Won’t get well: Trying to understand medical non-compliance

How many unfinished prescriptions are left in your medicine box?

How many unfinished prescriptions are left in your medicine box?

This post was born out of discussions with my doctor friends, who frequently struggle with “revolving door” patients. The kind of people you discharge knowing you’ll be seeing them in a few weeks, maybe even a few days. Individuals who  grudgingly accept treatment, as though intent on remaining sick. Those who fail to follow medical advice, despite the pain and risks they then live with. Questions arise as to whether we should treat these patients at all, whether the resources are justified when they seem determined not to look after their own health.

“Non-compliance” has a very punitive ring to it. We comply with authorities, with court orders and sanctions. It suggests the existence of an external control and an absence of choice. The somewhat softer “non-adherence” is perhaps something all of us can relate to. Which amongst us have not been entirely adherent to medical advice? Perhaps we failed to complete a course of medicine, drank whilst on antibiotics or missed a few doses. This kind of non-compliance is one of the highest rated frustrations for doctors, but is very common.

Who is more likely to be non-compliant?

In a review of 102 papers, Jin, Sklar, Oh and Li (2008) found that those who do not comply are more likely to be male, younger, single, to have a lower level of education. Those who have a cognitive impairment (e.g. dementia), a mood disorder or use substances were also found to be more likely to be non-compliant. The complexity of treatment regime, level of medical knowledge, quality of relationship with the prescriber, and stigma attached with the treatment were also highlighted. However, it may not always be as clear “why” an individual is non-compliant, and attention needs to be given to the paradoxical nature of the behaviour.

Beliefs impacting on compliance

Research suggests that cognitive factors may lie behind this “everyday” non-compliance: faulty and inaccurate beliefs that guide behaviour. Patients may believe that the treatment will be ineffective or there will be minimal consequences to non-adherence. They may believe that they are not “truly” ill or that the treatment will impact them negatively. They may believe that the disease is uncontrollable or have religious beliefs regarding illness, or that an alternative method that will help them more.

Readiness to change

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Thinking of the “stages of change” model, many patients may still be at the ‘pre-contemplation’ stage in relation to changing their behaviour. They will need support, education and counselling to progress to a point where they feel capable of change. When medical emergency forces a patient to receive medical treatment, they may still not be ready to engage in change, despite professionals escalating the situation on their behalf.

A good relationship with a professional will be needed to open up a dialogue in which it may become apparent that patients hold these beliefs. In many cases education may be enough to shift the belief, but this will need to be provided in a respectful manner so it can be well received. Motivational interviewing techniques have been used successfully to help a patient to identify discrepancies between their behaviour and their goals.

But what of people with more “severe” forms of non-compliance? Those who seem to actively avoid treatment and seem to exacerbate their condition?

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Wounded healer or undercover crazy? Coming out (quietly)

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Back in 2013 I wrote a piece on this blog about navigating professional and personal identities online, particularly in relation to being a healthcare professional. Reading it now, so much of it still feels as relevant to me as it did then. Since I qualified last year I decided that I’d “open” up my twitter and writing and link it with my “real” name. My main rationale for doing this was that I’d taken a job outside of the NHS in a new geographical area. Without the structure of university and attending NHS professionals meetings I felt quite cut off from the rest of the psychology and healthcare world. I wondered if in continuing to stay “pseudo-anonymous” limited opportunities to connect with other professionals and also possibilities for doing more writing and public engagement.

My main hesitation about being “out” and open is that I’ve written in detail about my own life experiences, which include experiences of using mental health services. I have concerns about how my own disclosures might be judged by future employers, colleagues and therapy clients, and the impact of this. It’s hard to work out whether this is a realistic concern or my own internalised stigma. I don’t feel that my experiences limit my ability to do my job well (though I worry that others may think this). I feel well enough to do my job and I have a clear plan for what I would do if this were to change.

Going back through my blog I’ve taken out only a few pieces. These were the stories that contained information about other people in my life that would be made more identifiable. Whilst I’ve chosen to be more open, I respect others’ privacy and it isn’t for me to share their story for them without their consent.

When I first started my blog I was particularly looking for a space to marry up my experiences as a service-user and as a professional. It’s been a useful reflective space and I’ve really valued the conversations with others through this, particularly other professionals who write about their lived experience (PsychConfessions , CBTwithAlieshia, Giant Fossilized Armadillo and pd2oT) and mental health activists who write in candid detail to raise awareness (e.g. BipolarBlogger and Ilona Burton). Just before I qualified I took part in a research study about psychologists drawing on their lived experiences of distress (I hope this will be published and I’ll get a good quote in!). It was a powerful experience taking part, it really brought together all of my experiences as I was transitioning from trainee to qualified clinical psychologist. I also applied for a post where one of the “desired criteria” was experience of using mental health services. This sent a very strong message that my experience was valued, but I still felt my heart beating heavily in my chest as I typed a vague line in my application about drawing on my experience to consider client expectations and barriers to engagement! It wasn’t raised in the interview, but I felt glad I had taken up the opportunity.

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Halloween and representations of mental health

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‘Mental Patient’ costume. This is clearly inspired by Silence of the Lambs’ Hannibal Lecter. Does that make it ok? And who is to blame for the offense? The author of the book? The director of the film? Or the costume maker?

As Halloween looms closer, I’ve noticed a considerable number of stories appearing in my time-line about ‘scary mental illness’ being used in Halloween media. The best known examples being the campaign for Asda and Tesco to take down ‘mental patient’ costumes, and the current debate over Thorpe Park’s ‘Asylum‘.

Mental health service users  have been debating these issues online with strong opinions on both sides. On the anti-campaign are claims that these images of people with mental health problems as frightening are deeply stigmatising and build into the damaging discrimination that people experience. Mental health charity Mind encouraged followers to tweet pictures of themselves to who what a real ‘mental patient’ outfit would look like.

On the other side have been voices (including those of people who have experience of mental health problems) saying that these costumes and attractions are clearly based on horror movie imagery rather than real mental illness and that the campaign has drawn further attention to the attractions and made people with mental health problems appear obsessive and joyless.

I haven’t fully formed an opinion on either side. The costumes are indeed insensitive, though they wouldn’t be the only ones out there. Though I don’t necessarily support it, fancy dress is often very un-PC. Cultural appropriation is rife (think red indian and geisha costumes), as is sexism. When it comes to Halloween, I wonder how pagans/wiccans and people with facial disfigurements feel about the other ‘scary’ costumes out on sale? Everyone has the right to be offended and express their view, but if we take down these ‘patient’ costumes, we should probably do away with many of the others also.

The idea of someone with mental health problems as scary wasn’t invented by costume makers. We have a long history of characters in horror films who are portrayed as suffering for mental illness, often shown as the ‘motive’ for their behaviour. The ‘psycho-killer’ is a common stereotype. These films are very popular and the incredibly negative portrayal of mental illness has seemingly gone unchallenged. Often these ‘mental patient’ costumes seem to be based on characters like Silence of the Lambs‘ Hannibal Lecter.

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Mental illness and horror – a popular combination?

An abandoned asylum is often a horror movie setting (think House on Haunted Hill). Asylums have an awful history, and rightfully so. The patients who lived in these asylums were subjected to awful treatment, and there’s a reason why these places were shut down. Some horror films have used this history, portraying cruel doctors and the kinds of horrific ‘treatment’ that was given out. Unfortunately some have preferred to focus on the patients themselves, and characterised them as frightening characters. Mental health problems can cause someone to act in a way that others might find hard to understand and frightening, but these media characterisations of scary patients surely does nothing to encourage understanding.

In one of Thorpe Park’s responses to the campaign they commented that the ‘Asylum’ attraction has been running for 8 years without complaint, and has been popularly attended. Why is it that uproar is only gathering now? Similarly, the ‘mental patient’ costumes are not new this year. It may be that mental health campaigners feel more empowered to take a stand and take on companies profiting from these negative stereotypes. While I hope this is the case, I think we need to consider why we’ve let negative portrayals of mental illness go so unchallenged for so long. We’re appalled by the straight-jacketed costumes but still flock to the films that inspired them. These costumes are in bad taste and I wouldn’t like to belittle the hurt they’ve caused to an already stigmatised group, but I think amidst the uproar surrounding them we need to think about where these ideas originate and whether taking down the costumes and attractions will really get to the heart of the stereotypes and stigma around mental health problems.

Being a Healthcare Assistant : Value & Experience

The term ‘healthcare assistant’ (HCA), ‘support worker’, nursing assistant and ‘care worker’ (and others) are used to describe staff would work to meet the care needs of patients in health and social care settings such as hospitals and residential homes. The job does not usually require a qualification and involves tasks such as assisting with washing, dressing, toileting and feeding, as well as sometimes engaging in other activities and daily tasks with service-users. It’s not a well-paid job, the hours are long and the work often tiring and repetitive  Sometimes agencies may provide staff, meaning that different staff will work in a setting each day, although many sites also have permanent staff.

Is this people’s image of care workers? Image from Parliament.uk

Care-workers have had some bad press in recent years. Winterbourne View shed some light on how staff caring for vulnerable adults are often lacking in training and supervision, and how in some cases these enables abuse to go undetected. Following the Stafford Inquiry, it was recommended that nurses spend additional time working as healthcare assistants to help them to be more compassionate and in touch with the ‘fundamentals of patient care’. Nurses have been very critical of this proposal but personally, I think all staff in healthcare would benefit from spending some time working ‘on the front-line’. Working in this kind of role can give you a greater understanding of the needs of the patients and a sense of the work of the people who provide the majority of the care for our country’s most disabled, unwell and vulnerable.

My first job out of university was was a healthcare assistant at a private hospital for adults with long-term and severe mental health problems, often with additional physical health needs and ‘challenging behaviour’. I was bright-eyed and interested in mental health, but I don’t think I had a clue about what the job might involve. I’d never cared for someone else before, unless you count babysitting and tending to hungover friends. It wasn’t long into my first day that I was filled with an over-powering urge to leave and never return. The building was over warm and was filled with a strong smell of cleaning product not quite masking that of human waste. I could hear yelling and residents walked the corridor slowly, giving me unnerving stares. The prospect of helping an aggressive man change his incontinence pad was somewhat terrifying.

The work was eye-opening and exhausting. I didn’t always like working there, but I still could my time at the hospital as one of my most valuable working experiences, and it has really shaped my perspective and professional identity today.

Getting to really know people. When you spend all day with someone, from helping them get out of bed and get washed, right through to the end of the day, you get a sense of their life that just isn’t possible in a once weekly session. I enjoyed the times I had a chance to sit and talk to residents about their lives, or to do activities with them. I liked the continuity I had with people, that I could get to know them, and them me. It was frustrating when other professionals would come in and talk as if they really know someone, when they’d barely spent any time with them.

Disgust, dignity and disability. As far as a first job went, there was far more contact with bodily fluids than I was expecting. But I think it significantly raised my threshold for disgust. It stopped really bothering me. And I hope that if I need it, there’s someone around to help clean me up too! What I found far harder was having so much exposure to how disabled and narrow the lives of the residents could be. Often there wasn’t a plan for residents to get better or leave, and many had deteriorating conditions such as dementia. One of the worst jobs I had was assisting a woman with Huntington’s who was progressively losing control of the muscles of her body, to smoke a cigarette. She wasn’t really able to suck and inhale, so she had the cigarette attached to a tube-like device, the inside of which was  coated in a black tarry substance, saliva and dirt from where she had dropped it. This device frustrated her, so she’d try and hold the cigarette, but her fingers were too weak and she’d drop it, burning herself. When I tried to take the cigarette and return it to the tube she’d yell and swipe at me. She was slowly dying but all she wanted was a smoke, and my job was to help her do it. It felt really harrowing, and it made me think about how small all of the things in my life that bother me are.

Lack of support. I had very little relevant experience, other than a psychology degree (which doesn’t prepare you much for working with a real-life person) and I received minimal training. I had a few days learning how to restrain someone and other staff quickly showed me how to wash, feed and transfer particular residents. And then they left me to it. Getting everyone out of bed, washed and breakfasted took me pretty much up to lunch, when it was almost time to start all over again. Nurses tended to stick in the office or the pharmacy (I know not all nurses do this, but it was mostly the case where I worked) and weren’t around when I needed their help, I was often left on my own or with other HCAs who on the whole had pretty low morale. The treatment I received from other professionals was often condescending and dismissive, I felt like the lowest rung in the site. I received minimal supervision, and when difficult or upsetting things happened at work there was no one to talk to about the experience. Apparently there’s a high-turnover for staff in these roles and I’m not surprised, though it must be very difficult for residents to see staff they get close to continually leaving and being replaced with new faces. The high demands placed on me to support basic needs such as washing and toileting left little time to go beyond this and engage in more personal and creative work with residents. I rarely even had time to look at people’s files, even when they had a substantial risk history, as if it wasn’t important for me to know much about the person I engaged so intimately with.

Many care-workers probably have better experiences than I did, the hospital I worked for definitely had some problems, but having talked to others I don’t think my experiences were all that unusual. HCAs and similar staff do the jobs that the rest of us are glad we don’t have to do, and receive little recognition for it. It’s a tough job and not everyone can do it. I’ve met staff who were truly brilliant, but the lack of  respect (not to mention pay) you receive on the job does limit how likely it is that skilled staff will stay in a post. These people need to be celebrated and given further training so they can develop in the role. The residents and patients deserve better. Though I found the job a useful experience and it helped me get further posts, I probably wasn’t the right person to be providing that sort of care to people with such particular needs. I tried to do my best, but I wasn’t experienced.

Now I’ve moved up a few pay-bands and I don’t have to clean up anyone’s vomit and it’s been a long time since anyone hit me at work. But my experience on the ward is still with me, and I often find myself drawing on it and using it in examples at work. It’s definitely impacted on how I think about healthcare, other staff and my own professional responsibilities. Though the work was tough, I definitely don’t regret doing it. Sometimes I even miss being in that community environment and having more time with patients (it seems as I develop more skills I get less and less time with the people I’m learning to support). I don’t think being a healthcare assistant/support worker/similar should be seen as a ‘lowly’ job that’s beneath the other professions. It’s not a job just anyone could do, and it takes a special kind of person to do it well. Unfortunately this isn’t reflected in the pay and  training attention that people in this roles often receive. For someone thinking of starting a career in healthcare I think you couldn’t have a better starting point, and you’d actually be at a disadvantage for skipping over it. It’s an enriching and insightful experience that I know I come back to again and again.

 

Electronic Selves – Professional and Personal Identity Online

Peter Steiner’s famous New Yorker cartoon

I blog and use twitter in a pseudo-anonymous fashion. By that I mean that I don’t put my full name on either account. I haven’t gone to great lengths to conceal my identity, but I do feel an advantage to not being too identifiable on the internet. Recently the GMC stated that doctors on twitter should use their real names, which sparked some debate about the kind of candid and honest communication that this might shut down. It’s said that nothing on the internet is truly private and I do have anxieties that my personal life and writing might somehow impact negatively on my career and clinical work. On the same hand, I wonder what opportunities I cut off by maintaining an alias. I’ve been having a chat about this with some friends who also blog about personal experiences, both as professionals and service-users.

Self as a writer. I love writing. Perhaps there’s something somewhat exhibitionist about writing about my life on the internet for strangers to read, but my writing style has always drawn on my own experiences, often mixed in with more factual information. I do enjoy sharing my own stories, it’s the only thing I can really claim any expertise in and makes my writing something unique and my own. My writing serves as a space for my own reflection, but I also hope to inform other people and draw attention to topics that I feel are important and lend my voice to debate. So for me writing is personal, but also a form of communication, providing a resource to others and a form of activism. It’s also something I enjoy and an outlet from my day-job, which can be quite stressful! Many online writers, especially those who write candidly about more controversial topics (think Belle du Jour) use an alias, it can be less restrictive and give the freedom to write without worries about how it might impact the rest of your life. Blogger LandslideGirl is a psychology student who also has experience of mental health problems.She mentioned the freedom that comes from writing anonymously, which I definitely agree with, “My twitter account is something I use in both a personal and academic sense.  On twitter I identify myself as both a psychology student and a person with mental health issues, although again I don’t have my real name on it.  There are several people from ‘real life’ who follow me, but it allows me a greater degree of freedom than facebook which is so closely linked to my identity.  I find that on twitter I can have the best of both worlds. “ 

Sharing personal experiences – self as patient (and as regular human being) – I write about my general life but something I’ve used a lot is my experiences with mental health problems and using mental health services. Reflecting on these times helps me to understand and learn from them, but I also think I can have a role in helping other people to understand what it can be like to have a mental health problem and be in treatment, for other people who might identify with me and conveying messages about hope, recovery and growth. I also have the benefit that I’m also a mental health professional, so in some ways I can talk both ‘languages’ and I can talk about my experiences in a way that’s accessible to the people who might work with someone like me. I guess I’d hope to foster understanding on both sides.

LSG uses her blog in a similar manner, I wanted my landslidegirl blog to be somewhere that I could write about the things that effect me, and tell my backstory, from a more reasoned perspective, rather than a daily update… I haven’t linked my blog to my personal identity, although if someone read it who already knew me they would work out that it was me without too much difficulty.” There can be something quite therapeutic about sharing experiences in such an open forum, but we’re both aware of the possible consequences of this.

Rufus May – Out and Proud

There are some mental health professionals who have spoken openly about their own experiences of mental health problems, Rufus May and Marsha Linehan are two good examples of this. They’ve been praised for their honesty, but it is noticeable that both ‘came out’ at a point when they were quite established and respected in their careers. I don’t have that luxury, I’m still getting on the ladder and I don’t know how people who might employ and work with me might respond to my disclosures. Similarly, I’m encouraged not to reveal a lot of personal informations to the clients I see in practice. It depends on the model of therapy you work with, but generally self-disclosure is considered to often be unhelpful to the therapeutic relationship and process. I don’t know how other professionals who have a lot of personal information about them in the public domain manage this, but I am wary that knowing details about my experiences might be detrimental to my clinical work. I have tight privacy settings on my Facebook to limit colleagues and clients seeing pictures of me falling over drunk in fancy-dress (not that I do that, obviously…).

Lyssa is a family and marriage therapist who blogs. Her blog is a personal one (often very personal, she recently shared her engagement photos and her erm… reflections on her bowel movements). However, she does mention her job, although not in the same detail that I do. mentioned this also, “In terms of personal disclosure with clients, I like to think that I am comfortable being fairly open with my clients when they ask me directly about my life.  I like Yalom’s take on being honest and open with clients…..because change is all about the therapeutic relationship, and I think being genuine can only help that (as long as the main focus stays on the client, of course). I suppose if a client found my blog and then brought it up in session, I might be embarrassed, depending on what the client thinks about it all.  At the end of the day, it’s just me, and my clients can take that or leave it.”

Talking about work – self as professional. Another side of my writing is often writing about issues and ideas that come to me from my clinical work, things that strike me as interesting, things that make me laugh and sometimes things that make me really sad. I’ll sometimes use examples from the people I see in my work. I am mindful of confidentiality and I don’t use names or identifying details, but I sometimes mention the type of problems I’m working with or things people have said to me. Given I don’t have my name or where I work linked to any of my accounts, I don’t think it’s possible to actually identify individuals. A lot of the people who follow me on twitter and some of my readers seem quite interested in what my day-to-day life as a mental health professional involves and I hope to give a sense of that. I’ve read quite a few other anonymous twitters and blogs that similarly offer snapshots of a professional’s life. If I was identifiable online, I’d need to really edit my online content to remove these references. Similarly references to colleagues. Sometimes I write about controversial and contentious topics, and I often take a critical view on current mental healthcare. If I was more identifiable online I wonder if there would be any issues with expressing views online that might not be in line with the views of the organisations I am involves in (such as the NHS, my university). At the same time, whilst my writing isn’t identifiable, it limits my ability to share it within my professional and academic network. LSG also mentioned fearing negative outcomes that come from writing candidly (and sometimes negatively) about the systems we work within, “During the placement year of my degree I worked in a clinical psychology service and I faced considerable stigma created by the clinical team.  This was something that I felt strongly agrieved about and wanted to write about, but I decided not to, on the off chance that somehow it got back to them.  So yes I am careful about what I write.  I’m more conscious than ever of keeping my comments quite general and not naming names.” 

Lyssa does mention her job, although not in the same detail that I do. I asked her about how she manages this professional/personal identity boundary, “My colleagues don’t know that I blog. I try to keep my personal and professional lives separate as much as possible….while still blogging about personal stuff. For instance, I post really personal stuff on Facebook but, as a rule, I do not have Facebook friends who are current coworkers of mine. And yes, I do use pictures of myself on my blog, but I try not to describe exactly where I live and I don’t use my full name, in hopes that my blog will be less searchable by people who may know me in the real world (like clients).

Real-life’ self – academic discourse. In my work life, I’ve published a paper and hope to put more out, in terms of research papers and other professional comment. This work has my full name on, the same one I use at work, so if colleagues and clients were to google me, this is what they might come up with (and hopefully not pictures of me drunk on my birthday). Although what they’d find would be very little in comparison to the amount I’ve written on my blog, and online conversations I’ve had with service-users, activists and professionals (both anonymous and those that identify themselves online) and other campaigning. But my ‘real-life’ identity probably packs more clout, I can communicate through a wide professional network and have the associated prestige and respectability of the organisations I’m a part of. My opinion perhaps carries more weight than that of an anonymous blogger and maybe I’m able to have more impact in this role. But this identity remains unconnected with articles I’ve written about sex and pornography, more frivolous pieces on lingerie and fashion and twitter rants.

So in addition to the roles I juggle at work, I carry about these different ‘selves’ with me. They start to blur into each other as I have real-life friends who read my blog and follow me on twitter, I have fellow trainees (who straddle a blurry area between colleague and friend) on my Facebook where I sometimes post my writing, not to mention photos. On my twitter I communicate with a range of professionals who I really respect, but if we came into contact in a professional environment, would I let them know who I am? Recently some staff from my university have followed me on twitter, and I’m pretty sure for people who already know me, I’m pretty identifiable online.

I doubt the NHS has the funds to do a Lisbeth Salander-style online check on me, and airing a few controversial opinions and having a good time is not exactly illegal. I don’t think I break confidentiality in my writing, but am aware that others might see it differently so am mindful of it. Even if my clients aren’t identifiable, it perhaps communicates something about my profession and how we share information if I’m seen to be writing about people I work with. I’m undecided about whether I want to come ‘out’ as a wounded healer and professional with lived experience of mental health problems, and I think it’s something I’ll probably leave to consider later in my career when I’m in a more stable position job-wise.  And if clients found me online? That would be a difficult issue, but I don’t think impossible to manage. I’d like to be an empty vessel to take on their projections and unconscious phantasies, but at the same time, I am a real person and it’d be unrealistic to act as though I have no life beyond the clinic walls. Like Lyssa says, I’d probably be embarrassed, but this is me, and my writing and my past experiences are part of who I am.

Thanks to Lyssa and LandslideGirl for their help! Go check them out, they’re great. I’d welcome any other opinions and views from others who struggle with this personal/professional interface and the dilemmas the internet and disclosure bring up.

Exploring Borderline Personality Disorder in Photography

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Borderline Personality Disorder (BPD) is a controversial diagnosis. While some doubt the validity of the label (see Susanna Kasen’s ‘Girl, Interrupted’), it’s a psychiatric diagnosis that is not well-known by the general public and often viewed negatively by professionals. The condition is often characterised by a pervasive problems in relationships, difficulties regulating mood and an unstable and often fragmented sense of self, which may seriously impact on an individual’s functioning and quality of life. Individuals diagnosed with the condition may engage in a range of impulsive and often dangerous behaviours, such as self-harm, heavy drinking, drug-use and aggressive behaviour towards other that may bring them to the attention of services. They may go to frantic efforts to deal with difficult emotions and feelings of loneliness and abandonment, and this can leave them characterised as manipulative and attention-seeking by professionals and those around them.

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Personally I’m sceptical of the concept of a ‘disordered personality’ as a whole, but this is a cluster of symptoms (although there is a very wide range of different things than can come under the umbrella of BPD) and pattern on relating to the self and others that is often seen in mental health services. Many of these individuals have had difficult, chaotic and often traumatic experiences as they were growing up and throughout their lives, and with this in mind, the way in which they behave can make a lot of sense.

I was drawn to Daniel Regan’s ‘Type B’ Project, which I think may get people to think about the experiences and classification of those who get given the BPD label. In this series of photos Daniel expresses some of the difference characteristics associated with the disorder. Often the behaviour of someone with BPD baffles and frustrates the people around them, and I think these images might offer a different way to think about and understand the person’s perspective. The images seem to bring feelings of aloneness, being overwhelmed and bombarded, disconnected. Emptiness and extremity. Using the same model throughout, I think Daniel captures something of the fluctuating moods and volatile sense of being that might be a part of the life of someone with this disorder.

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See the whole project on Daniel’s website here.