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!

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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.

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I did it! And I didn’t CoC it up.

I’ve been distinctly absent from the ‘blogosphere’ over the last few months. It has been an interesting ride.

So I went back to the PhD and within the first six months you have to complete what they call your “Confirmation of Candidature” (or CoC as we PhD’s call it. Hubster, being the mature adult he is thought our term CoC was hilarious. It all started when I accidentally sent him an email meant for my supervisor where the first sentence was: “I’m concerned that my CoC is too long. Can you please give it a look and see what you think”.)

Anyway. I didn’t realise  the CoC it was such a big thing (heh.) until I would tell people in the office what I was doing and they would be all “Eeeee” with a strangled look on their faces, before regailing me with some kind of horror story from their own CoC. Then they would try and save it by saying “Oh, I’m sure you’ll be fine though.” Kind of like the last weeks of your pregnancy where everyone around you seems to have had a near death experience during labour.

So what is a CoC?. This is basically where you complete a long literature review and research proposal on your topic. Mine is a few thousand words off my Honours thesis. And it is pure blood, sweat and tears. Literally. I gave myself a paper cut on the damn thing.

So after writing the document you then to do a big presentation to the research board, all the faculty and grad students within the school attend as well. You yabber on about your topic and then everyone asks questions. There are three outcomes of this. You get through and are now officially a PhD Candidate. You get kicked out of the PhD program. Or you are asked to make some changes and once they are done you get through.

So basically I have been working full pelt on this stuff. Hubster and I were basically a tag team. I worked weekends for extra time. It was hard not spending time with my family, especially after I was away so much last year in hospital. I felt I was being pulled apart in different directions (the way, I’m sure many parents feel). It has not been easy.

One of my more relaxing Sundays…:)

One of my more relaxing Sundays…:)

Firstly, I had six months to complete this milestone. Problem is I completed three months. Got sick. Ended up in hospital forever. Had ECT. Returned in January to realise that because of my short term memory problems associated with the ETC…I HAD FORGOTTEN IT ALL!

The horror.

So I basically had to start again. Reread all these notes and diagrams I had made and try to make sense of it all. I now, basically, had 3 months to complete this task.

But of course, I have a three year old. I have very limited childcare. I was trying to achieve in three days a week, what other people achieve in five. Which is why I gave up and started working weekends, grabbing any extra time I could.

Then of course, I have two chronic illnesses that like to make themselves known occasionally. I have had flare ups. I am under the care of four different hospitals and have appointments with each. More time down the drain.

All in all it was a bit of disaster, and at times I felt like everything that could possibly prevent me from doing this PhD was happening. Maybe it was a sign? Maybe I should just give it up.

But one of my greatest assets and sometimes biggest downfalls, is that I am incredibly stubborn. I persist until the bitter end. I ignore people who tell me that is ok to give up. This can be a good thing, or a very bad thing.

So I continued. I worked my arse off. I took on board every ounce of feedback from my supervisors. I wrote a document I was damn proud of. I spent ages designing my presentation and then practicing it over and over again (alarming fellow grads who walked into the office to find me talking to myself). Then the day before my presentation, I stopped myself. I had done enough. There is nothing more I can do.

On the morning of the presentation Hubster very kindly made me breakfast and took Master D to daycare. On the way out he waved and called out “Don’t CoC it up!” Then I went….and I did it.

I stood up in front of all these academics that I greatly respect. The entire school. The research board. And I told them why I think we need to address mental illness stigma in the community. I talked about the complicated theoretical backing behind my design.  I told them how I wanted to achieve change. And, it really surprised me, but I loved doing it.

And I got some awesome feedback. My study design was “fascinating”, and “well thought out”. There were a few questions, but nothing major, and certainly nothing intimidating.

After I returned to my desk and found email upon email from people congratulating me which was so sweet. After the presentation the board have a big meeting to determine whether I am able to continue with my PhD (until you have achieved this milestone you are probationary). This process can take up to a week. I have heard it taking up to a month.

Within ten minutes I got a phone call saying that I was through (informally). A few minor budget adjustments and then I’m set to go.

I don’t often say this, but I am really proud of myself. After everything that has happened…I went back. I achieved what I wanted to do. I stuck with it. And from what everyone has been telling me…I did damn well.

My supervisor told me that a lot of people would have given up in my circumstances. And no one would have blamed them.

But I didn’t give up.

I did it!

This whole thing has been a confidence booster. And not just on the academic side.
I have proved to myself that I can fall down hard… and pick myself up again.

A year ago I was hooked up to a urinary catheter, in a psych ward, under involuntary status, pushing around an IV pole. I was completely dependant, psychologically and physically. I couldn’t even pee on my own.

A year on and I have learned to manage both of my illnesses. I get up every morning. I sleep every night. I earn an income. I achieved a major body of work. Hell, I can even pee by myself.

I did it. I came back. I have rebuilt my life.

And I didn’t CoC it up 🙂

World Bipolar Day, Questions and Answers

Today is World Bipolar Day. A day to raise awareness of this illness, and reduce stigma. Well, you know me an my feelings on stigma, so when I saw that the lovely Blahpolar and Raeyn from the Scarlet B both completed this questionnaire in light of World Bipolar Day, I thought I would join in. Check out both of these awesome blogs, and feel free to complete the questionnaire yourself.

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1. What does bipolar disorder mean to you?

I always see bipolar disorder as a lack of balance. I swing one way, then overcompensate and swing the next. Living with bipolar disorder is a quest to maintain that balance.

2. What was your life like before you were diagnosed with bipolar disorder?

Turbulent. I’m lucky in that I don’t tend to rapid cycle. In fact I can go months or even years without a full-blown serious episode. This may sound positive, but it means that when the shit does hit the fan it is basically a shitplosion that takes months to clean up afterwards. In between major episodes, before diagnosis, was constantly anxious, mild to moderately depressed and sometimes self harmed. Oh and I heard voices. Every day of my damn life.

3. How old were you when you were diagnosed?

I was 26 when I was diagnosed – less than a year after the birth of my first child. I was an involuntary patient at a mother and baby unit and had been for around six weeks. My medical team suspected bipolar disorder because of the extent of my depression and psychosis. They actually thought I was having a mixed state as I was completely wired. But I didn’t talk much and they couldn’t get a full medical history out of me. Also I really didn’t know that the periods of high energy and not sleeping in my past were hypomanic/manic episodes so never thought to mention it.

Then one day in hospital I woke up and wouldn’t shut the hell up. Seriously. Unsuspecting trainee nurses would be lured into listening to me rabbit on about completely random nonsense before they could say “It’s a trap!”. I proclaimed  that I was cured and felt so good. Then things started to get weird… I started going on about how I had superhuman powers because I didn’t need to sleep (oh. if only), and that my dreams could predict conflict in South Korea. Round about the point where I told Hubster I wanted to dance around outside naked my doctors slammed their clipboards shut. “Gotcha! Bipolar Disorder! Kaboom.”

Good job team! It only took 10 years to get a diagnosis 😉

4. How do you manage your symptoms?

Day to day, week to week, sometimes hour to hour. I take medication. I see my doctor regularly. I try to limit stress. I watch my diet. I write. Hands down best treatment I have had was ECT. It may have its controversies, but I now no longer hear voices every day. Which gives me so much more time to ponder world peace and what to watch on Netfix.

5. What is life like for you now?

Interesting. I’m not sure really. I’m recovering from pretty much the worst episode of my life, so I’m a bit anxious about my mood. I analyse every up and down and if I have a bad day it’s all “HOLY CRAP IT’S COMING BACK!”. I’m like a mood meerkat. Since ECT my psychosis has gone which is awesome. But I still have to work really hard to keep my mood stable.

6. Has having bipolar disorder affected your friendships, personal life, or professional life?

Undoubtedly. Friendships – not so much. The people in my life who choose to have a problem with an illness I do not choose to have are no longer in my life.

Personal life – yes. I would agree that being separated from my family for months while being in hospital had a distinct negative effect on my personal life.

Professional life – yes. It took me years longer to finish high school and university due to episodes. I had to suspend my PhD months after starting, and I had to cancel a presentation I was due to present at a conference because I was in hospital.

7. How do you think society treats people with a mental illness, especially bipolar disorder?

Not great to be honest. I think society has more understanding than say, the 1950’s, where we all got locked up in an asylum. But there is a lot to improve on. I would like mental illness to be treated with the same respect as physical illness. It frustrates me that I knew nothing about World Bipolar Day until I came on WordPress. Nothing in the news. Nothing on Facebook. Nothing on the radio. But when it is, say, a day to recognise Diabetes, it is so widely promoted and respected. Mental illness kills too! (Also, I’m not dissing Diabetes. It is a serious illness – and I, myself, have a physical illness too. This is just one example of how mental disorders are looked past within the general community).

8. Have you ever felt discriminated against or looked poorly on because of bipolar disorder?

Yes I have felt discriminated. While I was in hospital I was denied treatment by dieticians because I was in the psychiatric ward. But apparently I could access this treatment if I were on a medical ward. Yeah. Doesn’t make sense to me either.

I was also left for 8 FRIGGING HOURS in severe pain on a psychiatric ward, with the nurses calling every half hour for a doctor to assess me. When he finally came it was evident that I was ACTUALLY really sick (and not just making it up), and suddenly everyone was rushing around and I was having an emergency CT scan. I get that hospitals are busy places. But you don’t leave someone in severe abdominal pain, without assessment, for 8 HOURS, when even the nurses are extremely concerned. I wouldn’t have been left that long if I presented to the ED. And when I have been on medical wards and in severe pain I have been seen to very quickly. Good job I wasn’t having a heart attack, because I would have been dead by the time I got any help.

And yes I have felt that I have been looked poorly on because of bipolar disorder. I think a lot of it comes from a lack of understanding. But it still hurts.

9. Do you have any words of advice for people in the world suffering with bipolar disorder, or other mental illness?

Seek help when you need it. Don’t do what I did and struggle on until you are hiding in bushes and convinced the police are after you. Don’t be the bush girl!

Reach out. To anyone you can – friends, family, doctors, hospitals, help lines, bloggers, anyone. You are important. And you are not alone.

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.

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.

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.

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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?

Letter To Myself: On 2014

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Hey there, chick.

So it’s December, and at the closing of a year we like to do that thing where we reflect on what we have done, the achievements we have made, all the awesome stuff we did in 2014. You know the thing. Everyone does it.

But the thing is, 2014 wasn’t an awesome year. It wasn’t even quarter to an awesome year. It was downright miserable.

I know you had all these plans for 2014. You were going to start your PhD, you had been offered a scholarship that only 10 other university students received. You were going to present your research findings at a big interstate conference. After all these years of struggling you were finally making some money. You were going to have a baby. Or at least have fun trying. You were going to look at building a house. Everything seemed to be going right. 2014 was going to be your year.

Well, that didn’t happen.

I know that you look back, and you try, but you can’t see anything particularly positive about 2014. I mean, yeah, you’re alive. And yeah, the rest of your family is healthy. But everyone around you seems to be going on fancy holidays (or even unfancy holidays), building houses, having babies, getting promotions, actually being able to eat out at new restaurants without having to come home to barf. Living their lives, basically. And you’re sitting here now, typing in bed, with a fever, a queasy stomach, and a new script for Lithium, just like you have been for the past 11 months.

But you see, I think you’re looking at it all wrong.

Yeah. It was a shit year. But that doesn’t mean it was wasted.

You see, you learned a lot this year. You learned how to treat your body and your mind, and what happens if you ignore your health. You learned to put yourself first. You learned what changes are necessary for recovery. You learned what you are allergic to. You learned what medication and treatments work for you – and which ones don’t. You learned about your diagnoses. You learned the value of health. You learned who your true supporters are. You learned that your marriage can make it through the toughest of times, and you can still laugh together. You learned how resilient and strong your son is. You learned that stigma is still ever present, and this fuelled your passion to pursue stigma reduction research . But most importantly, you learned that YOU CAN DO IT. You can get through it. You can survive. Because you did.

You’ve come a long way, baby. Less than six months ago you were in a locked ward, periodically being shocked (as in electroshocked…although I’m sure you witnessed various shocking events as well. Actually, looking back. YOU were probably the one instigating the shocking events) and medicated. You were hallucinating. You couldn’t keep down, like, ANYTHING. You were being fed cans of formula. Dude, you could barely even walk. You were so sick.

And now, look! You can walk. You’re even exercising. You’ve withdrawn from fifteen of the seventeen medications that you were put on – a feat which is pretty damn amazing in so little time. Yeah, you have the odd vomit attack, but you can eat a whole lot more than cans of formula, chicken and rice. You’ve lost nearly 6kgs of your medication weight gain in the last three weeks.

And as for the other stuff…chill. You’ll get there. Stop trying to DO everything and BE everything when you’re barely out of hospital and still dealing with chronic illness. Give yourself a little breathing room.

The house? It will happen. You know you are an expert at making things happen. It will just take more time than expected. The baby? Relax! You’re 28 years old, the biological clock does not have to start ticking yet. So what if your kids have a big age gap? That’s life. And it totally saves on daycare fees (and quite possibly, sanity). The PhD? You’ll go back in January and it will work out or it won’t. If it doesn’t, if you are too unwell, you can ALWAYS go back to it in a few years time. You could work somewhere. Or you could become an awesome stay at home mum. It’ll work out. And however it works out will be for the best.

So cut yourself some slack. It was a crap year for sure. But you have picked yourself up, dusted yourself off and are ready to try again. And that perseverance, that determination, that positive attitude that I know you have at least SOME of the time. That’s what counts.

Life isn’t a competition, and it isn’t a race. You’ll get there, chick. It’s just been one helluva set back. But don’t forget –  EVERYBODY has their struggles.

2014 isn’t a year that should be commiserated. 2014 is a year that should be celebrated. Because you did it. We all did.


H

The Place I Chose To Die

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The other day we were driving back from my Immunology appointment at our local hospital , the same hospital where I was incarcerated for nine long weeks in The Dungeon. Anyway, we passed this little motel, the kind of establishment that is a mix between being super twee and super dodgy, and suddenly this chill spread through my body. I remembered the motel. But I couldn’t think of why.

I started to rack my brain for information. I was sure I had never stayed there. I mean, why would I want to stay in a slightly dodgy motel situated on a major road, in a slightly dodgy area of town, in my own city? I didn’t know anyone who had stayed there. I couldn’t recall ever visiting it for whatever reason. Then suddenly I broke through the ECT induced memory loss and the reason hit me like a tonne of bricks.

Of course. I thought. That was the place I chose to die.

You see, when I was admitted to the Dungeon I was suicidal. These feelings got worse and worse as time progressed. None of my meds were being absorbed due to the pesky autoimmune disease. Things were going rapidly downhill. I heard voices which told me to kill myself. I began to see people who followed me around and continually tried to convince me that my loved ones would be better off without me. That I was a burden. That if I REALLY wanted to help people I should get rid of the problem. Me.

Of course, when I expressed this to the medical staff they told me that the voices were wrong. But those voices…”The People” just used to ask me “Who ya gonna believe, Rachael? The doctor who has known you for five minutes? Or us, who have been with you for most of your life, know your intricacies and your family? We WANT to help you. Let us help you” These “people” were twisted but somehow they always made sense. And so they kind of grabbed hold of me.

So I began to make a plan. I managed to hack into the hospital university’s wi-fi through my own university. I searched the net and chose a place, this particular motel, to die. I decided how to do it. I had cash, a credit card, and a bus card. I was a voluntary patient on an open ward. I knew I could walk out at any moment and just never return.

Somehow, and I don’t recall how, around this time the doctors twigged that I was losing grip. I was placed on one-to-one supervision, and much to my frustration at the time, my plan was foiled. Thank god.

I find it very awkward to write about this. I feel an intense shame that I even THOUGHT about killing myself – much less making an elaborate plan. I feel like someone reading this is going to shout out “See! Unfit mother! Disgrace to society!” This is such a difficult topic to talk about.

Suicide is such a stigmatised issue. I mean, God, it’s a HORRIBLE issue. There’s no doubt about it. But it’s real. And it should be talked about.

The leading cause of death in Australians aged 15 to 44 is suicide. And, you know, that’s just looking at “successful” suicides (and wow, I hate that term). For every death around 30 people attempt to end their lives. This is MASSIVE issue. (see Lifeline for more horrifying statistics https://www.lifeline.org.au/About-Lifeline/Media-Centre/Suicide-Statistics-in-Australia/Suicide-Statistics)

But we don’t like to talk about it, because those who kill themselves, or try to kill themselves are selfish. They are weak willed. People who attempt suicide are looking for attention. They are all sorts of negative things that  definitely do not encourage those struggling with suicidality to seek help.

Let me just make something clear. When I was meticulously plotting my own death in hospital I was not looking for attention. Quite frankly, that was the last thing I wanted. Also logic doesn’t come into it when you are suicidal. Although it is true that “suicide is a permanent solution to a temporary problem”, in the depths of despair you don’t think that way. All of your thoughts become warped. I truly believed it was my best option, and would be kindest to those I loved. Obviously, I was also, and this is really important, very very sick.

People who are well generally do not want to kill themselves. There is this thing called human survival instinct. Against the odds, humans want to survive. That’s why people fight and fight through terrible adversity and illness. We WANT to live.

People who decide that the best option for them is suicide are generally very unwell and urgently need help. I truly believe that if the issue wasn’t so stigmatised, people may feel more able to ask for help when they need it, and perhaps unnecessary deaths could be prevented.

While I was in hospital I was afraid to tell the staff the extent of my suicidality. I was scared to tell them because the last time I felt suicidal I presented to the emergency department and was seen by a bored psychiatrist who said to me “You have a roof over your head. You have a husband. You have a baby. Why would you want to kill yourself?”

Yeah that made me feel great.

This type of experience, which is unfortunately, so very common for people with suicidal thoughts, just encourages stigma, and perpetuates the cycle. Different doctor, different place, but I was still scared of talking about how I felt.

I was really lucky though. I got the help I needed. I had a hospital keep me safe. Many other people aren’t this lucky. There are so many deaths out there that could be prevented.

But still, despite my feelings on stigma, I feel the shame. This is not something I will ever discuss, even with those closest to me. It feels like a dirty aspect of my life that I wish I could change, and this post feels like a confession.

I hope that one day I will be able to accept myself, and my experiences. I hope that I will learn to stop the self stigma. I hope that one day society will be able to talk about the issue that is killing so many people.

It’s Beginning to Feel a lot Like Stigma…..

So let’s just look past the fact that the fact that The Dungeon was housed in the hospital basement, and obviously hadn’t been the attention of any funding since circa 1976. One of the reasons I had *chosen* (I emphasise this, as I really didn’t have much of a choice), my local hospital instead of the state psychiatric facility was the hope that I could be treated for my medical problems as well as psychiatric issues. However, despite the fact that I was newly diagnosed with an autoimmune disease, the medical care I received as a psychiatric patient was appallingly neglectful. So neglectful in fact, that formal complaints were lodged by two of my loved ones, and an investigation was launched.

For starters, we were informed that the Dietetics department would not treat anyone from the psychiatric department.

What the actual crap?

Anorexia anyone? Bulimia? What about people whose mental illness deters them from eating? What about people who just plain FORGET to eat? The ones who don’t have money to eat? What about the vast body of research that links nutrition and mental health? Having spent five months in various institutions I can confidently say that I saw very few people in the grasp of mental illness who had optimal nutritional health.

This is an excerpt of my husbands complaint letter to the hospital.

“Rachael’s condition is food allergy related, and she also has a history of gluten intolerance, as such she should see a dietician. When this was requested on multiple occasions, we were informed that Dietetics would not see anyone from the psychiatric ward. I contacted the Department of Nutrition myself as they confirmed they could not see Rachael while she was a psychiatric inpatient, but could if she was on the Gastroenterology ward. This sounds a lot like stigma and discrimination.”

And this is the response we got.

“The original referral forwarded by the psychiatric registrar to Dietetics was received by the Department on 28th April, 2014. A follow up call alerted the registrar that Dietetics is not funded for patients staying in the psychiatric ward. …I would like to reassure you there is no discrimination of patients staying in the psychiatric ward and should a psychiatric patient deteriorate medically then they are admitted to the main hospital and afforded the same level as care and treatment as any other acutely unwell patient.”

So patients are only afforded the same level of care and treatment IF they are admitted to the main hospital? Sounds pretty fishy to me.

But Dietetics weren’t the only department unwilling to get their hands dirty on the psychiatric ward. The Gastroenterology department were exceedingly reluctant to take the five mile walk down to the ward and actually come and see me. At worst they “forgot”, sometimes they would phone the department instead of actually examining me, and at best they arrived…days late… telling me that my condition didn’t exist because they had never heard of it. (Ok so that only happened once. But SHEESH…dismissive much?!)

The surgical and investigative procedures I desperately needed were cancelled multiple times at the very last moment, and despite being an inpatient for nine weeks they were never actually conducted (the psychiatric team gave up and actually referred me to another hospital for the procedures). One night I was in unbearable abdominal pain and the nurses were extremely concerned about my wellbeing. Despite numerous calls to the out of hours doctor between 8:30 pm and midnight, he didn’t come and see me until 5:30 the next morning, and then it was all “OH MY GOD THIS COULD BE SERIOUS!”

Oh, I could talk for days about the poor medical treatment I was offered at that hospital.

Except for the psychiatric team. They were amazing.

But if there is one thing I have learned from this experience (my “field” research…according to The Hubster ;)), it’s that stigma is still alive. We think things have gotten so much better since One Flew over the Cuckoo’s Nest. But discrimination is still occurring, all around us, and in the most unlikely of places.

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D for Dungeon

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I sat there in shock, as a psychiatrist told me I would be admitted to hospital – voluntarily or otherwise. The hospital had a bed for me, and I was to get there as soon as possible.

Sure I’d been down, and sick…but…was I really that bad?

I was told I could choose between the psychiatric ward at my local hospital, or a ward in the states only stand alone public psychiatric facility. The state psychiatric facility houses a forensic unit which probably contributes to it’s bad reputation. Additionally, there had been reports of nurses being stabbed by patients, patients being killed by staff, successful suicides on site.

“Bedlam! Absolute bedlam!” I thought. Did I want to be be admitted to a hospital whose official title used to be the “Insane Asylum”. A hospital that resulted in the neighbouring suburb officially changing it’s name so it wouldn’t be affiliated with the facility. A hospital which, to my uneducated knowledge, only REALLY CRAZY people went to?  Hell, no! I wasn’t crazy. I just needed a few days to get my medication sorted out.

So “The Dungeon” it was.

I drove home, called my husband, and started packing. Ironically I already had a suitcase packed, for the national conference I was supposed to be speaking at the following week. I took out my high heels and hairspray and replaced them with pyjamas and a pillow. That  cut deep.

Later we arrived at the Emergency Department. I walked up to triage and whispered “I’m here to be admitted to the, um, psychiatric ward.” I felt so ashamed. Such a failure. This was self stigma at its finest. It’s funny how I prided myself in wanting to take action against mental illness stigma – even choosing a PhD in the topic. Yet when I became unwell I immediately stigmatised hospitals, my illness and myself.

I was kept in the emergency department for some hours. I answered question after question, about my oesinophilic gastroentoritis, my bipolar disorder and my state of mind. I was given a white gown and a hospital bracelet. Eventually a bored looking nurse came to transfer me to the ward.

“D’ya want a wheelchair?” She asked, snapping her gum.

“Oh, no thanks.” I answered.

“Ya sure? It’s a long walk.”

“No.” I said firmly. Actually I was sick, tired and weak from the physical illness. But I wasn’t going to let anyone take that last shred of dignity I had.

The nurse wasn’t kidding when she said it was a long walk. We walked and walked in an awkward silence for what seemed like forever. Up and down halls, through corridors. Finally we reached “D” block where the ward was located. But to my surprise we had to walk down a flight of stairs to access it.

THE WARD WAS IN THE HOSPITAL BASEMENT.

It got worse when we arrived. The ward was dark and dingy. The carpet tattered and stained. Walls were peeling and in need of a good lick of paint. There was a concrete courtyard in the middle of the ward, with a few lonely benches. The nurses station looked weather worn, and contained by a large glass window ( presumably to keep us crazies out). No one came to meet us. No one was at the nurses station. We sat on a shabby couch for ten minutes waiting for something to happen.

It took all my self restraint not to run screaming.

To put things in perspective, although the main hospital was old, it was clean, refurbished and friendly. The medical unit next door to the ward boasted leather sofas, plants and stylish decor. It was made abundantly clear the priority did not lie with mental health. (Thankfully, now, a new mental health unit is being built within the hospital – however this does not explain the lack of care The Dungeon was supplied over the past thirty or so years).

When a nurse finally arrived I was given a brief tour of the ward. Bedrooms, a dingy TV room with a plate full of apples individually wrapped in plastic (plan for licking each apple indiviudally: foiled), a locked medication room…and that was about it. I was shown to my room, which I shared with three other women, said my goodbye’s to The Hubster, then got into bed.

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This is just for a few days. I told myself. Just to get my medication sorted.

The next morning I overheard a man talking on the phone, trying to describe to his friend how to get to the psychiatric ward.

“You go down the main hallway…it’s like, forever, man. Walk until you reach a dead end. Then take the stairs. Down, not up. We ain’t got no higher ground here. We’re block D. D for Dungeon!” Then he laughed heartily.

D for Dungeon. I liked it.

Little did I know that The Dungeon would be my home for the next nine weeks.