Knowing about your condition can be a double edged sword, as illustrated by Ian Jack in @guardian yesterday — read here. Jack describes his experience of anosmia, the loss of the sense of smell. However, he goes on to describe how reading an article about anosmia made him consider ‘that I was in fact a member of a disabled and neglected group’, which he was ‘happier not to think about’.
The piece raises a number of important issues. Firstly that losing one of our five senses has an impact on our ability to predict the world and hence our lived experience, secondly that this impact can be underestimated by the individual in some cases and by society looking in, and thirdly that knowledge about a problem does not always help per se. Everyday people are learning that they have a condition, generally more accurately from a diagnostician and more precariously via the Internet. The latter is of course quite able to ‘diagnose’ in response to a list of words (symptoms) but the danger is that the list of possibilities still require adjudication, and it is the same person choosing an answer. It is a little like your doctor giving you a list of conditions to choose from when you tell him your symptoms, and you then choose the most sinister. Oh yes, and the computer, device, phone etc. does not examine you or try to understand you as an individual.
I write and speak regularly on the fact that people need to understand their pain in order to know that they can overcome their pain, with an emphasis on both the quality of the explanation (teaching – learning scenario) and the context in which the information is delivered. Reading an article as did Ian Jack, or finding some information online, or someone else sharing their experiences must all be put into context. These are other people’s stories and not yours is the first point, so extrapolating to your unique story has its dangers unless you have someone to clarify and provide perspective — that’s my job. Spending time giving meaning to the person’s story is important, identifying the key points and explaining what can happen in order to arrive at the present moment. Nothing happens in isolation because we have had a prior experience to flavour this one. Looking back, however, can be done in an objective way, recognising the limits of the reliability of our memory, yet it is the question ‘what do I think and do now?’ that is important.
A common scenario in modern healthcare is the interpretation of the scan result for musculoskeletal pain. Back pain for example, frequently leads to an MRI scan to look for a structure to explain the pain. Yet pain cannot be seen. You can see the state of the discs and joints according to a picture taken in a moment (a snapshot), but what does this tell you about the person’s lived experience of pain? One is objective (a picture) and one is subjective (pain). But how often is the disc or joint used to explain pain as the healthcare professional shows the person (patient) the picture, pointing to the culprit on a screen? Now that the person has ‘seen’ the picture, it becomes part of the story with the solution becoming the need to do something to that disc or joint. They have new information that is now influencing their outcome, yet they will not be thinking this as it is all part of the subconscious processing that shapes our thinking and experiences. However, when a scan result is used within the context of modern pain science, we can use the information to sculpt a positive outlook but this relies upon time with the person to fully explain and answer questions as opposed to finding an article online or in the media when thoughts arise with no-one to qualify or ask. Thoughts interpreted as threatening have protective consequences from pain to feelings of stress and anxiety.
In summary, we need to be judicious about the information we expose ourselves to and use rational thinking to determine the relevance to ourselves. We are all utterly unique with our own stories and lived experiences, so when you pick up an article, bear this in mind. You would also be wise to write down any concerns or questions and ask a trusted adviser to put perspective on those thoughts so that they form part of how you overcome your problem.