Pain, described by Maggie O’Farrell

His head is filled with pain, like a bowl brimful of scalding water. It is a strange, confusing kind of pain – it drives out all thought, all sense of action. It saturates his head, spreading itself to the muscles and focus of his eyes; it tinkers with the roots of his teeth, with the byways of his ears, the paths of his nose, the very shafts of his hair. It feels enormous, significant, bigger than him.

from Hamnet by Maggie O’Farrell

The nurse stands in their place – Doireann Ní Ghríofa

I watch a screen assembled around their baby, a boundary intended to generate an illusion of privacy. The screen cannot mute the infant’s screams, however, nor can it block the song of the nurses who stroke its brow, who coo as they hold it still for whatever agonies of syringe or cold scalpel that follow. This tiny howl is a sound I will never excise from my memory. I weep as I listen – I weep in helplessness, yes, but I also weep in gratitude for those nurses’ certainty that parents must spare themselves from witnessing a child’s agonies. The nurse insists. The nurse stands in their place.

from Doireann Ní Ghríofa’s A Ghost in the Throat

Medical gaslighting: The women not listened to or viewed as overdramatising or catastrophising

Dr Marie Theresa Ferretti, neuroscientist, co-founder and CSO of the Women’s Brain Project, says the same symptoms that tend to be attributed to organic disease in men, are much more likely to be diagnosed as anxiety or panic attacks in women. Women with acute pain are less likely to get opioid drugs and more likely to receive sedatives. Dr Ferretti views the recognition of mental health issues in women as a positive, but she argues that it becomes problematic if doctors dismiss the original symptoms because the women may end up with an incorrect diagnosis or ongoing pain.

See here for full Irish Times article >>>

Marian Keyes on her alcoholism

From How To Fail With Elizabeth Day podcast > https://podcasts.apple.com/ie/podcast/s7-ep6-how-to-fail-marian-keyes/id1407451189?i=1000464666298

Alcohol had been a great friend to me from early teens, and it just became a better and a better friend… Everything was getting worse… My drinking moved from a worry to obviously alcoholic. I felt very depressed and I felt very hopeless, and I was so grateful to alcohol, because I thought, my god, this is helping me, because I was so unhappy, and how would I manage if this was taken from me?

I woke up one Monday morning and I was due to go to work. The depression that goes with heavy drinking is hardly a surprise considering that alcohol is a powerful depressant. I woke up and I thought I cannot go on like this…

Alcoholics are addicts who decide to get help. They often talk about a kind of jumping off point, where you realise you CANNOT CARRY ON as you ARE. But the idea of living without the … alcohol … Well I was in this paralysed, powerless, terrified state; I was on anti-depressants and I was on sleeping tablets; and I had took them all. And I don’t think I wanted to die, I wanted help. I wanted somebody to come along and helicopter me out of it… But by trying to kill myself, no matter how half-hearted it was, it kind of forced me into a point where I could no longer pretend that I was okay. And that got me into a rehab place. But even when I was going in there, I thought I was really DEPRESSED… I thought whatever was wrong with me … I needed to have therapy and some sort of trauma would be identified and then it could be sort of plucked out of me, and then I’d be fine and then I could go back and I’d be a normal person who could manage life and I could drink normally. Jesus, I was delusional, but that is part of the whole illness.

I was just very lucky that I went there and very quickly it dawned on me:

The only thing that’s wrong with me is that I’m an alcoholic.

And the only way I’ll ever be okay is if I stop.

And it was a clear revelation. But also I was heartbroken because this had been my best friend, it was the LOVE OF MY LIFE, it took away my pain, it took away my fear, it took away my sorrow and my heartbreak at my empty life and at my loneliness. The thought of being without it … I grieved it, like the way you would grieve a lover or a person who died. It’s a very powerful relationship, addiction, it’s incredibly enmeshed… and passionate… It’s like having a dysfunctional relationship with an abusive person. I knew what I had to do. And very quickly I became hopeful. My feelings changed really quickly. I was lucky, I think a lot of people who don’t get that immediate lift might relapse. But just because I wasn’t pouring this powerful chemical into my any longer, my mood changed. I could see the wonder of the world, which had seemed like it was misty and ashy and shrouded in grey for so long. And I had hope that I could have a life which was more like the lives other normal people had.

It’s such a hopeless condition, addiction – that feeling that every door is locked, that you’re trapped in this underground room. It is POSSIBLE to recover. It is POSSIBLE. And really and truly for me it was my waking thought, it was all about how I could drink, where I would get it, how I got the money for it, it was everything to me. I can be out now, I can go to parties, I can be at dinner with people, people can drink. I am almost literally blind to alcohol. The freedom I’ve been given, when I was such a prisoner. And now I don’t care if I accidentally smell someone else’s wine – I feel, oh my god! no get it away from me! It’s like horrible stuff.

All it made me feel was miserable for years and years.

Flying in the face of the facts of your life

From Nuala O’Faolain’s ‘Are You Somebody?’

“When I was in my early thirties, and entering a bad period of my life, … I asked the doctor to send me to a psychiatrist.

The psychiatrist was in an office in a hospital. ‘Well, now, let’s get your name right to begin with,’ he said cheerfully. ‘What is your name?’

‘My name is … my name is …’ I could not say my name. I cried, as from an ocean of tears, for the rest of the hour. My self was too sorrowful to speak. And I was in the wrong place, in England. My name was a burden to me.

Not that the psychiatrist saw it like that. I only went to him once more, but I did manage to get out a bit about my background and about the way I was living.

Eventually he said something that lifted a corner of the fog of unconsciousness. ‘You are going to great trouble,’ he said, ‘and flying in the face of the facts of your life, to recreate your mother’s life.’ Once he said this, I could see it was true.”

Eight days on a trolley in an Irish hospital – a diary, by John Keogh

From The Irish Times, 09/07/2019

The quiet reception was deceiving. Down here it’s bedlam. Trolleys line both sides of every corridor, ill and distressed patients packed in head to foot. It’s a tight squeeze to get a trolley down the middle, and more than once the corner of my trolley clatters off another. It’s a sound I will become familiar with. That and the alarms. And the shouting. In A&E, there is always shouting.

Read the full article here >>>

Session #5: Looking Back (at institutions that failed us)

These notes on the fifth session are written by one of the participants, summarising our discussions of Celia de Fréine’s Blood Debts & Hanna Greally’s Birds’ Nest Soup.

I was … very affected by the texts we looked at this week: the narrative accounts from a patient’s point-of-view really spurred my inner empathist, and, by the end of ‘Blood Debts’, I personally viewed the doctors and medical professionals as incompetent or even villainous. I believe strongly that this is what Medical Humanities really brings to our medical education. TV shows often paint this idea of doctors who, despite their smarm and snark, only need critical thought, smarts and perhaps a tiny little bit of luck to end up as the celebrated hero (or anti-hero) of their respective narratives (think House M.D.,Grey’s Anatomy, or The Good Doctor). Outside of perfectly wrapped 45-minute storylines, however, other narratives exist: those of the long-suffering, patient patients, mistreated by medical professionals, ever-wary, ever doubtful. How can we be alienating the very people we have sworn to help? It certainly becomes impossible to ignore this incongruity when stories and poems force us to consider their perspective.

Blood Debts by Celia de Fréine

> This week we looked at Blood Debts by Celia de Fréine, a translation of Fiacha Fola, a sequence of [Irish language] poems by de Fréine describing her experience of being one of 1600 Irish citizen infected with contaminated blood products in the 1970s.

> We began, however, without any knowledge of the context as we went into the first poem: ‘chalice of my blood’. This was a reflective poem acknowledging there seemed to something congenitally wrong with the poet (suggested to literally be her blood), and lamenting on what what she she could have done differently should she had known. She concludes that she would have not done anything differently. She invokes religious (Greek/Roman) imagery that elevates the concept of marriage to mythic proportions and seems to celebrate her right to have the partner and children that she wants.

> In the second poem, ‘miracle play’, heavy dream-like imagery is used, with references to religion and that of plague as she watches a biblical play. There is imagery suggesting the concept of something sinister hiding within something pure, and the concept of dramatic irony as a literary technique—originally used in Greek tragedy, by which the significance of a character’s actions is clear to the audience although unknown to the character—is introduced in her understanding of the spread of disease, unbeknownst to the biblical characters, and harks back to the preceding poem to the concept of the poet’s present self looking at her past choices in retrospect.

> The next poem, ‘september – month of birthdays’ recounts the birth of her second child and the administration of Anti-D (Rho(D) immunoglobulin (RhIG)). There is references to complications in her child’s birth, with his birth being breech instead of head, and references to her child not crying. There is also a sense of misplaced trust in the hospital/medical practitioners, with some subtle doubt being suggested as to whether they are acting in her best interests. Particular emphasis is put on her injection of Anti-D.

> The next few poems describe how she believes she is getting sick and jaundiced. She is placed in a situation where her doctor does not believe her symptoms and self-diagnosis and is dismissed by the doctor as ‘run-down’. This continues on with various accounts of the paternalistic attitude of doctors, from obstetricians to specialists who seem indifferent to her worsening illness. Eventually she is informed of the Anti-D scandal on the media, but despite her efforts to find out more, her concerns are continually sidestepped by upper management. Her initial doubt surrounding healthcare professionals evolves very much into anger and blame and they are painted as clear antagonists in her narrative.

> What Blood Debts does excellently is highlight the communication breakdown between medical practitioners and patients, especially when there is a mistake make by the practitioners. From the dismissiveness of first-line primary healthcare practitioners to the evasiveness of upper management, the medical field is depicted as having a toxic attitude of evasion and paternalism that [reflects] a lack of respect and dignity for its patients. Although occurring in 1977, the Anti-D scandal only became public in 1994—almost 20 years after it occurred, and de Fréine’s account is one of 1600 Irish citizens who were affected.
>

Hanna Greally’s Birds’ Nest Soup

> We ended by taking a look at an introductory excerpt from Bird’s Nest Soup by Hanna Greally, explained subsequently by a podcast we listened to as an autobiographical account of her institutionalisation in a mental hospital against her will, without the legal capacity to have herself discharged. To bring together all the sources we looked at in the tutorial, we considered the concept of institutionalisation: not only as a synonym for ‘incarceration’, but in its sociological meaning—the process of establishing something as a norm in an organisation or culture. We considered the idea of the institutionalisation of medicine and the possible implications that that has on the our future role as doctors-to-be; how the hallmarks of institutions—such as hierarchal systems of bureaucratic management, strict systems of conduct, and depersonalisation—can have a detrimental impact on the doctor-patient relationship.

> I have included some articles for anyone who is interested in further reading around the texts. The first explains the details of the 2018 CervicalCheck scandal, which we noted bares shocking similarity to the Anti-D scandal, the second is a blog post by a recently qualified doctor from the US about the concept of institutionalisation and the reality of real world practice in corporate medicine, and the final article is on paternalism and the doctor-patient relationship.

> CervicalCheck scandal: What is it all about? (The Irish Times, 2018)
https://www.irishtimes.com/news/health/cervicalcheck-scandal-what-is-it-all-about-1.3480699

> How the Institutionalization of Medicine Has Destroyed the Doctor-Patient Relationship (Shlifer, 2016)
http://in-training.org/institutionalization-medicine-destroyed-doctor-patient-relationship-11491

> From Paternalism to Partnership (The Irish Times, 2001)
https://www.irishtimes.com/news/health/from-paternalism-to-partnership-1.316916