“I feel so ashamed”
Vivienne had just been told by Hannah, the young gynaecologist that she had pelvic inflammatory disease (PID), an inflammatory condition caused by sexually transmitted infections.
“I didn’t know how to respond” Hannah later confessed. “I wanted to tell her that it was nothing to be ashamed about, but that seemed so insensitive, because she she really did feel ashamed. But also I didn’t want to say, “it’s OK to feel ashamed”, because then she might think that I was saying, “yes, you ought to feel ashamed”.”
We had been discussing an essay I had written about how shame presents in clinical encounters.
The bottom line is that shame is never a good thing. Which is not to say that shame never leads to a positive personal transformation, because there are plenty of testimonies to show that it sometimes does, but rather that the negative consequences of self-harm and self-loathing, isolation and the rebound effects – doing more of the things one has been shamed about – considerably outweigh the positives.
Shame often leads to unbearable loneliness so one of the best things we can do for people who are feeling ashamed is simply to stick with them and see them through it.
Brene Brown uses the example of someone who is feeling ashamed sitting at the bottom of a pit to show how we can helpfully respond.
Vivienne is sitting at the bottom of a deep, dark pit.
Hannah is walking past with another doctor. Her colleague peers in.
“Oh dear” her colleagues says, “Sorry to see you there, it looks pretty bad. I hope you can get out soon.”
She walks off.
Hannah looks down.
“Hi, I’m sorry you’re stuck in the pit”
“I’d like to come down and see what it’s like, but it’s too far”
“Is it as cold and dark as it looks down there?”
“It is. It’s really dark. And cold and damp too”
“oh, that sounds awful”
“it’s the cold I hate the most”
“Would you like a blanket?”
“I’ll get one for you”
“Are you on your own? Is there anything else down there?”
“I prefer not to see anyone. Sometimes my sister comes down, but not much. I think it’s too dark and damp for her”
“I’m sorry to hear that, do you get lonely?”
“I do, but I can’t really handle other people, and I don’t think they can really handle me either”
… continues …
When Brown describes empathy she describes someone climbing down into the pit to sit with the person. She proposes that what people need when they are feeling ashamed is empathy, someone willing to let them know that they too also feel ashamed and vulnerable at times. I think that this is too much to ask of young doctors who have probably never experienced anything like what their patients are going through. It’s made even harder by differences in age, class, culture, power and so on.
What I think matters, in these professional interactions, is showing an interest, a gentle curiosity, a sincere desire to know what it’s like to be at the bottom of a deep pit, – that is, what is like to live with a chronic illness, or be faced with an serious or incurable disease, or to feel ashamed. We need to let our patients tell their stories.
Philosopher Havi Carel is very helpful here.
Living with a serious illness herself she reminds us,
- Describing to others what it is like to live with and experience a serious illness can be really difficult (even for a philosopher). Patients might need our help to do this
- Doctors and healthcare professionals are interested in symptoms, but rarely ask patients what it is like to actually live with and experience illness
- Patients’ interpretations are often uninvited, unrecognised or ignored because of lack of time, or a perception that they are unimportant
- Patients are afraid to offer descriptions of their lived experience – what Carel also calls the phenomenology or embodied experience of illness because professionals are in a position of power over patients and only allow patients to tell the medical narratives they want to hear
- I would go further and say that at a policy level there is no accounting for the time and continuity of relationships necessary to have these conversations
In Illness as Narrative, Ann Jurecic explains,
“if one of the consequences of modernity is that we no longer depend on traditional explanations for suffering, loss and morality, and if doctors’ offices and hospitals cannot function as spaces where personal meaning can be developed, then the existential questions about human fragility and significance have to be asked and answered elsewhere” (Jurecic 2012)
Patients may feel very exposed when they tell these stories, especially if they include shame or fear of death, disability or loss of independence. They need to be invited, not forced to share them with us. Doctors may be afraid of inviting patients to tell these stories because we share the same fears ourselves. The lessons of doctors who have been patients is that when we do this both doctors and patients benefit.
As medicine continues its transformation from being curative to supportive because more patients are living longer with more serious conditions it will become increasingly important for us to understand their experiences. The sacking of NHS managers, impossible to achieve savings, and an obsession with regulation and targets is forcing doctors and nurses to spend ever-more time staring at computers and sitting in meetings, leaving little time to listen to patients.
Closer attention to our patients’ narratives can make our work more humane and effective. We must demand more time with our patients and better continuity of care, so that we can do this.
Listening and measuring. Abetternhs blog.
Patient reassured. How to give patients confidence. Abetternhs blog.
Patient voices. Illness and epistemic injustice. Havi Carel
Computer templates in chronic disease management. Swinglhurst 2012