These are my thoughts about how arthrofibrosis and chronic pain show the limitations and shadows of the healthcare system. I feel that too often people are treated as an object and the doctors and (strange enough) often also the PTs see themselves as the “fixing authorities”, so the patient perspective and experience is given very little significance - this even although there have been advances in health science and the promotion of patient empowerment, patient involvement etc within healthcare.
And I think the newest pain research is being misused. There is a jump to conclusions when the pain research is added to the old paradigms about pain management. The big insights showing that how individuals interpretate pain influences the pain experience is used against them in a kind of mis-reasoning. Just because the experience of pain is a not a direct one to one thing of stimulus equals experience, but is mediated through a nervous system that includes psychological factors, doesn’t mean the patient’s report doesn’t hold important information. Yes, the nervous system can trick the perception of pain, and the psychological interpretation can be individual and yes some individuals are more accurate than others, but there is no reason not to listen to, and being ready to learn from, the patient.
What I always find strange is that I’m seldom met with true interest or curiosity, and the relationship between clinician and patient is seldom seen as a collaboration whose goal is the patient’s quality of life. This is why I have been occupied with how the “curative” clinicians could learn from the “palliative” field, where quality of life is paramount.
And then there is this binary idea of soma (body) and psyche - it’s of course very important in science to distinguish between objective and subjective, but clinicians are often very uncomfortable with the affective (emotional) reaction to chronic pain even although it’s so natural - both at a sensory level and an existential level. When experiencing pain and physical limitations you are experiencing torture, and your whole future, your relations, talents and identity is taken hostage. But if you show some mourning you are considered to be compromised by psychological issues, and this now is not a consequence of pain and disability but vice versa - it’s the reason for your problem. Because unfortunately, the newest brain research is misused to say, “it’s all in your head”, reducing all somatic experiences that can’t be explained to this black box of “psychological stuff”. Which implies a fragile personality or a loser in our competitive society.
So, when you don’t fit into their explanatory scheme you are treated like an outcast that threatens their paradigm of always being able to fix the problem. Sadly, this tendency is gender biased too, and emotional women are rapidly put in the “having a psychological problem” category. So unfair.
A huge problem related to this “fixing” regimen is that clinicians miss the importance of involving the patient in the problem in order to optimize their future outcomes. Here they could use the newest pain research properly, so the patient can be the best caregiver for their “trauma”, instead just being a victim or being judged. But too often this doesn’t happen despite the movement to put the patient in the centre of their treatment and involving the patient in the decision making.
It will take a long time to change the relationship between patient and health care staff. BUT my hope is that AI will be a tremendous game changer and speed up this collaborative partnership. AI will threaten the authority of doctors, and in the future their legitimacy will lie in their ability to understand what interventions and mindsets are serving the patient, in a more holistic view, that AI will make available to everybody. So, the ultimate authority will not be “having read x numbers of books” (AI will always win) or qualifications but it will become the interpretation of the patients perspective: Being careful, paying full attention to patient’s stories, including their feelings and experiences.
Until then - we must insist on our dignity even we are the patient who’s reality don’t confirm the authority of the fixing guy!
All the best🙏
Katrine
Thank you, Katrine, this is well-put and your explanation should help a lot of people realise that they're not alone, and help them to navigate this serious problem. The impact that pain has on mental health is very underappreciated. For example, there was a story recently about an ex-army veteran who sustained a back injury during duty, he developed severe anxiety as a result of the chronic pain. He was lucky though, he had nerve ablation that has fixed it.
Thanks again for sharing your thoughts and experiences.