Tag / Diagnosis

by Isla

Pain clinic

In which I’m not very funny

Last week I went along to a pain clinic appointment.

Middle-aged, male doctor, blunt opener:

‘I’m going to be honest with you. I don’t know why you’re here.’

Not the most auspicious start.

The barrage of honesty continued. I had the wrong type of pain (he only does localised pain – one joint, for preference), and I was still under investigation so shouldn’t have been sent to him.

He’d mis-read my notes and wasn’t all that happy when I pointed out the mix up (‘I don’t make things up. I don’t lie.’) I upped the amount of solicitousness in my tone and added a hefty sprinkle of ‘I’m so sorry’, and ‘of course’.

I queried whether he had any advice on painkillers, and he assumed I was trying to scalp him for opiates:

‘You shouldn’t be taking opiates. I don’t want to see another drug-addled patient walking through my door.’

Pause.

I made an attempt to explain that opiates were all I’ve got, given that we don’t have a way to treat the muscle behaviour because we don’t know what’s going on.

‘My best advice is don’t lose your job. And don’t take opiates.’

Pause.

‘You’re well educated? You google everything? Know things better than your consultants?’

He’d nailed that one – I’m an inveterate googler, but I’m also wise enough to go into medical appointments with an open mind. It was rapidly closing in this particular appointment.

‘You could join a Pain Management Programme. There’s one here, but we don’t have a psychologist and you need a good psychologist, that’s what you really need.’

It was around this point that I crumpled into tears, thereby annoyingly underlining his point.

The nurse was sent for some hand towels (I foolishly seem to see consultants without tissues to hand), and the tone rapidly shifted from ‘honesty’ to ‘I really wish I could do something for you.’

He described me as ‘delightful’ and ‘distressed’ in his letter to my GP. I feel like I stepped into another century.

Dead end.

by Isla

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.