"Medically Unexplained Physical Symptoms" (MUPS) refers to a collection of symptoms that have no known cause. Some unexplained symptoms are well recognised and have been given names: Chronic Fatigue Syndrome (CFS), Fibromyalgia (FMS), Irritable Bowel Syndrome (IBS). Other people remain undiagnosed for years or even decades, unable to access the information and support groups that available for conditions that have a name. Both the named and un-named conditions remain beset by the reputation of being somehow less genuine because their cause has not be found.
While I will touch upon CFS and other syndromes that have been given a name, I wish to emphasise the dilemma of people with undiagnosed conditions. These people have no where to turn for information and support and in my travels as a Carer through consultants rooms and the internet too, talking to research professionals at universities, and ‘being there’ in any way I can for my partner, I have gathered a wealth of information that I hope will be of use. I have tried to talk to people about the impact of not having a diagnosis, and the idea is sometimes impossible for them to get their heads around. They think that I am talking about a short period of uncertainty because 'obviously' you will get better soon, or the doctor's will locate the problem. The concept of having a long-term illness without any answers (let alone a route to recovery!) is, on the whole, an alien concept.
MUS is surprisingly common. But people who suffer without a diagnosis, or without any known cause for their symptoms, fall well outside our idea of what it means to be ill. The common perception is that when we get ill, we enter into a period of illness that has a beginning, middle and end, and we get given support and information to help us be ‘good’ at managing our period of ill health. On the whole we are aware that some people do not recover, and there is not a cure for everything. It is expected however that there will be information available to identify the source and nature of long-term and/or terminal illness. That information acts as a reassurance to both the patient and the people they come into contact with.
But what happens if your pattern of symptoms doesn't have a name? What happens if you don't know what is causing your symptoms? What happens if you don't get better? Sometimes there is not even a clear beginning, middle, or end to a persons illness experience making it very hard for these patients to understand, not to mention express what is going on for them.
To quote the New Medicine Group website, “GPs estimate that about 15% of the people they see have medically unexplained physical symptoms (MUPS); specialists say it can be more than 60% of the people in out patient departments.” Some cynical GPs think nothing is wrong with this patient group, but this demonstrates a flaw in their training and the role they see themselves playing. Many other GPs agree they have a central role in providing reassurance and psychological support to this patient group, as well as being a gate-keeper to secondary care (e.g. specialists and services requiring referral).
There are psychological, social, and practical implications of not having a diagnostic label because diagnosis acts as a passport giving you access to information, support, and privacy. Most of us assume that if our bodies go wrong the medical profession have the technology and training to locate and understand the problem. In reality, modern western medicine has its limits and there are a startling number of people who live for years, even decades, without sufficient information about their condition. These patients don't get a descriptive title that clearly identifies their symptoms as valid and comprehensible, and they get little understanding and support from the health system that provides few services for this sort of chronic health problem. These patients are rarely offered a way of 'making sense of' their symptoms and may feel very isolated, unable to explain to the outside world why, despite their efforts, they aren't recovering any semblance of health.
I first found out about the term “Medically Unexplained Symptoms” in 2007 from a body of research by Dr Sarah Nettleton. Although MUS is deeply unsatisfactory as a term (inadvertently giving the impression that there is no legitimate medical reason that the patient feels ill) it was a positive moment: I had found research that documented the experience of patients with long-term, undiagnosed conditions. Most importantly it gave me a language with which to refer to the problems that beset MUS patients in appointments with GPs/consultants. I look forward to sharing my discoveries with you here in this series.
Sources, and relevant links:
New Medicine Group
Guardian Wellbeing story, MUS case-studies
Posts in this Series:
