Mysterious Pain

‘Just try – in a real case – to doubt someone else’s fear or pain!’
(303. Ludwig Wittgenstein, Philosophical Investigations)

Recently I’ve been bothered by a few mysterious and troublesome physical health problems, which has meant lots of doctor’s calls and appointments, but with little clarification. Luckily, my problem is minor, and its main annoyance is the fact that I don’t know what it is. But it did have one big benefit, which was that it sparked an interest in (actual) chronic pain conditions or Medically Unexplained Symptoms (MUS), and what psychological support is offered in those cases.

During one doctor’s appointment, after he did lots of tests and all of them came back normal, I gave a breathless spiel documenting every possible symptom that’s occurred recently hoping that one of them might be some kind of a magic clue. The doctor let me finish, then very gently asked if I might be an anxious person. This threw me a little, because I don’t think I am anxious normally, but of course I probably did sound a little anxious to him and have been more so recently with all these unknowns around my body. I said no and he seemed to believe me.

Leaving that appointment, with not much more information or help than when I went in, I noticed that I did nevertheless feel slightly better, or at least calmer. He was a caring doctor with a nice, patient manner, and it felt comforting to have someone thinking with me about what might be the issue. It felt less lonely. It also felt good to be proactive about the situation – the previous month I had been monitoring symptoms and hoping they’d go away soon, which only increased my anxiety when they didn’t appear to do so. This reminded me of research finding that people’s mental distress sometimes decreases once they know they are about to begin therapy or treatment, even if they haven’t started yet. Simply anticipating support often gives us a little boost of optimism. (I can no longer find where I read this finding but if anyone else remembers it please share!) I also realised that someone merely validating your discomfort often makes it a little more bearable. ‘A problem shared is a problem halved,’ as the saying goes. But most of all, I was grateful for the fact that the doctor seemed to believe me and my description of my symptoms, as I know that this is not always the case, and especially not so for ethnic minorities and/or women.

Last week at work, I triaged a Somalian lady, who told me about the traumatic experiences she had during the pregnancy of her third child. Six months into her pregnancy, she felt severe pains in her womb, but all the medical professionals she told dismissed it and told her not to worry. Eventually she persuaded her husband to take her to a different hospital, and luckily there someone listened to her and the necessary procedures and adjustments were made, but her son did have some complications because of the time initially wasted. I don’t want to make any assumptions as to why this particular lady wasn’t believed in this case, as I have no information about anyone involved, but at the same time, I am all too aware that the fact that I am middle-class, white, and speak with an accent that marks me as ‘educated’, gives me huge advantages whenever I speak to all kinds of professionals. My concerns are often believed and taken seriously, while others who perhaps fit less smoothly into the conservative British system will no doubt have a far more difficult time navigating it, and sometimes with disastrous consequences.

Research has investigated these disparities. A study in the US found that differential treatment of pain for Black vs. White Americans (with Black Americans being systematically undertreated for pain) was related to racial biases about biological understandings of pain experiences in medical professionals and lay people. Horrifyingly, ‘half of white medical trainees believe such myths as black people have thicker skin or less sensitive nerve endings than white people’ (reference). It’s likely that a similar situation exists in the UK as well.

These biases also exist when it comes to gender, with women’s pain often being treated less seriously than men’s. A study found that women presenting at A&E with acute abdominal pain were less likely to be given opioid pain killers than men presenting with the same issue. A review of the evidence around pain treatment and gender biases identified many studies revealing that woman with chronic pain are assigned psychological rather than somatic causes for their symptoms, and often given anti-anxiety medication instead of painkillers.

The fact that it’s treated less seriously might also have to do with the huge gender disparities in reporting pain, with women far more likely to report pain than men, augmenting (or a result of?) the traditional conception of men as ‘stoic’ and women as ‘hysterical’. Women are also far more likely to experience chronic pain conditions such as fibromyalgia, IBS, interstitial cystitis, and temporomandibular disorders (reference). Since Christianity at least, women have had a complicated relationship with pain (Genesis 3:16 ‘To the woman, God said: “I will greatly multiply your pain in child bearing; in pain you shall bring forth children…”.’).

‘Art Must Be Beautiful’ (1975) Marina Abramović

Biological explanations have been offered for why women seem to experience more pain than men, but there is increasing attention on the psychosocial explanations that might be contributing towards these gender differences. This is important to acknowledge and research further, but it might also be a double-edged sword. What may happen is that when patients come to the doctors with ‘unexplainable’ symptoms (which do not respond to treatment and there appears to be no identifiable cause), doctors start looking towards psychological/social factors. They find that people with conditions such as Interstitial Cystitis (IC), for example, are far more likely to also suffer from mood disorders than healthy controls. One such study concluded that: ‘IC/BPS patients frequently exhibit several mental health disorders and negative personality traits [like hypochondriasis]. Therefore, in addition to targeting the bladder pathological condition, psychological intervention focusing on personality traits and anxiety mood status should be provided to improve quality of life of IC/BPS patients.’. The same study also found that ‘the duration of the symptoms is longer in depressive IC/BPS patients,’ so they seem to be implicitly suggesting that perhaps the depressive symptoms are somehow prolonging the physical pain symptoms, which is why they are recommending treating the depressive symptoms at the same time – in order to ‘attack’ the problem from another angle.

It obviously makes more sense, however, to understand this correlation as resulting from the fact that you’re more likely to feel depressed or anxious if you’ve been suffering from medically unexplained painful symptoms for a prolonged period of time.

Having said that, it may not always be so simple. Research is finding evidence of Adverse Childhood Experiences (ACEs) as potentially playing an active role in contributing towards chronic pain conditions: ‘specific ACEs (e.g., verbal and sexual abuse, parental psychopathology, and early parental loss) were associated with the painful medical conditions’. And when people are researching ACEs they are particularly thinking of the ‘psychological’ damage that results, rather than looking into long-term physical consequences. But it looks like the distinction between the psychological and the physical is (rightfully) becoming ever-more blurred. The title of the just-quoted paper is: ‘When Emotional Pain Becomes Physical’, and I hope that a lot more research goes into this murky area of the overlap between the psychological and the physical – as many are starting to agree, it’s time we moved past Descartes.

Another shocking finding that I came across was that among women who had been through severe or chronic abuse, there was a 79% increased risk of being diagnosed with endometriosis, compared to women who hadn’t been abused. This is necessary research into a hugely debilitating condition that affects around 10% of women of reproductive age world-wide.

At the same time, we must also remain cautious that we do not too easily equate chronic pain conditions with past histories of trauma or psychological ‘disorders’. Even if it is acknowledged to be somehow a consequence of trauma, that sometimes puts too much ‘responsibility’ or ‘blame’ onto the patient experiencing the symptoms, and away from the medical community. Medicine was a discipline created by men, so naturally the conditions that affect primarily women are often the ones still under-researched and poorly understood. And then it’s too easy for doctors to assume that, if medicine hasn’t explained it yet, it must be beyond their remit and in the domain of ‘the mind’ instead. (Funny also that these doctors who start leaning on psychological explanations for what they cannot biologically understand are also the ones that may also subscribe to a reductionist physicalist explanation for other mental health conditions!).

We have no idea what direction things happen in – whether it’s a biological problem that causes comorbid mental health problems, or MH problems which drive mysterious physical symptoms, or even emotional abuse that leads to depression which then manifests in physical symptoms. More likely, it makes no sense to think even of causal directions or separate domains influencing each other in turn. We are bodies with minds embedded in worlds so all those strands will be inextricably related and influencing each other all at once, in a non-linear and mutually reinforcing way.

I haven’t reached any neat conclusion in this post, but just wanted to share some interesting findings that I’ve come across. All I can say is that I hope research continues to examine the links and threads that are found in complicated conditions like those still misunderstood or chronic conditions. I also want to start thinking about what psychological support can be offered to people who suffer from these conditions which explicitly doesn’t imply that their suffering is in any simple sense ‘psychologically’ caused. How can we make people feel better when their own body becomes a mystery both to them, and the medical community? At the moment, it appears that the most beneficial support for people with chronic conditions comes from support groups with other sufferers, suggesting that so far, the most helpful psychological support is simply knowing that others are going through something similar. So, validation offers some, though perhaps minimal, respite. CBT also seems to help, but presumably mainly when it doesn’t imply that it’s your ‘negative beliefs’ that are causing the pain in the first place, and instead offers tools for focusing your attention on other things.

This is only an initial foray into studies on chronic pain conditions and psychological distress, but I hope to continue to read and learn more.

Book Review: ‘The Body Keeps the Score’ by Bessel van der Kolk

This is a fantastic book about psychiatry, trauma, PTSD, Complex-PTSD, and recovery.

It is rare that a book written for such a wide audience manages to be both accessible and hugely informative. It references (seemingly) all of the relevant and up-to-date research, brings in case studies for more concrete examples and understanding, and keeps the language clear with no unnecessary jargon.

Bessel van der Kolk is a psychiatrist who specialises in trauma and how the environment impacts the body’s physiology. He mounts a very persuasive argument against any kind of mind-body dualism and shows that the things we go through leave marks on our biology, and influence how we approach things in the future.

I really appreciate his double-focus, on both the lives people lead and the actual situations that cause the psychological problems (essentially he takes people’s trauma seriously), and how this impacts their biology. He shows that we would be foolish to ignore either the environmental factors (a term which is far too broad and vague, anyway) and the biological ones. But the direction that his argument goes in (environment influences biology) also suggests that the focus of treatment should be on creating a new safe environments (so: relationships) for the person to heal in; rather than aiming only to fix the biology, which would be treating the consequences and not the cause…

He argues for a participatory approach in the healing process, against the notion of passive ‘patients’ who must be cured by experts, acknowledging that the role individuals take in their recovery has significant impacts on how the recovery goes. This person-centred and identity focus I think is a useful counter to the standardising and universalising biomedical trend, which gives everyone drugs and expects that to be enough to heal them. Drugs are particularly ineffective for curing PTSD and C-PTSD, so I think his expertise in this area is particularly useful and hopefully could be applied to other forms of psychological distress.

Another of the interesting arguments that his book put forward is that to help someone recover from trauma, it sometimes isn’t right (or enough) to simply to get them to open up about it in language first. If their body is still stuck in the ‘fight, flight or freeze’ mode, and gets either excessively stressed or dissociated when remembering the event, it will do no good to keep getting the person to talk about it. The biology will overpower the talk-therapy, and they won’t be able to process it in a calm and reflective manner, and won’t be able to acknowledge that it is now in the past and no longer a threat. This is why he is such a strong advocate for trauma-informed yoga, because he finds that it can be hugely successful in calming down the body (learning to breathe deeply, feel the sensations of your body in the present…) which is the necessary first step before then talking about the traumatic event.
But, he does also believe that it is absolutely necessary to then find words for feelings and events once the individual is in a safe enough feeling-state to do so. Then they can gain some distance and perspective on the event which will help them process it more ‘rationally’, with the more developed and less instinctive parts of the brain.

Here are some quotes from the conclusion that I found particularly interesting:
‘We are fundamentally social creatures – our brains are wired to foster working and playing together. Trauma devastates the social-engagement system and interferes with cooperation, nurturing, and the ability to function as a productive member of the clan. In this book we have seen how many mental health problems, from drug addiction to self-injurious behaviour, start off as attempts to cope with emotions that became unbearable because of a lack of adequate human contact and support.’
‘Our increasing use of drugs to treat these conditions doesn’t address the real issues: What are these patients trying to cope with? What are their internal or external resources? How do they calm themselves down? Do they have caring relationships with their bodies, and what do they do to cultivate a physical sense of power, vitality, and relaxation? … Do they have a sense of purpose? What are they good at? How can we help them feel in charge of their lives?’ (349-350).
‘As long as we feel safely held in the hearts and minds of the people who love us, we will climb mountains and cross deserts and stay up all night to finish projects … But if we feel abandoned, worthless, or invisible, nothing seems to matter. Fear destroys curiosity and playfulness.’ (350)

As someone who wrote their BSc Psychology dissertation on attachment theory, I am very strongly inclined to think that so many of our psychological problems and mental health issues stem from poor attachment system functioning. The reasons can be many (societal, financial, psychological, biological), but if an individual doesn’t feel that they have a ‘secure base’ of loving relationships from which to explore, I think it’s incredibly likely that life will feel a bit too much and not something they can adequately cope with, and any kind of mental health issue might develop…