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.
I’m undertaking fieldwork this year as part of my final year of studying occupational therapy. This means three blocks of seven week full time placements, with my first placement starting in May. We’re encouraged to speak to the fieldwork coordinator and/or our supervisor if we have a medical condition or disability that may impact our fieldwork. Part time pracs are also an option if we have a valid reason. Me being me, I’ve ignored all that and used my favourite strategy of avoidance, thinking “Nah, it’ll be fine.” I don’t want to think about what could happen if I don’t cope, nor do I want to put myself through the anxiety of speaking to the fieldwork coordinator or supervisor about this.
I’m starting to get worried though. I’ve been pretty depressed these past 3-4 weeks and with uni on, I’ve been finding it pretty hard. It’s so exhausting and difficult to get motivated, my brain feels fuzzy and there are times when I really don’t have the energy nor the desire to interact with other people and just want to be left alone. And that hasn’t even been full time uni; I was only at uni twice last week and so far this week have only been at uni for two days. If that’s difficult, I’m seriously questioning how I’m going to cope with being on fieldwork Monday to Friday, 8 hours a day.
I’m hoping and crossing all my fingers and toes that I don’t become unwell during fieldwork. But who knows what will happen, and what if I do? Especially with the stress and energy that it takes, which is a pretty big trigger. What if I end up in hospital while I’m meant to be on placement? I’ve been in hospital at least once a year since 2010 so even though I’d like to hope not, it may well be a possibility I do end up inpatient.
Part of me thinks that I should just suck it up, I don’t want to be making mountains out of molehills. At the same time, I’m questioning whether it would be better to be prepared now and have strategies for if things do go pear shaped, just in case. I really don’t know what to do :/
In our most recent Counselling and Group Work lecture, one of the things we learnt about was compassion fatigue. One aspect of it stuck out to me particularly, “Loss of compassion towards those who we once would have had compassion for (Figley, 1995).” It describes for me how I’ve been feeling gradually over the years. Obviously I’ve never been a professional counsellor, but online I’ve come across many people who have mental health issues.
It started off during my high school years with a self harm recovery online discussion board. Over three or so years I would visit the site every day, and totalled several thousand posts by responding to almost every thread. I then met both online and real life friends through the mental health volunteering I do, some of whom express their struggles through social media. I was also a peer moderator on the forums of an online mental health service. Then of course, there’s also blogging.
Once upon a time I would have had all the time in the world for people who were struggling. I would try my best to respond to almost everyone needing support with sympathy, encouragement or suggestions. These days however, I just can’t bring myself to do so. After being exposed to so many people’s issues over so many years, I’ve lost the patience and empathy I once had. I now avoid online forums altogether, I don’t read as many blogs as I did, and in the case of Twitter and Facebook where I can’t avoid it, I skip over those types of updates.
I guess it’s also a reflection of where I am at the moment. My sole source of support was once through a computer, but I’m past that stage of seeking help online now. I’m realising that sometimes in order for things to get better, you have to take action in your own life, and I find I get impatient when I see certain people who are stuck in a place of misery but keep making excuses when people offer them suggestions. I’ve learnt that going into hospital is not going to fix everything and it’s frustrating when there are some who think an inpatient admission will be the solution to all their issues.
I know that I’ve been that person too, so I don’t want to be cold and heartless towards people who are still at that stage. But somehow my compassion has waned and I don’t know how to get it back. Sometimes I wonder whether I should have spent less time trying to help people in my teens. Maybe then I wouldn’t have been burnt out before my career’s even begun.
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!
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.
It can be rather interesting listening to the things that OTs supposedly do in mental health wards/hospitals when I attend lectures. It’s a bit like, “Woah really, they actually DO STUFF??!” I should probably have a more positive attitude towards occupational therapy, especially as I’m studying to become an OT… I am only referring solely to OTs who work in psych wards though, as I do know that those in outpatient settings and rehab wards do a lot with their clients.Let’s face it, those of us who have been in psych wards possibly haven’t found occupational therapy to be all that helpful.
In the lecture yesterday, the OT used a person she had worked with previously as a case study, a young man who had been involuntarily admitted to hospital. According to her, an OT would do assessments with him, would do an interview and a Mental State Examination, establish a therapeutic relationship, set goals with the client, carry out interventions… Obviously I can’t claim to be aware of all the happenings within the ward, but I have very rarely seen OTs work one on one in such depth with inpatients. I thought all they did was conduct beading, painting,
bored board games or cooking activities! Oh, and possibly a few groups in between.
So me being the cynical and pedantic person I am when it comes to provision of mental health care, I had to go up and ask the lecturers about whether this actually happens. I gave examples of three of the wards I’ve been on, saying that I haven’t really seen that happen. “Is this from personal experience, family members or….” asked one of the lecturers. “Umm, personal experience,” I answered. I can’t quite remember all of what they said, but they agree that in acute inpatient wards it can be more group work as well
patronising, primary school level activities such as the art and sports ones. One of the lecturers explained that it also depends on how well the client is, as those who are on acute inpatient wards may not be ready to participate in the one to one actual occupational therapy intervention. Oh, and now all three lecturers who teach this unit recognise me. Heh, awkward.
I’m curious though, has anyone actually experienced proper occupational therapy in mental health, whether as an inpatient of outpatient, that was helpful?
I guess I knew that when I started studying occupational therapy, there would be certain topics that would be difficult in relation to mental health. This week’s lecture was on the topic of the Mental Health Act, followed by an OT from A St come as a guest lecturer. I decided not to attend this lecture, especially not at this time of the year when I’m just trying to push through. I figure if the Mental Health Act ever comes up in an exam, I’ll just say it’s when “You’re locked up and get your rights taken away from you.” That’s how doctors have put it to me when I’ve been threatened with it, surely it must be an acceptable answer then, right?
As for the OT from A St, well, I’m not particularly interested in anyone from A St at this point in time. Yeah, I’m generalising based on the two clinicians I’ve seen there, but oh well. Though I reckon the waiting room they have in the outpatients department is enough to put anyone off before they’ve even met a member of staff.
Because people with mental health issues are dangerous and all, glass is definitely needed to protect the reception staff from us.
The good news though is that because of my prior knowledge of issues related to mental health, certain topics are fairly easy for me to understand, and some of the content I already know. DSM IV, the difference between a hallucination and a delusion, the Mental Health Act and early intervention? I’m all over it! Doesn’t really make up for all that I don’t know in my three other units this semester though. Heh.
Sometimes I wonder whether I’m just better off by myself. Or better yet, myself with my dog. People however are just too hard and too complicated. People can get angry, they can get upset or they can decide they don’t like you very much. It may not be so bad for someone who can just brush it off and take it like it’s no big deal, but for me; I panic, I cry, I freak out and get the urge to self-destruct. That’s not even when it’s confirmed they’re peeved at me, it’s when I’ve interpreted their actions or what they’ve said in that way. Though I try to tell myself that it’s okay if not everyone likes me, it’s harder to truly convince myself of this. Then there’s the effort involved in keeping friends; thinking of things to talk about, making conversation, ensuring you appear bubbly and cheerful, putting in the effort to keep in contact, saying and doing the right things… Then what about when a relationship ends, and the feelings of hurt that come along with it?
This is why I think I do better when I’m not receiving treatment or therapy. Over the past few months I haven’t been seeing anyone at all, I currently don’t have a psychologist nor a psychiatrist. And I’ve been pretty stable. There have been times where therapy itself and the issues that arise in that relationship that have caused me to self harm or overdose.
Sometimes I question my studying to be an occupational therapist, such a people oriented career. One where you have to be confident and engaging and have the ability to build rapport and a therapeutic relationship with your clients. Clearly not my strongest abilities.
For one of our upcoming assignments, we have to find a child to observe typical development. Because I don’t know any, my only option really is to approach a child care or a school to ask whether I can observe a child there. The thought of having to do so provokes all this anxiety and so I keep avoiding and putting it off. And we have had a lot of these assignments where we had to find a child, have to find a workplace, have to find someone with a disability, find an elderly person…
A part of me just wants to declare this all too hard and pick up all my things, trek to some remote place and go declare myself a hermit. Life would be much simpler then.
Taking a mental health unit this semester in my occupational therapy course, I get the sense that there’s an “us and them” way of thinking. We’re the student health practitioners and they’re the people with mental health issues. Especially when talking about someone who is in a psych ward, described as “very, very unwell” by my tutor. I suspect there’s the belief that one of them couldn’t possibly be an OT student among us. Because if you have a mental health issue and have been hospitalised for it, you’re definitely not functional enough to be studying something like OT.
There may be a number of factors contributing to this. A proportion of students have possibly never been exposed to mental illness or people with mental illness before. It may be how the unit is taught. The examples and case studies used have tended to be rather stereotypical. A 48 year old man who appeared “dishevelled,” “rambled incoherently,” and “held a fixed, staring grin which was punctuated by odd facial grimacing,” a 67 year old man who is institutionalised and “has never been employed,” and a 30 year old woman with BPD who’s “participating in vocational rehabilitation as part of her OT program” (I assume this means she was also unemployed). And of course, all the examples involving a patient who’s been hospitalised have a psychotic illness. Because clearly, there are no other mental health issues for which people end up as an inpatient. Obviously there are people with mental health issues who do present in this manner. But there are also people who don’t, and I don’t think that message has been successfully received by those taking this unit.
It’s incredibly frustrating for me. I want an end to the beliefs of “us and them.” I want an end to the misconception that those with mental health issues cannot also be an OT or any other health professional. It almost makes me want to reveal to people my experiences with mental health issues to emphasise that yes, I have mental health issues but I’m not so different from all of them- in fact I blend in well with the rest of my cohort. I’ve had experiences in hospital where the news that I’m an OT student doesn’t receive the most positive reaction from the OTs there. That is what I want not to happen with the OTs of the future.
I had a meeting with the OT course coordinator/my gerontology tutor on Monday. Considering she’s been the contact person during all three hospitalisations in my over a year of studying OT, I was afraid of her thinking me too mental to do this course. After all, there’s been a couple of OTs I met in hospital who haven’t had the most positive response when they’ve found out I’m studying to become one of them. She was lovely though and accommodating and helpful. I don’t need something as drastic as being in hospital to ask for an extension on things if I’m struggling, she told me. Oh. But still, I’d feel guilty and hesitant in doing so. She also suggested getting an Access Plan done up through the Uni Disability Office, which is used to provide to lecturers and the such if I for example need an extension, without having to go into detail about my situation. If I did decide to go that route though, a letter from a medical practitioner or psychologist is required. Given my current, self-imposed situation of not having one, that poses a bit of a problem. And even if I did, I’m afraid of people thinking I’m taking advantage and using my mental health issues as an excuse. I was also asked by the course coordinator whether I have someone to talk to for support. “Err…I’m meant to be seeing someone,” I answered. Before I told them all to eff off. Heh.
Oh, and regarding the email I sent D? He hasn’t replied. Apparently if you tell someone to bugger off, there’s a good chance they will in fact bugger off. Hah, who could’ve known? I was curious about how he’d respond to my email, but never mind. I did receive a text message from my GP’s office this morning though informing me I missed their call and to please ring them back. I haven’t. Too much of a coward, I am. I know I’ll have to see her sooner or later for my meds, but I’m dreading being questioned on what the hell I’m doing by refusing to see a psychologist and psychiatrist and how I plan to stay safe and get well otherwise. Lol, beats me. Oh yeah, and the fact that the day straight after I saw her for an appointment, I went and overdosed on the meds she wrote me a script for. My bad :/ But, I am a pro at avoidance and if I keep putting the problem off, it’ll go away eventually, right?