*Please note that this post references trauma, including a brief mention of sexual assault, so please take care.*
Lately, I've been seeing a lot online about the need for trauma informed mental health services, but it's not just mental health care that should be trauma informed— I believe physical health care should be too. Now before I get into the nitty gritty of this post, I will say that this post is not to debate what 'trauma informed' means and whether it's being properly used by organisations in a meaningful way or not. Rather— for the purposes of this post— what I mean by trauma informed is having an understanding of what trauma is, how it affects individuals and what can be done to reduce suffering and avoid re-traumatisation.
As you may well know, 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 though. It's important to know that a proportion of people with this condition don't identify with having experienced trauma.
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 better mental health professionals understand the impact of trauma on emotion regulation, cognition and sense of self— and who then respond appropriately— the safer individuals with BPD and/or a trauma history will be during clinical encounters.
I think I speak for lots of people with BPD and not just myself when I say that physical, as well as mental, health services, need to be trauma informed. I believe that physical healthcare practitioners need at least a minimal working knowledge of trauma and its potential impacts on both the mind and the body (as connected as they are). And I don't mean doctors and nurses only, but the full range of medical and healthcare professionals— from paramedics to pharmacists, midwives, podiatrists, dentists, physiotherapists and dieticians, to name just a few of the many physical health clinicians.
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 even people in their patients' personal lives might not be. Pharmacists, psychotherapists, midwives, GPs, physiotherapists and dentists may see and know things about our bodies and minds that people outside of that clinical room might never know. Maybe it's that such information is just not relevant to share with people we know interpersonally, or maybe we just don't want others to know or find it too difficult (or embarrassing?) to share.
There is a certain physical intimacy to healthcare and I hope professionals never, ever forget the intense anxiety this can provoke. A professional may look at, even into, parts of our bodies that few (or no) others have ever been privy too. Not only might they look, but they might also listen, feel, prod, open, slice, cut or inject. We can experience feelings of vulnerability, exposure, loss of control and— depending on whether we have had, or continue to have, negative messages about our bodies and self— embarrassed, humiliated or threatened. Of course, given the right clinician and environment, the hope is we can feel a whole spectrum of more positive feelings too such as supported, comforted, reassured and even restored.
There are all sorts of complex reasons why accessing healthcare can be anxiety provoking, from fears of exposure, invasion of personal space and a reminder that the body and the mind are imperfect and subject to change. Whilst our bodies and minds have incredible capacities to heal and modern medicine has technologies akin to magic, going to an appointment can be a reminder that the human body has it's limits and frailties. And acknowledging that whilst most problems have solutions, some may only be partial and, more rarely, some may have none at all.
Sometimes the social implications of a health problem can be more painful than the physical issue itself. As medical historians have noted, since the dawn of time ill health has been associated with stigma. As the sociologist Erving Goffman described it, stigma 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 illness 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. Some examples include 'if I have HIV, will I still be attractive to my partner?', 'Does my diabetes mean I did something bad?', 'If my employer knows I have bipolar, will I lose my job?', ''Is it embarrassing that I had a knee replacement?'. It is notable that one of the most common fears is fear of the dentist and for many people this is linked to fear of being seen in a negative manner (or even scolded) by the dentist.
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 who dissociate or experience flashbacks may find a clinical encounter completely overwhelming. It might look like 'zoning out' during a physical examination with the physio, crying whilst having a check up at the dentist, breathing very fast and feeling panicky when getting your eyes tested or struggling to find the words to speak to a GP. If a person is not able to soothe intense emotions or manage difficult thoughts and the clinician is not aware of able to support, then an appointment may become really difficult.
In some instances, medical examinations or procedures might remind people on some level of past traumatic experiences. That 'small thing' that frightened the young child that seemed like 'normal' at the time, but became a terrifying memory; and now the adult 'becomes' that frightened child every time they are back in similar situations. Maternity care is a key area that requires trauma informed thinking, especially for those who have experienced sexual abuse and/or assualt. 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 and I hope more clinics do work of this type in the future.
Shame is all too often the elephant in the clinic room and I think especially so for people with BPD and/or a history of trauma. As several 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).
Put simply, shame is an emotion that can arise in interpersonal encounters. It can be felt when a person feels or is told, either directly or indirectly, that something about them is wrong, bad or unworthy. It's 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. How many people go to a doctor / physio /dentist / other professional and reveal things they were too scared to share with anyone else? Sadly, illness tends to be (either implicitly or explicitly) associated with being flawed, dirty, weak or bad: 'there is something wrong with your eye / heart / leg / uterus / teeth.' People live in their bodies; their sense of self is tangled up with their physical being. Illness is by it's very nature deeply personal. It therefore makes sense that some people feel great shame during medical encounters. I wish this weren't the case.
For better or for worse, clinic rooms can feel like confessional spaces for some people. 'I'm worried about ____ and I haven't told anyone' or 'I've been in pain for years with ____, but I was too scared to do anything about'. When a clinician skilfully tends to the patient's experience of shame, then their 'uncovering' is liberating. (The etymology of the word 'shame' is said to mean 'uncovering' which seems very apt for medicine.) In other instances, the clinician fans the flames of a patients' shame and they leave feeling more isolated and more unworthy than ever. A classic example would be someone who went to the dentist after avoiding appointments due to anxiety, felt humiliated and then felt too upset to go back. Luckily this becoming more rare as more professionals are understanding their responsibility to be empathetic and compassionate. I think Brene Brown is more or less spot on when she says 'shame cannot survive with empathy'. Although dissolving deeply rooted shame may require repeated doses of instances of empathy over time. I guess that's how trust is built too.
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. An NHS document about language and diabetes urges clinicians to 'be aware of the impact [our] words may have on their diabetes care'. It explores 'compliance', 'being told off', and the semantics of cheating and goodness/badness. The document begins 'with great power....'. With that 'great power' should come that 'great responsibility' of considering how language can either hurt or heal.
Dr Sabina Dosani, Child and Adolescent Psychiatrist, explains the merits of paying close attention to the metaphors and stories that patients use to express their inner 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.
Given that shame is a social emotion, interpersonal communication is nearly everything when it comes to breaking it down, but environment can play a part too. Shame is a self-conscious emotion often associated with feeling stared at or exposed and clinic rooms are usually full of bright lights, mirrors and requests to remove clothes, lie underneath surgical lights and encounters with equipment that literally looks— or even goes—into our bodies. What can be done with a simple knock on the door, adjustment of the light, curtain or the words 'are you ready?' to help a patient feel less invaded, watched or to give a little more privacy?
I have been carrying shame from a medical encounter many years ago. If this professional had thought about how judgmental they were coming across, how helpless they made a child feel and the impact of such negative language on a young mind, then how much suffering would have been avoided? If the clinician had paused to reflect on how their big heavy body compared to my small powerless one, how their certificates on the wall felt in the context of my vulnerability, then maybe they would have thought twice about their responsibility. Whilst time has passed and I tell myself I never deserved that, my body reacts by tensing muscles, racing heart, sweating and vivid images in my mind's eye.
Luckily, I find avoiding my fears more uncomfortable than facing them and no matter how terrified I am of re-experiencing shame, I always show up to appointments. I'm grateful to have had some healing experiences in adulthood. These empathetic encounters have given me the chance to realise I didn't deserve that humiliation. I'm hopeful that health professionals are becoming increasingly reflective about how vulnerable a patient may feel and thinking about communication and environment. I would never expect 'perfection' (whatever that is!), I only ask that a professional is thoughtful about how they communicate and what they do.
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 chatting with me about these issues and giving me some of the ideas in this post.
References:
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).