Heroes Not Zombies

Yesterday the BBC site posted an item about a patient’s experience of having MS. It was entitled “Living with a hidden illness”

This patient, Alison Potts, says this –

The boldest outward evidence of the disease appears in my MRI scans, but no one sees those. Together they tell the story of the last 15 years, each one showing an increasing forest of lesions in my nervous system – tiny white pin pricks running up and down my spine, like the mangled sheath of a damaged electric cable interrupting the flow of nerve signals around the body. They are the roadblocks on the map of my life. The kind of MS I have does not cause paralysis or hinder my mobility. On bad days I do have problems with balance and dizziness and numbness in my hands and feet. I have difficulty doing up the buttons on my five year olds clothes and everything falls through my hands. Crockery and glassware never last long in our house. My main symptoms are hidden. The most prevalent one is fatigue. I rarely wake in the morning feeling rested – but more like I have run a marathon with a bout of heavy flu, particularly if my sleep has been disturbed. Fatigue is not another word for tiredness. It is a total shutting down of the mind and body – a barrier comes down past which you cannot move on. It puts everything I plan to do under threat.

I think this is a great piece of writing. She makes it very clear that for her (as it also is for many patients with MS) it’s invisible symptoms which cause the greatest problem – dizziness, numbness, clumsiness and fatigue, in her case. As she says, the “boldest” evidence for her disease is in the MRI scans and nobody can see them (apart from the radiologist of course!). I’ve posted before about the dubious and non-linear relationship between scans and symptoms.

How do we address a patient who has these problems? A patient whose problems are “invisible“? At least in Alison’s case there are lesions which can be revealed by technology – the “tiny white pin pricks running up and down my spine” – and this will be her ticket to being taken seriously. Sadly, countless patients present to their doctors with equally disturbing and problematic symptoms, but in the absence of “lesions” they are dismissed as “the worried well”, or the problem somehow being a psychological one. I believe this is naive. Don’t we often see a disorder of the system? of the person? (of the “complex adaptive system“?) Such problems maybe only can be known through the patients’ narratives.

If Alison didn’t tell her story nobody would have any idea what she is experiencing. Don’t we need to acknowledge that in health care, and accept that health cannot be reduced to a simple materialistic “objective” phenomenon?

I think this little example is a great one and makes a clear case for the importance of addressing the phenomena of illness rather than the lesions of disease.