*Please note that this post talks about trauma, including sexual assault, so please take care. It briefly mentions self-harm and suicidal thoughts.*
The link between borderline personality disorder (BPD) and experience of trauma is well-documented. A study from the University of Manchester showed that 'people with BPD are thirteen times more likely to report childhood trauma than people without any mental health problems'. That's not to say every person with BPD has, or identifies with having, a trauma history. It's important to know that a proportion of people with this condition don't identify with having experienced trauma.
Importantly, Dr Filippo Varese from the University of Manchester notes that this study's findings 'underline the importance of trauma-informed care for people accessing mental health services, where prevalence rates of BPD are high.' I couldn't agree more. It goes without saying that the more mental health professionals understand the impact of trauma on emotion regulation, cognitive processes and sense of self, and respond appropriately, the safer individuals with BPD and/or a trauma history will feel.
However, I am also keen to say that it's not just mental health services that need to be trauma informed. In my opinion, physical healthcare practitioners need at least a basic working knowledge of trauma and its potential impacts on both the mind and the body (as connected as they are!). I don't mean doctors and nurses only, but the full range of medical and healthcare professionals: paramedics, pharmacists, podiatrists, dental professionals, osteopaths, radiographers, physiotherapists and dieticians, to name just a few!
An encounter with a healthcare professional, regardless of whether the patient is there for something psychological, physical (or a mixture of the two) is often deeply personal. After all, health professionals are privy to knowledge that people in their patients' personal and social lives might not be. Psychotherapists, pharmacists, nurses, surgeons and osteopaths may know things about our bodies, minds and lives that people outside of that clinical room might never know. Maybe such information is just not relevant enough to bring out of the clinic room, or maybe we don't want others to know or find it too difficult to say.
There is a certain physical intimacy to healthcare. A professional may look at—or into!—parts of our bodies that perhaps few (or no) others have ever been privy too. Not only might they look, but also listen to, feel, prod, open, slice, cut or inject. A patient might feel many things in such a physically close encounter, but I imagine uncomfortable, anxious, embarrassed or threatened are natural responses. Of course, supported, comforted, healed and reassured are generally at least part of the aim too!
I think healthcare encounters like having an eye-test, physio for a sore back, a dentist check-up or getting an X-Ray, can elicit feelings of vulnerability, powerlessness, exposure and, in some cases, shame. Maybe this is partly because, on some level, healthcare can be a reminder of the imperfections and fallibilities of our bodies and minds.
Sometimes I think the fear of the social implications of an illness is more painful than the illness itself. As medical historians and sociologists have noted, since the dawn of time illnesses of one kind or another have been associated with stigma. As Erving Goffman describes is, stigma is term that refers to the 'situation of the individual who is disqualified from full social acceptance'. To be stigmatised is to experience, on some level, a rejection. The stigmatisation of illnesses is culturally and temporally contingent (it depends on where a person is in time and place). Notable examples of illnesses that have been, or still are, particularly stigmatised include include HIV, sexually transmitted infections, cancer, illnesses that affect reproduction or excretion, and, of course, mental illnesses. Unfortunately, some illnesses have been-- or still are-- incorrectly associated with being dirty, immoral, lazy or even less lovable: If I have HIV, will I still be attractive to my partner? Does my diabetes mean I am a bad person? If my employer knows I have bipolar, will I lose my job?
For people with BPD and/or a trauma history though, feelings of vulnerability, exposure and powerlessness may feel especially strong and overwhelming. People who struggle with emotion regulation or are prone to dissociate under stress or experience flashbacks may find a clinical encounter completely overwhelming. It is normal to feel frightened in the face of such powerful feelings if we have not developed the skills to soothe intense emotions or manage difficult thoughts.
As researchers have noted, sometimes medical encounters and procedures can remind people of past abuse or make a person feel as though the abuse is happening again or being reenacted. It can be terrifying and re-traumatising. It can provoke dissociation, flashbacks, crying, suicidal thoughts or urges to self-harm and more. An example I read about recently is maternity care, which can trigger frightening memories for some people who have experienced sexual abuse and/or trauma. The My Body Back Maternity Clinic is the first maternity clinic in the world specialising in post- and antenatal care for people who have been sexually assaulted.
I think that one of the reasons why medical encounters can be particularly difficult for people with BPD and/or a trauma history is the emotion of shame. As a number of studies describe, both shame and guilt the 'so-called self-conscious emotions, are of central clinical relevance to BPD' (Gratz et al, 2010,). A 2009 study found that participants with BPD had both 'higher levels of shame in response to the negative evaluation' and levels that took longer to dissipate than participants without BPD (Göttlich et al, 2009).
Let's dig a bit deeper. Put simply, shame is an emotion that can arise in interpersonal contexts when a person feels or is told, either directly or indirectly, that something about them is wrong, bad or unworthy. Shame is associated with a negative evaluation of the self (feeling bad about who you are) and it is often accompanied by an urge to hide the aspect that feels bad or wrong. Sadly, illness tends to be (either implicitly or explicitly) associated with being flawed, dirty, bad: 'there is something wrong with your ________.' People live in their bodies; their sense of self is tangled up in their physicality. Illness can feel very, very personal. It therefore makes sense that some people feel great shame during medical encounters.
Clinic rooms can therefore feel like confessional spaces for some people. Sometimes the clinician skilfully tends to the patient's shame, so that this 'uncovering' is liberating. Other times, the clinician fuels the shame and the patient leaves feeling isolated and unworthy of care. The difference is in the compassion and empathy shown by the clinician. As Brene Brown attests: shame cannot survive with empathy. I think Brown is more or less correct, although dissolving shame may require a large dose of empathy over a length of time.
Shame is a self-conscious emotion associated with the thought that everyone is staring or feeling of being naked and exposed. I can't think of a situation more likely to create self-consciousness than a medical examination or a procedure.. We might need to remove layers of clothing, put parts of ourselves beneath a bright, white light or stand inside machines designed for revealing the layers usually hidden by flesh, skin or bone. Sometimes little clippings are stolen from us and sent away to strangers in faraway labs.
The interior design of healthcare settings also tend to accentuate self-consciousness; mirrors, reflective metal or glass surfaces, strong lighting, alongside instruments for looking, inspecting, opening, measuring or recording. I find that waiting rooms too evoke not only trepidation, but the sense of trying not to look. People in waiting rooms usually want to respect each other's privacy; eyes look down instead of wandering. I can't help but notice that looking down can be a sign of shame, as well as of deference or propriety.
The type of parenting known as 'shame-based parenting' is become more talked about it. Shame-based parenting overly-associates a child's behaviours with 'goodness' and 'badness' and deploys shame as a deterrent against so-called 'mistakes': 'naughty boy', 'bad girl', 'you should be ashamed of yourself'. For obvious reasons, shame-based parenting tends to creates a painful beliefs about the self (and others).
I think healthcare (like social care and education) can be shame-based too. The topic of body-shaming in healthcare is being written on and discussed in quite a lot of depth right now. I am just beginning to discover a body of literature on judgmental language in healthcare. In 'Humanising Birth: Does the Language we Use Matter?', N. Mobbs, C. Williams and A. Weeks write that it is the 'duty of caregivers to use language that will help empower all women'. 'Language signals the nature of the relationship between woman and caregiver, and can deny or respect a woman’s autonomy.' The authors of this paper describe that words like 'failure to progress', 'failed induction' and 'poor maternal effort' unfairly judge and blame a person giving birth. I also encountered an NHS document about language and diabetes urging clinicians to 'be aware of the impact [our] words may have on their diabetes care'. It explores the semantics of compliance, being told off, cheating, control and goodness/badness. The document begins 'with great power....'.
Undoubtedly, the power that clinicians wield will heal or hurt, depending on how it is used. In how much depth do all clinicians assess the ongoing impact of their language on their patients?
In 'The Value and Benefit of Narrative Medicine for Psychiatric Practice', Child and Adolescent Psychiatrist Sabina Dosani explains the merits of paying close attention to the turns of phrase, metaphors and stories that patients use to express parts of themselves and their lives. She explains the fruitfulness of applying 'close reading skills from literary studies' in her work. Dr Dosani explains that paying attention to story and showing sensitivity towards language enables her to connect with, and better understand, the families and children with whom she works. I think that if the full spectrum of healthcare professionals—from surgeons to midwives, opticians, osteopaths, dentists and so on— paid attention to their use of language, as well the words their patients are using, then the foundations of empathy would be laid. With the foundations of empathy laid, shame is less likely to set in.
I have been carrying shame from a medical encounter that happened long, long ago. I can't give any more details than that because it makes me feel out of control. If that clinician had listened to my words and responded with thoughtful language, would I have felt so much shame? I think my shame would never have bedded down into my body as it did.
However, there is more to this than words. I was young. I spoke little because of my fear. I didn't have the words to express the intensity of my shame, and even if I had, I would never have felt safe enough to do so. I was there: pinned down with my shame, terror and disgust. I wanted to vomit over myself, just so I could externalise and visualise my own disgust. I was so ashamed of my shame that my tongue double knotted itself.
Would I have felt this way if this healthcare professional had been aware of the physicality of this encounter; the proximity of their large body to my small one, the weight of their certificates against my childhood, the smells, sounds, sights, the presence of other people close. If the clinician had paused to think about how this was making me feel, then maybe they would have have seen my vulnerability. Maybe they would have felt compelled to respond to it.
Many years have passed since this moment, but I never forget how exploited, degraded and ashamed I felt. How that medical encounter invaded my mind and my senses is still locked into my body's memory: the tenses muscles, racing heart, sweaty palms, the forced images that repeat over me when I least want see them.
I think many people will attest that traumatic memories often bury into place beyond words: images in the mind's eye or sensations deep in the body.
Lots of people avoid the appointments or medical tests that elicit uncomfortable feelings and I completely understand that. After all, shame is an emotion that makes us want to hide. The fear of being revealed as bad, wrong or immoral can sometimes feel too much to bear when life feels difficult enough already.
I have always been a person who finds avoiding my fears more uncomfortable than facing them. This means that no matter how terrified I am of re-experiencing shame, I always show up to appointments. That's just me, I don't know why.
I am lucky to have had some healing experiences in the last few years. These empathetic encounters have given me the chance to feel my shame more as an observer, rather than feeling fully-deserving of it. I am hopeful that health professionals are becoming increasingly aware of their words, their patients' words, as well as body language, architecture, interiors, music, colour, smell and so on. I am hopeful that themes like shame, power and vulnerability are becoming more and more talked about by clinicians. Clinics like Bright and White Dental Spa in London, Tia Clinic in New York and EKH Children’s Hospital in Bangkok are going to lengths to make a warm, soothing atmosphere for patients.
I am optimistic that clinicians are open to thinking about how they can make their clinics and practices less threatening and more comfortable for people with BPD and/or trauma histories. If there are any clinicians reading this, then I think listening to, and consulting with, people with lived experience could be a helpful starting point. Of course, nobody will be able to get it right for everyone, but I think flexibility is key. Offering options and control to the patient is usually helpful too. Transparency and honesty is always essential.
I know that some clinicians want to take it one step further too, and provide opportunities within their practices for trauma healing too. After all, the vast majority of caring professionals came into the profession to...well, care.
Can you relate to my emotions in this post in any way? I would love to know your thoughts on what I've written, whether you are a clinician or a patient who has experienced shame and/or with BPD and/or a trauma history.
I would like to thank my friend Dr Sabina Dosani for setting the wheels of this post in motion through chatting!
Erving Goffman, Stigma: Notes on the Management of Spoiled Identity (London,1963).
Farnam Street, Brene Brown: The Difference Between Guilt and Shame' (undated).
Sabina Dosani, 'The Value and Benefit of Narrative Medicine for Psychiatric Practice' (BJ Psych Bulletin, 2020)
Natalie Mobbs, Catherine Williams and Andrew D Weeks. 'Humanising birth: Does the language we use matter?' (The BMJ Opinion, 2018).
NHS England, 'Language Matters: Language and Diabetes', 2018.
University of Manchester 'Borderline Personality Disorder has strongest link to childhood trauma' (https://www.manchester.ac.uk/discover/news/borderline-personality-disorder-has-strongest-link-to-childhood-trauma/)
Martin Göttlich, Anna Lisa Westermair, Frederike Beyer et al 'Neural Basis of Shame and Guilt Experience in Women with Borderline Personality Disorder
(European Archives of Psychiatry and Clinical Neuroscience, 2020)
Kim L Gratz, M Zachary Rosenthal, Matthew T Tull et al, 'An experimental investigation of emotional reactivity and delayed emotional recovery in borderline personality disorder: the role of shame' (Comprehensive Psychiatry, 2010).