BPD and Recovery

On Wednesday I attended a Youth Leadership in Mental Health Forum, in which I was one of the presenters. I spoke about using my lived experience of being hospitalised under the Mental Health Act for anorexia to advocate for eating disorder services and rights of consumers, and also being a student occupational therapist who has BPD. It’s always a bit of a rollercoaster of emotions when speaking about your own experiences. There’s the anxiety and lead up to the event, the initial high and sense of relief immediately afterwards, then the coming down and self-doubt about whether you actually did a good job or not. My emotions were complicated even further by the fact that eight other students from my OT course were in attendance, and now all eight know that I’ve been hospitalised involuntarily and have had anorexia and have BPD. Which I guess isn’t a huge deal given I am somewhat open about my mental health issues and most OT students are quite open minded. I got some nice feedback from a few of of the OT students, which was nice. Though it felt a bit awkward when I was sitting with them at lunch time and one person asked the group which speakers were their favourite. Me being sensitive and self-critical, when they mentioned other speakers who they enjoyed listening to, it made me think that compared to the other speakers I must be really substandard. Hmm.

One of the points I raised in my talk is the way that BPD has been taught in the OT course. BPD has tended to be painted in quite a negative light, without being very recovery focused. One of the OT students said that she also noticed this in class, and actually asked the tutor why it wasn’t more recovery focused. She said that the tutor told her it’s because “Most people with BPD don’t recover.” Umm, WHAT?!! Excuse me?! No, no, no, no, no! It was really quite upsetting to hear that my OT tutor has this belief and attitude, especially as I had raised the issue last year of the prognosis of those with BPD being portrayed as being very dire in class and with that had revealed to her that I myself have been diagnosed with BPD. It also made me very frustrated and angry. It’s so incorrect that people with BPD don’t recover. There is research that shows people with BPD can and do recover. One famous example is of course Marsha Linehan, the woman who created DBT. I’ve seen anecdotal evidence from people I know online who have recovered from BPD and I know even more who may still struggle with BPD, but are able to live a functional and meaningful life. It is so sad when I see mental health clinicians harbour this attitude and I just hope that those of us with BPD again and again prove them wrong.

The need for public inpatient eating disorder treatment

Today I attended a forum for consumers and carers to discuss the 10 Year Mental Health Services Plan, facilitated by the state Mental Health Commission. The four categories discussed were bed based services, community clinical services, community support services and prevention & promotion. There has been talk of this already, but one of the points I raised under bed based services was the need for a specialised inpatient eating disorders program for adults. Currently in my state there’s an inpatient eating disorders program at the children’s’ hospital for those under 16 years old, and for adults there’s one at a private hospital which is only accessible for those with private health insurance. In the public mental health system this is non existent, so you either get put in a general acute mental health unit or you get nothing.

This is problematic for a number of reasons. As we all know, the number of beds in psych wards are limited, and there’s almost always greater demand than there are beds available. Most beds are occupied by those who are suicidal, have psychotic or affective disorders. Even those who are suicidal sometimes get turned away. So if you have an eating disorder, unless you’re quite underweight or physically compromised, there’s slim chance you’ll get inpatient help for it. It seems as though EDs being treated in acute psych wards are so rare that nurses were quoted saying to me “Last time we had an eating disorder patient here….” It’s hard enough to eat and recover with supervision and inpatient care, I imagine it would be even harder to do so on an outpatient basis. It just doesn’t seem fair that it’s so hard to get that help if you’re in the public system.

Then there’s the care for when you are an inpatient. It’s better than nothing. But there are also many reasons why an acute psych unit isn’t appropriate. I get that it’s hard to cater for everyone, but often groups weren’t all that relevant. I know that at the private ED program, the groups offered are actually somewhat relevant to those with EDs. The focus while I was inpatient was all on just food and weight and there was nothing to help with the psychological side of it.

There were some staff members who did seem to have experience and knowledge of EDs, but then there were others who did not. I got nurses from one extreme, who told me I’d eventually be dead if I didn’t come to hospital, to the other extreme who asked me “Why are they so worried about you anyway?” and told me “I thought you’d be home by now.” I got the feeling some nurses wondered why I was in hospital and didn’t think I needed to be there. There were nurses who didn’t seem to get that it’s not that easy and would tell me “Just eat and put on the weight so you’ll get to go home, simple,” as if there wasn’t a battle going on in my head when it comes to doing so. When I was caught exercising and told to stop by the nurse, “Put on the weight so you can get out of hospital, then when you get home you can do what you want.” Lol, kinda defeats the purpose of being in hospital, but ooookay then.

There was even one nurse who asked me how I managed to lose weight on more than one occasion. Eventually I asked her “Why would you ask someone with an eating disorder that?” There was a particular conversation I remember she was having with my friend on the ward and myself. The nurse was talking about being envious that Asians are all so slim and and asked me how it is that Asians do stay slim and what they eat to do so. “Rice,” I answered. She laughed and said no, she’d probably gain weight if she ate rice. This conversation was upsetting to me as I feel like I’m meant to be thin because I’m Asian. Because I’m Asian, even at my lowest weight, by Asian standards it’s not even considered skinny- just average. And if I gain weight and go back to my highest weight of ~43kg, it’ll be considered fat for an Asian.

Then there are aspects that I, or rather my ED, likes that some staff aren’t experienced. Times when my Ensure Plus has ended up down the drain rather than down my oesophagus and into my stomach when I haven’t been watched or watched closely enough. Times when I’ve managed to hide and/or throw food in the bin. When at a mealtime a nurse has said, “I’m meant to watch you eat but I won’t, just makes sure you have everything you’re meant to have.” Lol, sure I will. It seems like some don’t realise how sneaky eating disorders can actually be. Before I got caught out, I managed to go a few times to weigh in wearing multiple items of clothing and hiding extra weights on me. A friend who’s been through the private eating disorders program couldn’t believe I’d gotten away with that- it seems that over there where they specifically treat EDs, they’re a lot more clued in to the tricks that people with EDs use. One morning when I’d been up early, I blatantly had two cups of coffee before weigh in and didn’t hide it, and they didn’t pick up on it or say anything and weighed me as usual.

One advantage I will say though of not being in a specialised eating disorders program is that I was the only one in the ward at the time being treated for an eating disorder. I worry that if I were to attend an eating disorder program, I’d be triggered by patients who were thinner than me, or who ate less than me. When you’re the only one in the place who has an ED, there is far less competition for who can be the thinnest, who can be the sickest, who can eat the least.

Review into the WA mental health system

Earlier this year I, together with a friend, met with Professor S to share our experiences with the mental health system. We were only two of the 891 people interviewed for this independent review into the mental health system in Western Australia. What prompted this review were suicides that occurred after a person interacted with A St (yes, the community mental health service I briefly attended) and did not get the help they needed. For example, one young woman completed suicide the day after being discharged from A St, despite attempting suicide on the ward only the day before. Her suicide attempt was dismissed by clinicians because she has a diagnosis of Borderline Personality Disorder.

The report was finally released this week and can be found here. Though I am appalled at how many gaps there are in the system and how horrendous some peoples’ experiences are, I can’t say I’m surprised either. It just makes me angry that so many people have been let down and continue to be. Three of my experiences are included in the Patients’ Experiences section of the report, and I’m not quite sure what to think about that. It feels really weird that many people, including the government, have read this report and may have read of what I told Professor S in the interview.

Apparently the government are taking action based on the recommendations that have come out of this report, but I can’t help being a bit cynical. After all, according to my friend, this report contains the same issues as a 1922 review. I guess I’ll believe it when I see it.

World Suicide Prevention Day

On Saturday evening I attended one of the many Lifeline Out of the Shadows walks for World Suicide Prevention Day (WSPD).

Out of the Shadows scarves and bandannas

 

Even my dog is sporting a bandanna in support of WSPD.

A group of about 36 ended up turning up and together we walked through town wearing the Out of the Shadows apparel and holding battery operated candles. We had small cards explaining about the walk and WSPD to hand out to passers-by to raise awareness.

One of the things we had was a reflection tree where we invited people to write small reflections or messages on a paper leaf and hang it up.

Reflection Tree

It was sad reading what some people had wrote. A few had lost people to suicide. Others wrote messages about needing to speak out, increase awareness of suicide and that there is help available. It made me feel rather sorrowful as it’s just so difficult to remember this sometimes. That it’s easy to read this, but so much harder to actually speak it aloud and tell someone that you’re feeling suicidal, hopeless and alone.

And even people who ask for help don’t necessarily get the help that they need and end up taking their life which is all the more devastating. I watched the 4corners story on youth suicide There’s No 3D in Heaven last night and could really relate to the frustration that some of these family and friends share about the lack of mental health services. It shouldn’t happen that those who require support don’t receive it.

The small circles of mental health consumer advocates

We had a guest lecturer this morning for neuropsych, a woman who has bipolar disorder. I thought her presentation was great; she told us a bit of her story, she emphasized that a person is not their diagnosis and that mental health issues should be treated on the same par as physical health issues. She was rather entertaining too, she told us that psychiatrists have all these letters following their name on name cards signifying their qualifications, so she thought she’d put letters in her name cards too. QBE she has, which stands for Qualified By Experience. Hah, now I have a qualification I could put next to my name too. :P

When she walked in the lecture theatre, I thought she seemed vaguely familiar, but I wasn’t entirely sure. I knew she wasn’t someone I’d met in hospital, but otherwise couldn’t think of where I’d have met her before. It’s only now at night that I realise I have actually met her, very briefly at a community music festival promoting mental health in 2011. We were both volunteers at this event, though for different organisations. I must say, I’m pretty impressed at my memory, given it was about 15 minutes we actually spoke to her, over a year ago! What really prompted my memory was an experience she had with stigma she shared with us today, which was the same story I heard from her last year. She told us of her psych hospital admissions in which she barely had any visitors nor any flowers, yet when she was in hospital for a physical concern, her room was filled to the brim with flowers. I could reflect and relate to her experience, looking back at my times in hospital. My family thought it needed to be kept hushed up, and during all four admissions I’ve received a total of one card or gift- flowers from a group of lovely friends when I spent my birthday in a psych ward last year.

Whenever we get told we’re getting a guest lecturer in neuropsych, I always wonder whether there would be a chance it’d be someone I knew or had come across before, whether as a patient 0r a mental health advocate. It’s funny that it’s now actually happened which shows how small the circles can be in the area of mental health! I’m glad anyhow it’s someone I met when I was in my mental health volunteer role and not as a patient.

Mental health screening in young children

A few days ago I read an article that reported that from July 1, three year olds will be screened for possible mental health problems as part of the normal developmental health checks conducted by GPs. It will cost $11 million over four years. There have been people who support this idea, as well as some criticisms and controversy surrounding the idea that three year olds will be labelled with mental illnesses under this scheme and that normal issues will be medicalised.

When I look at it, three years old does sound pretty young. Can you really pick up possible or early signs of mental health problems at that age? But at the same time, I wonder whether having help as a child if my problems had been picked up at about 4-6 years old, if it would have made a difference.

I had huge anxiety issues as a child. I was also very shy. I was terrified of attending school. My one and prominent memory of kindergarten was crying and vomiting because of the fear and anxiety I felt, and my father having to leave work to collect me. He was not happy at having to do so. I would’ve been 3-4 years old at the time.

My memories of year 1 involve more of the same sort of experiences. Crying almost every day for the first half of the year due to fear of school. Throwing up at home prior to leaving for school due to anxiety. Sobbing and begging to my parents to let me stay home instead. Having to endure being put into a situation five days of the week which induced terror and distress in me.

Years after I had left kindy, my mum bumped into one of the kindy teachers who’d had me as a student. Apparently I was rather memorable as she still recognised my mum. Based on my behaviour and what I was like then, the teacher asked my mother whether I still cried at school. This tells me that the extreme fear and anxiety I had was not typical of children of my age at the time. Yet I wasn’t given emotional support or help. Yes some young children may grow out of their issues it could then be argued mental health screening and early intervention at the age isn’t necessary, but what about those who don’t?

This kinda links in too with what I heard from a professor from Canada today talk about. I had the opportunity along with the other youth mental health organisation volunteers last night to hear Dr Shanker speak. He’s an expert in self-regulation in children. He spoke of how stress is anything that requires energy and some people just have a more sensitive nervous system. People then use up their energy resources trying to deal with the stress, and it can come out in externalising, internalising, cognitive, or risky behaviours. It will then affect the ability to self-regulate. Thus, it needs to be identified why the child is reacting in that way and try to calm the nervous system down. He also spoke of a bad back being no different to something like depression and anxiety, as both are derived from stress. My poor summary of what he said really doesn’t do it justice, but it was a very enlightening and fascinating talk, spoken with much clarity and was very engaging.

Busy volunteering, studying & being a mental

Life has been rather busy up until this point. Doing things I want to be doing, as well as things I not so much want to be doing. Among that which I want to be doing, I attended a youth mental health roundtable a week ago. The first half of the day was spent providing feedback on the National Report Card on Mental Health. The group of young people in the room were great, all had such a wealth of experience and ideas to share and it was so inspiring to be part of this discussion on mental health. A range of issues were brought up including mental health services, mental health in Aboriginal and rural communities, mental health in schools, CALD issues, and others. The second half of the day was dedicated to providing feedback on the new youth mental health service that is currently in the process of being built. This new services is aimed at young people who are at ultra high risk of psychosis or emerging Borderline Personality Disorder. There were a couple of questions I brought up, BPD being something I feel rather strongly about given the prejudice that is often held against those with BPD, even when they’re in a vast amount of emotional pain and in need of support. One of my questions was regarding the six month limitation on this service. I wanted to know how six months is adequate for an illness such as BPD which often has a lot of underlying issues, and how they were going to deal with the issues of rejection and abandonment when the relationship is terminated at the conclusion of those six months. The answer I got is that their service is a starting point before going onto another service is required, which is fair enough, and that often if you’re clear with the young person from the beginning that at the end of six months they’ll have to move on, it will help so that the person doesn’t feel rejected. Is this usually the case? I don’t know. But I know for me, it’s part of the reason why I’m reluctant to see psychologists again. Because it just hurts too much when I’ve started to trust someone, they too leave.

Yesterday I was there while a conversation took place between the people who are setting up this new service. They were trying to work out how exactly ’emerging’ BPD is going to be defined for eligibility for their service. Another eligibility criteria is that someone has to have had a decline in their functioning. I asked whether someone who say self harms and are showing signs of BPD but are functioning fine in work/school/uni, whether they’d access this service. And the answer was no, they’d probably be accessing another service. It was interesting to me because there are definitions of mental illness that say it must impact on a person’s functioning. When I look at myself however, my daily functioning is very rarely impacted. I have never missed a lab class of uni due to feeling too depressed or anxious. When I’ve made a commitment to my volunteer work or going out with friends, I don’t think I’ve ever bailed because I was feeling too emotionally awful or anxious. The only time I have failed to attend these things is when I’ve been in hospital. Despite ending up in hospital at least once every semester that I’ve studied OT, I have not failed any classes and passed them all the first time round. So based on functioning, you could say I don’t have any serious mental health issues at all. But it’s my coping mechanisms and emotional reactions that get the better of me. Because things that most people are able to cope with in everyday life, I react by having a meltdown and overdosing. So it’s like functioning, functioning, functioning….then have a meltdown and crisis.

I finished my one and last exam on Wednesday. Though marks haven’t been released yet, I’m almost entirely confident I passed all four units. I’m thrilled because in three semesters of OT I’ve managed to pass three semester’s worth of units, whereas when I was studying pharmacy, in three semesters I hadn’t even managed to pass a full semester’s worth of units. Not to mention I’ve been inpatient in psych wards once per semester for all three semesters too during my OT course. I also went out with a group of my OT friends for lunch after we finished our exam, the first time ever I’ve gone out with friends from OT. Yes, after 1.5 years of studying in this course I finally have an actual group of friends that I belong to.

I’ve still been collecting my meds weekly from the pharmacy. An annoyance when I have to stop by on my way home from Uni on Fridays, an even bigger annoyance when I don’t have uni and have to go especially just to pick up meds. Using public transport. To make things worse, a girl I went to school with who was in my year and so we know each other, works at the pharmacy. I see her every Friday when I go get my weekly meds supply. Awkward. And so today being Friday, I went and was informed my box of Seroquel has run out and they’ll have to dispense a new script for me. Fine. Then the pharmacist asks me, rather loudly, “WFH, has the doctor lowered your dose of SEROQUEL?” Just announce to the whole pharmacy that I’m a mental, that’s fine… Turns our my GP faxed a script for two 25mg Seroquel tablets per night which I used to be on, instead of the correct one 50mg Seroquel XR tablet a night which I’ve been on since they changed it when I was in hospital. So it’s back to the GP I have to go, and there goes my plan to avoid her out the window. Not too keen to answer her probable questions about my not wanting to see the psychologist at A St. My answer if she asks what I plan to do in terms of getting help? Nothing. It’s my life and I choose and plan to do nothing.

I’m on break until Uni starts up again on July 9th and I have mixed feelings about this break. On one hand, it’s great to not have to do any study or uni work. On the other hand, it gives me quite a bit of spare time, too much spare time to dwell on how lonely I feel. It’s hard when I see people going out with their friends and I’m alone at home, reminded that I don’t really have people to hang out with. It feels pretty awful when it seems like everyone else has these wonderful close friendships and all these people to spend time with, and I don’t. I am headed to Melbourne and Sydney in a week though. Melbourne just for a couple of days to holiday as I’ve never been before, and Sydney both for a bit of a holiday and the Young Minds Conference, which I obtained a free ticket to.