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.