

For my parents, in the audience, it was slightly different. As my class trooped up on stage there was lots of murmurs and whispers, and then a little girl voiced what everyone else was thinking: “But why is that girl dressed as a witch?” Sadly I don’t have a photo I can show you of my big moment. It is one of the great tragedies of my childhood that my parents didn’t take a photo or video of the event.

On the way home my parents tentatively asked me how I thought it all went. “Oh it went well.” I told them. “But I was the ONLY one who BOTHERED to dress up!”

And that, my friends, is confidence.

A decade later, I lost all confidence completely. An angsty teenager, with a diagnosis of mental illness. I was so concerned with my image, what people thought of me, whether I was “good” enough. I used to call my friends before going out to check what they were wearing. Change my outfit about a million times, and then still feel like crap when I went out. Although I knew the answers, I was afraid to speak in class, purely because I didn’t want to bring attention to myself. I analyzed the behavior of others to a ridiculous degree. Were they talking about me? Do they like me? Have I done something wrong?

This anxiety about life went on for a long time. I strived for perfection, but never seemed to achieve it. Each award I won, opportunity I received, I was sure that it was a mistake and I was some sort of imposter. When I was offered a PhD scholarship, I kept thinking of reasons why the board had made the wrong decision. I got incredibly nervous talking to my academic superiors, and expressing my views and ideas. Because they were talented and had spent decades in the industry doing amazing things. What could I, a lowly research student, possibly add of value? I hated my body. I felt completely inferior to every human being on earth. I was frightened to complain about service, to make phone calls to unknown people. I let others walk over me. It probably didn’t help matters that I was constantly hearing voices that told me I was inadequate and “bad”.

Last year, after being released from hospital, I just kind of gave up on it all. I had been in hospital for five months, I had a serious mental illness, I had had ECT, and EVERYONE AREOUND ME KNEW. I wasn’t perfect. That was well established. One day, like an epiphany, I distinctly remember saying to myself; “Fuck it. I’m ok with who I am. If other people aren’t, that’s their deal. I can’t do this anymore.” And I started to like myself.

Now, I’m completely ok with the fact that I have mental illness. I’m not going to shout it from the rooftops. I don’t let it define me – as I am a bunch of other things aside from “bipolar”. But if someone asks me about it, I will talk to them.

I’m ok with the way I look. Sure we all have off days, but I don’t spend hours scrutinizing myself in the mirror, and I wear what I want to wear.

My relationships have improved. I don’t feel needy or walked over. I am more assertive. I have so much more free time now I am not obsessing over every little detail. I recognize that I will never please some people, and I have made peace with that. That’s their loss.

I’m more assertive when it comes to service. I am not afraid to ask for what I want, and (politely) complain if it is not to standard. I don’t ask Hubster to call people up. I say “excuse me” to people who are standing in my way, instead of awkwardly standing there like some weird stalker, waiting for them to get off the phone and move.

Increased confidence has had an impact on my PhD. I feel comfortable talking to my superiors. I ask lots of questions, because that is what I am supposed to do. I’m not SUPPOSED to know everything yet. It is my JOB to learn. I play like a scientist and look at the evidence; positive feedback, awards, an elite scholarship. I worked hard and have been rewarded. I no longer feel like an imposter.

And I write what I want to in this blog. I tell my story, like it is. I give my opinion, how I see it. I don’t spend hours writing a post, then suddenly feel complete paranoia in posting it in case someone doesn’t like it, or thinks I am stupid. It’s the internet. There’s always going to be strange people. But the way I see it, this is my blog, my story, and I am not forcing anyone to read. The amazing thing is that I have had a huge increase in followers – over 600 on WordPress (you guys are awesome!)!!! What’s more, the wonderful people who read and interact with my blog are so incredibly supportive and kind. Thank you for being you!

I guess what I am trying to say is that I am not perfect – and that’s the whole point. I still have, as I suspect everyone does, days where I lose confidence in myself. And that’s ok. It’s when lack of confidence controls your life that it is an issue. Sometimes when I feel unsure I think about that little girl in the witches costume. After I have finished laughing to the point of weeping, I smile and try and channel her confidence. Because if you can go on stage randomly dressed as a witch in front of 500 or so people and totally own it, you can do pretty much anything.

I Wish I Had Broken My Leg

“I wish I had just broken my leg.” She told me, as we sat in together on the cracked and threadbare sofa in the psychiatric ward. “My brother-in-law broke his leg a few months back. Stupid motorcycle accident. His fault, by the way. He was in hospital for less than 24 hours. The entire family descended. Brought him cards and presents. Cleaned the house. Cooked him meals…I have been sick for months. I have been in hospital for weeks. Not a single person has visited me, cooked meals for my family, babysat my kids, sent me a card, or even acknowledged our trauma. I guess people understand physical pain more than mental pain…Why couldn’t I have just broken my damn leg?”

I empathise and understand her story. I believe this is the unfortunate, frustrating, and upsetting case for many – if not most – individuals hospitalised for psychiatric reasons. But I don’t necessarily agree with her point.

Because, come on, who doesn’t understand mental pain.

Everyone in the world has undergone some form of mental pain. While, obviously, the entire population doesn’t suffer from diagnosable mental illness, I refuse to believe that ANYONE sails through life without feeling some degree of emotional turmoil – whether it be loneliness, heartbreak, fear, or sadness. Turn your radio on. I guarantee that 90% of the songs given airtime detail emotional states, both positive and negative. Artists don’t sell albums filled with songs about their broken legs.  It’s all about broken hearts.

It’s not lack of understanding. It’s discrimination and stigma.

I have two chronic illnesses that I deal with every day. Both offer their own “special” challenges. But I often think to myself that if I were to play favourites, I would prefer my autoimmune disease to my mental illness.

Don’t get me wrong. My autoimmune disease is a giant pain. Literally. I am so sick of explaining it to people. To having this rare illness that no one, not even the so called professionals have heard of. To having to read every single ingredient with a fine tooth comb. Of irritating the restaurant staff with my paranoid questioning. Of hurling in the car park afterwards anyway. Of indescribable pain and pills. Of fevers and fatigue and the kind of bone ache that makes you want to cry. Of highly unpleasant tests and procedures. Of hearing that my blood eosinophil level is four times the normal limit. And that’s an improvement. Of being scared to eat new foods. Of not leaving the house without a vomit bag. Of being threatened with steroids and hardcore immunosuppresants that have serious side effects. Of being sick.

But, you know, people respect it.

If I throw up or have an allergic reaction or go to bed with fevers and sweats, people are generally sympathetic. If I can’t go to a social occasion because I am physically unwell, people are cool with it. “Get well!” They say. “Rest up!” They say.

But if I become mentally unwell, people (with exception, of course, to the few of my closest and most wonderful loved ones) don’t tell me to “Get well” or “Rest up”. I am encouraged to pull myself together. Keep my chin up. Not feel sorry for myself. Think of people who have worse problems.

If Physical Illness Were Treated The Same As Mental Illness: Image from: http://imgur.com/CWFTYoV

If Physical Illness Were Treated The Same As Mental Illness: Image from: http://imgur.com/CWFTYoV

Like mental experience doesn’t count.

Talk about double standards.

Those of us with mental illness are somehow expected to negate our emotional experience, while validating the emotional experiences of others through expected social interaction. We are not allowed to be clinically depressed, manic, or psychotic. But we must listen and empathise with those who are stressed, tired, involved in some sort of altercation, lovesick, feeling guilty, feeling happy, etc etc. Of course, if we want to be sad after a break up, or a death, or a job loss we can. But only for a socially acceptable amount of time, and only to a socially acceptable degree.

In my ideal world my mental illness would be treated with the same respect as my physical illness. And in my ideal world suicidal individuals would receive the help they need, and those who self harmed wouldn’t fear seeking medical assistance. Funds would be issued to psychiatric hospitals. Mental illness wouldn’t be viewed as something only the weak or dangerous succumb to. When I was younger, I  wouldn’t have hid my illness for months because I was scared of what people would say.

As time goes on, the less and less I seem to care about what people think of my mental illness.  In the famous words of Dr. Suess “Those who matter don’t mind. And those who mind don’t matter.” My experiences have weeded out the people who don’t matter. The people who have a problem with the fact that I have an illness I did not choose to suffer from (and I loath to use this term, as I do feel there are positive aspects of mental illness as well as negative). But I also know that I am fortunate, and possibly somewhat of an exception. I know who my true supporters are. My family and close friends are exceptional. Many others struggling with mental illness don’t have this kind of back up. I’m one of the lucky ones.

But sometimes I sit back and wonder how many people I would have lost if I had broken my leg instead.

I’ll Ride With You

You know, every time I hear that some idiot has gotten hold of a gun and committed unspeakable crimes I brace myself for the almost inevitable revelation that he or she was “mentally ill.”

Then, in that moment, in addition to the horror of violence, the destruction of lives, and the grieving of loved ones and communities, stigma is resurrected. All the work we all do to reduce stigma, to educate others, to prove to society that the mentally ill are not dangerous and should not be feared or discriminated against becomes moot. These unspeakable acts offer proof to society that the mentally ill ARE dangerous. That we should be feared. And we, as advocates of mental health, need to work that little bit harder once more.

The same can be said for Muslim communities. Except, unlike mental illness which is largely invisible, Muslim individuals cannot hide their faith. And, quite frankly, they shouldn’t have to.

Yesterday, Australia watched on in disbelief as a political extremist held seventeen innocent people hostage, at gunpoint, for over sixteen hours in the Lindt Cafe in Sydney’s CBD. The siege ended in tragedy when heavily armed police were forced to enter the building, the once bustling cafe lighting up in the night with gunfire and the air pierced with screams. Tragically, two people, a 38 year old mother of three and the the 34 year old manager of the cafe, lost their lives. Four more were injured, including a police officer. The community, and the nation in general, was rocked.

As soon as I heard the news, turned on the TV and saw that an Islamic flag was being held up in the window of the cafe, I literally flinched. Shit. I thought. Not again. This is a really bad time to be an Australian Muslim. 

Before so, but particularly since the absolutely horrific events of 9/11, Muslim and Islamic communities have been stigmatised and discriminated against. Innocent men, women and children who have absolutely nothing to do with the violent acts of religious and political extremists are harassed, bullied, and assaulted. I’ve heard stories of women getting onto busses with their children and being called “terrorists” and spat at. Muslim men being attacked walking home. Mosques being vandalised. How is the direct persecution of individuals who have done nothing wrong, the law abiding, peaceful citizens who cannot be held responsible for the violent actions of a small minority, possibly acceptable behaviour?

As with mental illness, we always hear about the few people who do something absolutely horrific, not the thousands of other people who just get on with their lives peacefully. I found this great diagram from Anonymous Arabist which illustrates the extent of Muslim terrorism in relation to the religion. I’d like to reiterate the authors disclaimer that she had to enlarge the population of Al Qaeda by ten for it to even show up on the diagram.

Regardless, from the moment I saw that Islamic flag, I knew there would be a backlash against the Muslim communities in Australia. And then something surprising happened.

A young woman on her way home from work saw a Muslim lady, clearly distressed, about to pull her hijab off. She ran after the Muslim lady and told her not to take it off, that she would walk with her if she was scared. Then, first within Sydney, then from around the country came the outpouring of Facebook posts and tweets from people offering support to Muslims, literally offering to ride public transport with them if they were concerned for their safety, and showing solidarity. The hashtag #illridewtihyou was born.

Of course, this kind of social media campaign won’t fix the problem. But it is a step in the right direction. I’m so relieved that in the wake of such a tragedy, there is outstanding recognition that the violence was the result of a single extremist individual, not an entire faith.

To the loved ones of Katrina Dawson and Tori Johnson, who tragically lost their lives, my thoughts and prayers are with you. To the hostages who have gone through a hell I can’t even begin to imagine, I pray for your physical and mental recovery. To the police force, thank you for dealing with such a difficult situation in such a remarkable manner. And to the Muslim communities #illridewithyou

illride

In Hospital…or In Hiding?

It’s funny, because although no one would ever question a hospitalisation for physical illness, inpatient treatment for mental illness – and for that matter rehab for drug/alcohol addiction – can often come under scrutiny. There is a school of thought that while hospitalisation may be beneficial in the short term, at the end of the day us crazies or drug addicts have to return to the real world, stop hiding out, and deal with the problem.

And yeah this is true. I get that. I have little doubt that there are people out there who, particularly in the case of mental illness, prefer being in hospital to being at home. I met a few. They were basically homeless and hospital offered them a sanctuary. In hospital you are freed from responsibilities. You don’t have to work. You get your meals cooked for you. You get a bed and someone changes your sheets and cleans the toilet. Just like with jail, where offenders break parole to get back inside, institutionalisation is a real thing, and a real problem for some people.

But, you’ve got to understand, when you are in hospital you lose your basic rights. Privacy for starters. Ever tried going to the toilet with a nurse watching you? Had to point out the diagram (on a seven point scale, with one being “you’re never gonna pass those rocks” and seven being “basically a puddle of brown water”) that best illustrates your latest bowel movement? Had absolutely no choice as to what instruments are poked into your various orafices? Whether you are hospitalised for physical reasons or mental reasons you become property of the medical system. And that ain’t fun.

image

While you are in hospital you have to put up with a lot of shit. Sharing rooms with people who snore or basically don’t understand what a toilet flush is. Eating reconstituted crap for dinner. Other people’s noisy visitors. People stealing the food you store in the patient fridge. Getting no choice as to what to watch on TV. Only getting to see your loved ones at certain times of the day. Having your clothes and possessions confiscated.

If all that is better than being at home, everyday life has got to be pretty damn hard. The two times I was hospitalised because I ASKED to be hospitalised, life WAS extremely hard. Both times I fought and fought for months, eventually realised that I was going to get extremely unwell or possibly do some damage to myself, and asked for inpatient treatment. It was a last ditch effort. It didn’t occur to me that I could be hiding from life. I just wanted to get better, and hospitalisation was my final option, so I COULD get back to my life.

For each of my hospitalisations, whether for physical or mental reasons, I have been admitted because I was not well enough to cope without 24/7 care, and I was released when I was well enough to care for myself. Whether I was an inpatient for bipolar disorder, the delivery of a newborn, ovarian torsion, surgery, or my autoimmune disease is irrelevant. Whether I stayed for 24 hours of nearly half a year is irrelevant. Each of those times I needed care. I received it. Then I went home. Most of those times I had little choice. All of those times I did not want to be in hospital, and left as soon as I was medically fit.

For each of my hospitalisations, whether for physical or mental reasons, I have also had to go back into the real world, learn to dress my wounds by myself, remember to take my medication, stop lying in bed all day, and continue my recovery on my own. I knew this and I accepted this. And for each of those occasions I was practically begging my doctors to be released.

But this is my personal experience, and I know everyone is different. I do understand where people are coming from when they question the value of hospitalisation, in particular long term hospitalisation. It is not a natural environment. It isn’t an ideal situation.

However, hospitalisation for any illness is less than ideal. For patient comfort, to retain some semblance of a normal life, and, yes, due to the strain on the health system, outpatient treatment for all illnesses is always preferred. But sometimes people need more than outpatient treatment. And the choice (or the un-choice) of being admitted into a psychiatric facility, or going into rehab to kick your drug habit, should be respected in the same manner as physical hospitalisations are.

While I was in the mother and baby unit, I voiced these issues to a nurse. I told her that I was worried that people would think I was just “hiding” from the real world. I didn’t want people to think less of me for receiving inpatient psychiatric care.

She just laughed and told me “Rachael. You’re not in Club Med. You’re in hospital.  You’re REALLY REALLY sick, and we are helping you get better. You NEED to be here. Just like you would NEED to be in hospital if you had appendicitis. And they are not going to let you go until we know you will be safe.”

For me, personally, hospitalisation, being torn away from my family, giving up my rights and freedom, and being subject to unpleasant tests and experiences is pretty high on my list of Things I Like To Avoid. But in saying that, despite my complaining, my hospitalisations for mental illness have saved my life. And for that I will be ever thankful.

What is your opinion of psychiatric hospitalisations?