The MUPS-Files

In which we discuss MUPS (which isn’t a puppy with a suspiciously lumpy neck)

There’s a basement under the Great Hall of Diagnosis. It’s never talked about and the basement door can only be reached by traversing the myriad doors and corridors of the upper floors, with their neat, rectangular, printed labels (Erythromelalgia – Gonorrhea – Vitiligo – Yellow Fever – Ichthyosis).

The label on the basement door is handwritten with an attempt to look authoritative – right up until the writer realised they were running out of space and the letters began to get smaller and smaller:

‘Medically Unexplained Physical Symptoms (MUPS)’

Underneath, on a scrappier piece of paper, someone else has scrawled in blobby biro,

‘Welcome to the X-Files’

The basement’s occupants are numerous and varied. Every time medical testing fails to allocate a condition to one of the more reputable rooms above, it gets dumped in the basement.

The patient, meanwhile, receives the good/bad news that there isn’t a diagnosis. On the one hand, you’re not dying more quickly than you ought to be, as far as medical science can tell. On the other hand, we can’t find a reason for those physical symptoms, so we can’t treat them.

The unfortunate subtext is that there isn’t a real reason for the symptoms. There’s a sneaking suggestion that the cause of the symptoms is something psychological rather than physical, of the mind rather than the body.

The mind is a product of the body, of course, and undoubtedly can induce and influence the body’s behaviour. And yet it seems curious that this is the only explanation given weight. There is rarely any mention of the possibility that medical science might develop and learn more, and eventually figure out that there is a determinable cause for some of these conditions.

Conditions like Fibromyalgia and Chronic Fatigue are finally making the journey from the MUPS basement to newly decorated rooms with printed labels on the floors above. Evidence has been found and explanations have been developed following extensive research. Medicine is acknowledging that there is something real to find out about, and is finally validating the experience of all those people who were told it was in their minds.

On two occasions, I’ve been the patient listening to a consultant say they can’t find anything wrong. On both occasions, I nod, and silence falls. I wait for a suggestion of a next step, a new test or another referral, but their benign smiles remain impossibly fixed. I begin to feel flutters of frantic panic, a desperation for something, anything to hold on to, a gasp of hope. They give me nothing.

I wonder if they’re waiting for me to say the words for them, ‘There’s nothing we can do,’ and see myself out. I eventually received a ‘Good luck’ from one of them, but it tasted bitter in its emptiness.

Being designated to the MUPS basement leaves you unlabelled, open to the slow erosion of society’s slurs for those who lack a medically approved stamp: lazy, attention seeking, hysterical, weak, a drain on resources.

I’d like to get out of the basement one day.

Hello Hyde

In which we meet a mysterious stranger

I have things a good deal easier than a lot of people. I don’t have continual, endless pain, I don’t have a permanent physical disability, and my brain more or less manages its chemical levels without too much intervention.

Some of the time, I’m okay. I can function, push through a bit of fatigue and get on with things.

But then I get a timely reminder: Mister Hyde is never far from the surface.

He emerges when I’m sitting in a meeting and twisted to the side, or I’ve been for a walk, or I’ve been sitting in a car or bus, or I’ve done something physical, or become stressed or excited or upset, or on a few occasions, he’s emerged when I’ve been sleeping – which is possibly his idea of humour.

Hyde arrives with an insidious cramping that creeps up and down my right side – from the muscles in my right butt cheek, all the way up my back, through my shoulder and pec, up my neck, and across the right side of my face.

He lingers and worms and burrows, pulling on nerves until the nausea builds and the pain ramps up. He’ll occasionally abate for a bit after I vomit, always the gentleman, but slithers back after a considerate pause. Ever the tease, he sometimes crawls along my muscles to chew at my calf, a potential precursor to him buggering off.

He usually rips his way back up.

Mister Hyde tends to stick around for two or three or four days, with little rhyme or reason to his presence. He’ll shut up a bit if I manage to chug painkillers in time and keep them down, but I can feel him lingering underneath, waiting for my bloodstream to empty. I lie on the floor (hard surfaces are easier to dig your muscles against), curtains drawn, waiting for him to leave me alone.

Mister Hyde is an absolute bastard.

He arrived when I was about thirteen, a curiously literal pain in the butt that would cause me to dig my rear against seat belt holders and the corners of cupboards. He grew as I did, spreading until now he sometimes flirts with the left side of my body, cramping a shoulder muscle or digging into my neck. A reminder that there is a whole lot of unconquered territory left, and that things could be a whole lot worse.