Time to Bid Farewell

There have been a few times throughout the years where the privacy and anonymity of this blog has been compromised. Despite this, I’ve kept blogging and this blog is now in its seventh year. This time though….I don’t think I can any more. I was asked by the Head of OT at my university to come to a meeting today, and the Director of Fieldwork and someone from Counselling Services was also present. It was there I was informed that they had found and read this blog and now that they have, there is a duty of care to ensure I am medically fit to do fieldwork. Thus my next fieldwork placement is pending medical clearance from the doctor at the mental health clinic.

I feel so exposed. I have poured so much of me here that I have never shared in person. Yes, I’m the one who chose to blog publicly. It was never intended though for the eyes of those who know me personally, and I can say with certainty that I did not ever anticipate OT staff at my university would read it. I’m stunned and can’t quite believe this is actually happening. I’m horrified and mortified by how much my lecturers now know.

Over the years Behind the Facade has garnered a number of readers and followers and it’s been wonderful to connect with a whole community of mental health bloggers. Unfortunately a downside to the increased traffic is that you never know who may come across your blog, and who may choose to report you. First the hospital I was in a couple of years ago, and now the university. Who knows what’s next, and it’s just become too much of a risk. Though my archives have been made private for now, I may decide to make them public again in the future once I ensure I’ve eliminated all identifying information that could give me away.

So I guess it’s goodbye for now. Which is sad, as this blog has been an outlet for me in my worst times for the past few years. At the same time this blog has dropped in importance to me in relation to the other things I have in my life, and the mental health blogging community isn’t what it once was, so maybe now’s a time as good as ever.

Take care everyone and thank you for being a part of my journey xx

 

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.

Update

It’s been a long while since I’ve written here. There have been times when I’ve thought about writing a post, but it’s been so long that I didn’t know where to start.

Eating wise things have been up and down and it’s only been these past couple of days that I’ve been back on track. Once home straight out of hospital, I was still eating quite adequately and what I wanted. Slowly over time, I found myself cutting out more and more, and the list of foods I was afraid to eat became longer and longer. I then started bingeing and purging regularly, and it felt like my eating disorder was back where it was in 2009/2010. During this time I lost 2kg at most, I’ve never been one who’s been able to lose weight through purging. It was this that gave me the kick I needed to recover last time, and right now I’m in a similar position. It’s when I see the number on the scales go down that it spurs me on the want to keep restricting and take it even further, but when I’m maintaining my weight from bingeing and purging, I think to myself “What’s the point? I may as well be eating what I want when it’s a much more enjoyable and satisfying way to be maintaining my weight.” And so I put away my scales to reduce that temptation to weigh myself multiple times a day, have been trying to consume a balanced diet, and have refrained from bingeing and purging. It’s now day three that I’ve managed to stay on track without engaging in ED behaviours, hopefully it can stay that way. I confess though that I have weighed myself once, and it was reassuring to know that even if I eat without restricting I won’t balloon and gain 5kg overnight- my weight has remained within a kilo of 43kg, the weight I was discharged at.

I’ve mostly avoided seeing any health professionals and cancelled two appointments with doctors at A St. The psychologist from A St I saw a few times while in hospital also gave me a call asking me if I wanted further sessions with her. “No thanks,” I said. I did attend one appointment with my GP, but have not seen her since despite her telling me she wanted me to come in weekly because I just don’t think it’s necessary. I saw the community mental health nurse once, but only because she turned up at my house out of the blue one day after I missed a call from her and ignored her voicemail asking me to call her back. I received a letter in the mail informing me I have an appointment with a dietitian, but I’m not going to attend that either, especially if it’s the same dietitian I saw whilst an inpatient. After my experience of treatment there, I have no intention of attending any appointments at A St. I also received a letter from the group therapy place inviting me to start with their “Dealing with Depression” group, which just leaves me confused because the intention was always for me to do DBT. The depression group will use a CBT approach, which I’ve done before and do not find helpful at all. So I will have to follow up with them and enquire about this.

After having to defer half of my semester 1 units halfway through and the whole of semester 2, also halfway through, I return back to uni starting tomorrow. I’m not looking forward to it at all. Uni is a major trigger of stress for me. On top of that, because I’ve already completed half of both units before having to defer, I’m pretty much having to repeat all the work I put in last year. It feels so frustrating knowing that I attended all those classes and completed all that work last year just to have to start all over again this year. The majority of my friends of course have progressed to the next year, so I’m having to start the year with unfamiliar faces and a year group that have already had two years together to form their friendships. Oh, and last year I was also found guilty of General Misconduct so there’s also the concern that the lecturers who know about it think I’m a shit OT student who behaves unethically and in an unprofessional manner. Luckily that’s none of the lecturers I have this semester, but it will be the lecturers I have next semester. Oh, and the course coordinator who’s assisted me throughout the course when I’ve been admitted to hospital also knows, so I can’t go to her for help now because I’m too ashamed and afraid of what she thinks about me. So yes, I’m gearing up for a really fun year at uni. Provided I can actually finish the semester for once and pass.

Home from hospital

No matter how many times I go through this, being discharged always brings about a mix of emotions. Feeling glad to go home yet terrified at the same time. I was discharged yesterday afternoon. The first few days back home are always hard. Feelings of loneliness and everything being too much threaten to push down on me as I try to push them back.

I’ve reluctantly agreed to be referred to the group program. C, who runs the group program and is also my tutor at uni, came to see me briefly. One of the things she asked me is how I feel about her being someone who runs groups as well as my tutor. I wasn’t sure, and told her so. She said that although I may see her at the group place, I probably won’t have her as the actual group therapist because I did already know her. For the actual pre group assessment, someone else came to do that with me. It was explained that to do the DBT group, one must first complete two other groups before being assessed again for DBT. It was decided that I’d first do Introduction to Group Therapy then the Emotional Regulation group. There are two types of DBT groups on offer, DBT skills which runs for 16 weeks, and the full DBT program which runs for a year. All groups go for 2 hours weekly, with an additional 1 hour individual therapy session weekly for the full DBT. During her explanation of DBT, she told me that Marsha Linehan, the creator of DBT also had Borderline Personality Disorder. Is that supposed to make me feel better about it? When I asked her whether there is a waitlist for groups, she answered that sometimes there is, but they’re usually able to get through it pretty quickly. Given I was on the DBT waitlist for a year last time I was referred, it seemed at odds with my experience. I suspect what’s changed is this time I’ve had seven ODs resulting in ED treatment and five psych admissions under my belt plus I’m not seeing anyone on an outpatient basis. Last time I was referred I was still seeing a private psychiatrist, plus I’d only been in the ED twice and had one psych admission.

I’ve decided to go part time at uni, which means dropping out of two units this semester. In hindsight I should have done so at the beginning of the semester. Up to the point where I was hospitalised, I’d attended all classes and completed all the work, so it feels like such a shame that all that time and effort is going to waste. There are both pros and cons to going part time. The pros are that it means I will be less stressed and have more time to look after myself and do other things. The cons though are that obviously it will add more time to my degree and my friends will progress to the next year without me. I hate feeling left behind like this, while it seems everyone else my age has already graduated and gone on to get real jobs.

Full time uni

Sometimes I wonder whether or not I should do part time at uni. For the past two years I’ve been doing full time, and somehow or another, have managed to pass everything. But I also think of the struggles it took to get through it, and that it may be worth it to cut back a bit on the workload. So that I’m not so exhausted and not so stressed. So that I don’t get completely overwhelmed and panic when I have four assessment tasks all due in the same week. So that I have time to relax and do the things that I enjoy and keep me well. Because if I’m honest with myself, stress is a big trigger for me, and I’d like to stay well for as long as I can. And unlike last semester where I had a GP who could write me a letter when I needed extensions on assignments, I don’t even have a GP currently.

At the same time, I reason with myself that I got through the past two years, so I should be able to get through this year and next too. I don’t want to extend my time at uni for longer than I have to. I’ve already been at uni for so many years while friends and people I know have graduated on gone on to get real jobs. Other people’s opinions and approval also matter to me, and I’m afraid of what friends and family may think. That I should just continue on so I can finish as soon as possible or that I’m just being slack. Some people manage/d full time university and jobs with many hours (as my boyfriend has told me he did). I don’t want to feel inadequate for not even being able to manage what everyone else is able to.

Content

It’s been over a week now that I’ve moved out, and I’m beginning to settle in and even enjoy my new found freedom and independence. At first there were bumps, as I was pushed out of my comfort zone. I missed my home, where I had spent the majority of my life. There were tears as I wondered whether I could really cope and even contemplated picking up and going back. But now I’m glad I took the initiative to escape a situation I did not want to be in.

Moving to a new area, I went to see a new GP close by. He issued me the scripts I asked for; Pristiq and Seroquel, with enough repeats to last six months. Prior to this I had still been having only a week’s worth of medication dispensed to me at a time. Though it may be a little deceitful of me not to disclose this to the GP, I was tired of having to go to the pharmacy every week. Besides, I haven’t overdosed in 9 months and if I really wanted to, I could anyway. And for the moment, I don’t. Things are going well. I’ve finally moved out. I passed all my units at uni and will be going into my third year of occupational therapy in 2013. I have friends, and I even have a boyfriend now. The guy I’d been dating has become my boyfriend, in fact my first at the age of 21. And I too am his first, at the age of 25. For now, I am rather content.

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.

OT in mental health wards

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?

That feeling from self harm *PT*

One or two bad days I could probably handle. I could use distractions, for example, painting.

Image

And it did, to an extent, work. I’m obviously no artist but it was somewhat calming and therapeutic to express myself on canvas. In this case, it represented the tears I had cried over two days.

When it’s four bad days in a row though, forget it. Conflict with my father on top of a long uni day and stress over the workload and study resulted in an end to my two month streak of being self harm free. Two months would be a lot more impressive if I managed to resist the temptation despite having a rough ride. As it is, those two months went pretty well for me, and it was rare I felt the need to self harm. Unfortunately it only took four days of things not going so well for me to return to using old ways to cope.

After self harming, I feel so much better now. The sharp sting of the blade and the blood dripping down my leg both calmed me and helped release the tension I was feeling, distracting me from my emotions and tears. And now that I’m reminded of how damn good this feels, gosh I just want to do it again.

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.