Strange Dance: Performing Wellness for Others

Chronic pain forces a strange dance: performing wellness for others | Psyche IdeasJude Cook – June 2020

Ten years ago, I was prescribed a non-penicillin antibiotic to clear up a routine urinary tract infection. Part of a broad group known as fluoroquinolones, the pills made me feel as dizzy as if I’d drunk the better part of a bottle of wine.

Momentary loss of motor function down one side, cranial pressure and, when I got to the accident and emergency department, blood pressure high enough to cause an imminent heart attack.

Such frightening side-effects are surprisingly common, yet doctors still prescribe these antibiotics as though they were perfectly safe.

Even though they are fine for many people, patients should be warned of these potential problems before taking them. Drugs with such awful side-effects should be prohibited unless there’s a specific reason that would make other antibiotics ineffective.

However, only after I was discharged did the real trouble kick in. A cursory look online would have told me that fluoroquinolones were linked anecdotally to a host of gothic side-effects.

The drugs are now also associated with

  • irreversible peripheral neuropathy,
  • potentially fatal liver and kidney damage,
  • hypo- and hyperglycaemia,
  • toxic psychosis, and
  • spontaneous rupture not only of tendons but also muscles, ligaments and cartilage.

My principal symptom was a deep numb ache in both legs, combined with a constant feeling that my skin was lacerated from the knees downwards, as if I had just walked through stinging nettles – a prickly deep-freeze. At worst, it felt as if a Rottweiler had its teeth around both my ankles.

Of course, I hoped these symptoms would go away. They didn’t.

I still have irreparable nerve damage in my legs and feet. Like many people, I’ve learned to live with chronic pain, but have no way to alert the outside world that I am suffering.

Perpetual pain is profoundly isolating. Its accompanying fatigue, deadening and depressing.

Until pain was my constant companion, I never fully understood how alone in our bodies we really are.

I’d never thought of this before, but this is an excellent mental image of the isolation brought about by constant pain, not only socially but also in our inner lives.

Pain takes up so much space there’s little room for other feelings.

It’s a slog – a lifelong sentence.

And this too is an excellent point: since there’s no cure, we have to face each day with our pain, and this *is* a lifelong sentence without reasonable hope for relief, except by medical pain management which usually requires strong opioid pain medication.

The most common experience of chronic pain is the inability to concentrate on what is immediately in front of you, on the task at hand, or on what people around you are saying. Your only yearning is that it should cease.

The words of Winston Smith in George Orwell’s novel 1984 are apposite here:

Of pain you could wish only one thing: that it should stop … In the face of pain there are no heroes.’

There’s a dissonance at play that feels dishonest, arising from an internalised pressure to appear well.

What’s more, I wouldn’t have felt so equivocal to pretend wellness if I didn’t have the experience of actual wellness to compare it with.

People take their cues from obvious signifiers: I didn’t use a wheelchair or walk with a stick, I didn’t wear a leg brace or limp, and my legs didn’t appear damaged: ergo, my pain must be manageable.

Of course, my first instinct had been to seek a cure.

The one constant in all these consultations, I soon found out, was the skepticism I encountered in the medical establishment.

Welcome to the world of invisible pain! Because I’ve remained relatively fit, I never expected a doctor to believe me about how much my well-exercised body was hurting.

I didn’t expect them to understand that I kept exercising even when it was painful because I was afraid of losing my fitness (hard to achieve, but extremely easy to lose without maintenance).

I always felt that it was only my muscle strength that held my body together, so I worried about losing that strength, sliding into worse pain, and then being unable to be active at all.

This surprised me, coming across as an insult to the way I experienced my own body.

This is a poignant way to describe how we feel when doctors dismiss or minimize our pain.

The way I experience my body has certainly changed from the days before my pain came to stay; it has become a burden, a frustration, and a roadblock to many activities I used to enjoy.

Yet doctors cannot see the heavy burden of chronic pain and most can’t understand all of its implication even it after we describe it.

Yet even for a white man like me, to present with pain, minus any visible symptoms, is to open himself up to being gaslit, or else summarily dismissed.

Indeed, the final rheumatologist I consulted insisted that my pain was ‘all in my mind’.

Given how the brain’s pain centres operate on a physiological level, he was right: pain literally is ‘all in the mind’. But this was not how he intended his diagnosis.

At that moment, I realised that a poet might have offered more valuable help.

Ten years later, I’m resigned to living with a chronic condition that no one can see.

None of today’s self-help regimes – from gluten-free diets to punishing workouts – help to ease my body’s malaise.

Here’s another pain patient who has learned the futility of all the “self-help” pain-relieving ideas coming from people without much pain.

Even though the authors may have achieved relief through the method they write about, this is just one individual response and by now, we know that we all have different kinds of pain that respond to different types of treatments in different people.

There seems to be no single “cure” or treatment for chronic pain that can be effective by itself, so most of us are used to collecting several somewhat helpful treatments or “tricks”.

Only by combining multiple “pain-relieving therapies” can we achieve true long-lasting relief… until we have a flare, and then nothing works are we have to hunker down in our hurt and wait for it to pass.

I learned the hard way that the body is never as robust as it seems to the outside observer.

Author: Jude Cook is an English writer whose work has appeared in The Guardian, The Spectator and New Statesman, among others. He is the author of the novels Byron Easy (2013) and Jacob’s Advice (forthcoming, 2020), and also teaches creative writing at the University of Westminster in London.

I’ve previously posted about these drugs and the danger they pose, especially to people with EDS who already have faulty collagen and thus much more likely to suffer tendon ruptures.

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