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.

Job searching

I went for a job interview today for the position of a support worker. Since switching to part time at uni, I’ve been trying to find work. During the job interview I was told to fill out an application form. As well as the usual information, it also wanted to know whether I was being treated for an illness by a doctor, whether I’d been in hospital and whether I was taking any medication. For all these questions it directed the person to provide details if they ticked yes. I skipped over those questions and left it ’til last, while I debated with myself whether I should lie or not, and whether it would be illegal to do so. In the end I ticked that I’d not been in hospital. I did however write that I was on an antidepressant but left out that I was also on an antipsychotic. Unfortunately despite laws that prevent discrimination against those who have a mental health issue, I know that stigma does exist. Plus this is already my third job interview and I need a job. So I signed the statement declaring I had answered the questions truthfully and handed it in.

One year

So I don’t quite know how it happened…but it seems it has been an entire year since I’d last taken a trip to the emergency department, been admitted to hospital or even taken an overdose. Okay, so I know for most people they manage not to do that ever so it shouldn’t really be such an achievement, but for me it is. Those who’ve followed my journey on this blog for some time may recall a girl who was quite consumed with her mental health issues. Who, for the past three or so years prior, could not go more than four or five months without overdosing and ending up in the ED. To be honest I’m not even entirely sure how this year happened, but here I am.

That’s not to say I don’t still struggle. I most certainly do. There are times when I still contemplate overdosing and that ending it all may be easier. Certain things and situations still will trigger me. At times I still self harm. There are times when I miss and long to receive the support of a mental health professional, and feel envious of those who do. But all in all, compared to how I used to be, I think I’m going okay. I just hope it continues not just for one year, but for many, many years.

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 our state. 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.

Positive attitude to being an OT/MH consumer

One of the groups I sit on is the area mental health advisory group. Meetings are held monthly and I am one of the co-consumer representatives. The group is made up of two consumers, two carers, representatives from Consumer Advisory Groups, and staff representatives from both government and non-government services in the area of mental health.

During the most recent meeting this November, I happened to be sitting next to the Coordinator of Occupational Therapy of [Area] Mental Health Services. I had a conversation with her and told her I’m an occupational therapy student. She handed me her business card and said “If you ever want a job…!” That was before she found out I’ve only just finished second year and have actually not yet graduated though. Oh well. She also mentioned that she was recently as an OT conference and was just saying there that she thinks there should be more OTs who are also mental health consumers. I think I love you for saying that! She asked if there’s any more like me, who are also studying OT and also consumers. I said I knew of one other, but that it’s not something I’d really know (for obvious reasons). She replied that she’s sure there’s one in five, but it’s good to know that I, an OT student/consumer active in mental health, exist.

It’s just so refreshing to hear of someone like an OT coordinator of mental health services believe that someone with a lived experience of mental health issues can make a good OT. Especially in juxtaposition to my family and relatives, who on the contrary believe it’s a shameful secret to keep hidden and that no one will want to employ someone with mental health issues.

This, coupled with word on the street that the mental health service this particular OT coordinator is employed in is actually the best in the state, and I know where I will hope to get a job one day!

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. 😛

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.