Writing Prompts: Experience vs Experience

When I think of the above image, I am drawn to a post made a few weeks ago, by my friend Bruce Gerencser. Bruce would be the first to tell you that he is in constant, chronic pain. He also understands his own body, and his own needs, having managed his conditions for many years.

Doctors obviously go through rigorous training, and over the years they will build up an understanding of various ailments that goes far beyond the average person’s understanding. If I were to go to my local GP about say, a damaged finger, I would expect the doctor to know more about the construct of my finger, of the bones and ligaments that comprise my finger, and what would be the best course of treatment. Likewise, if I were bitten by a False Widow spider (by all accounts a painful experience), I’d expect the doctor to have more knowledge when it comes to treatment.

That said, if I lived with a condition, day in, day out, for many years, I’d not merely know what the condition meant from an intellectual position, I’d have a deep feel for what it means for my day-to-day life. If I were in non-stop pain from dawn till dusk, and then unable to properly sleep as a result, I would not expect a doctor to trivialise my experience.

Doctors are under pressure, and in the UK at least, they are often under-valued, but by the same token, some of them think they can lecture away, and be dismissive. There are many stories where a female patient sees a male doctor, and that doctor is hasty in their dismissal of the woman’s concerns, especially if those concerns relate to hormonal issues, or monthly matters, or anything to do with ‘down there’.

In more general terms, the medical profession doesn’t understand chronic pain. Most of those who control the flow of pain medication are not in chronic pain, and combined with a stigma that chronic pain sufferers are in fact merely drug addicts, this creates far more problems than it solves. To quote Bruce:

My doctor prescribes me a thirty-day prescription of one-hundred-fifty tablets every twenty-nine days. This means I have an extra five tablets each month. Five. Not twenty. Not fifty. Five. These five tablets provided me a monthly buffer in case of a pharmacy problem or I have a really, really, really, really, really bad pain day. Five tablets. Unbeknownst to me, the pharmacy was tracking these five extra tablets, and today was the magic day when they decided to bring the hammer down on me.

The pharmacy will not automatically fill a narcotics refill. Even though my doctor digitally sends the script to them, I must call them to have it filled. That’s what I did today, only to find out that they would not fill my prescription until August thirteenth. Five days of no medication. I have nine tablets on hand, so I have to cut my medication by seventy-five percent — two tablets a day. Why? Five tablets. Five tablets each month for six months is thirty tablets, the pharmacist informed me. I tried to explain things to her, but it mattered not. All she saw is what she called a “retention issue.” Those tablets I “retained” were actually used when needed. Long-term chronic pain sufferers learn to manage their narcotic meds, adapting usage to pain levels. None of this matters. Fundamentalism rules supreme when it comes to prescribing pain medications. “These are the rules. Obey. Don’t obey, we will punish you.”

Does anyone at the pharmacy, or within the system, actually know Bruce, and what he goes through? They do not see him, nor others like him, as people. They do not understand the struggles of chronic pain, and they do not want to understand.

No two human beings are alike. No two human beings will respond to the same pain medication in the same way. It is ignorant to pretend every condition can be treated in the same for every person.

Bruce isn’t wrong when he references the spectre of fundamentalist thinking. The temptation – based on ignorance and arrogance – that users of pain medication are actually drug-addled abusers of the system is all too easy for self-righteous, pretentious fools to give into. It even leads some to make spurious, unsubstantiated claims.

If a government has an obligation to prevent people from abusing medications, do they not also have a responsibility to ensure people do not needlessly suffer from pain, especially when the means to ease that pain exists? The complicated web of rules and systems seems to hinder patients with legitimate needs, and it is not whining to point this out, even if some arrogant, ignorant types out there might say otherwise.

I would never presume to tell Bruce that I know his needs more than he himself does, yet this is what the arrogant fundie is doing. Experience matters. That’s something people should consider before spouting off.

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