Four years ago The Lancet published an article with the undeniably catchy title ‘The mesentery: structure, function, and role in disease.’ What was so ground-breaking about this was that its subject, the mesentery, was for the first time being acknowledged as a distinct organ within the human body. Leonardo Da Vinci had spotted it 500 years before, but scientists are by nature a cautious bunch! One of the key messages of the study was that now a new organ had been recognised, its role in disease could be explored. I assume this means that many people may have presented at their GP surgery over the years with discomfort which could not be ascribed to a particular organ. I also assume that it was often difficult to diagnose and treat these problems. But that doesn’t mean the pain and discomfort didn’t exist.
In 1952 the American Psychological Association published the first edition of a big book called ‘Diagnostic and Statistical Manual of Mental Disorders.’, or DSM for short. You may not have heard of it, but it and its four subsequent editions will almost certainly have had an effect on the life of someone close to you. The DSM is effectively the world’s handbook for health care professionals on the diagnosis of mental disorders. It’s all in there, from depression to schizophrenia, from borderline personality disorder to substance abuse.
Or rather, it’s not all in there. You see, there is always considerable debate about what should or should not be included in DSM, and it really matters. If a condition, which involves very real pain and distress, fails to be included it effectively falls off a cliff as far as many in the health care world are concerned. Reference texts are essential to busy GPs. It would be impossible to include all physical and mental illnesses in a 6 year training (actually, I believe student doctors get only 6-12 weeks of teaching in mental health, out of more than 5,500 hours of undergraduate medical study.) When faced with problems in an area in which you are not a specialist, what do you do… refer to an expert. For most professionals the ultimate expert is DSM*. If it’s not in the book, it isn’t a real condition and the pain and discomfort is either not real or due to something which is in the book. This, in my personal experience, leads to misdiagnosis and inappropriate treatment. The pain and discomfort is still there, but it is not acknowledged or it is diagnosed as something it isn’t.
One example of this is complex post-traumatic stress disorder (complex PTSD.) Many professionals have come to accept the existence of this condition in recent years. It is generally acknowledged to be the result of difficulties such as Adverse Childhood Events (ACEs) and it tends to be associated with on-going trauma, rather than single events. The symptoms are too complex and serious to go into in a blog, but suffice to say there is overlap with PTSD, which has now become a recognised and commonly used term in medicine and across society. (It is interesting to note that professionals had to fight hard to have PTSD included in DSM-III, in 1980, despite the fact that people such as war veterans had clearly been suffering from it for many years…think WWI ‘shell-shock’. Until then, it was misdiagnosed and poorly treated.) There were hopes that complex PTSD would be included in DSM-5, in 2013, but these were dashed without clear explanation. When the decision was made not to include complex PTSD in DSM-5, did the symptoms experienced by those who suffer from it go way? Obviously not! But their chance of getting appropriate treatment probably did. This probably affects the lives of tens of thousands of people in our country alone.
So, if you appeared in a doctors’ surgery in 2010 with a disease of the mesentery, there’s a pretty good chance you would be misdiagnosed and inappropriately treated. It existed, but no-one had managed to describe it in a way that the medical profession could engage with. If you present at a doctors’ surgery in 2020 with complex post-traumatic stress disorder, your experience may well be the same.
*At the point of writing, The National Institute for Health and Care Excellence (NICE) – the organisation that produces guidelines on best practice in health care – has not developed recommendations specifically for complex PTSD.