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Believing Chronic Pain Sufferers

January 25th, 2021

Being seen and believed with chronic pain

Here’s the deal - chronic pain is no joke. It’s nothing to shrug off, to downplay, or to disregard. But many of us battling chronic pain on the daily also push against an incoming tide of disbelief and disregard from family, friends, and members of our so-called support community.


I consider myself lucky because my wife believes me when I say I’m in pain, even if I struggle to describe it, and even if it’s difficult to understand. But that doesn’t mean I haven’t run into my share of disbelievers in the form of family members, acquaintances, or even physicians.


All Pain is Valid

While I’m talking specifically here about the realities of chronic pain, I want to first make clear that all pain is valid. Chronic pain is different from acute pain, but all pain is real and experienced. I wholeheartedly condemn those who use one type of pain as an excuse to disregard the pain of others, or who, whether consciously or not, invalidate the pain of others by ranking their pain as worse.

In the end, I see disbelief as ultimately a failure of imagination. But just because you personally have not experienced chronic pain does not mean that it’s not real and that it’s not experienced exactly how it’s described.

I’m working through some acute pain from an injury to my knee as I type. This pain persistently chips away at my ability to focus, vying for my attention in the same way that my chronic joint pain does. The fact of the matter is that pain, acute or chronic, is not swayed one way or another by our preconceptions of it. Perhaps one of the main differences between acute and chronic pain is time, or I should say duration. But even if we could predict the duration of a bout of acute pain, knowing it’s end date does not influence the way we experience the pain at its worst.


The Challenge of Describing Chronic Pain

With that said, chronic pain is a beast that’s hard to describe and equally hard to understand. It’s not something that can be attributed to a specific event in time, or to a single cause (unless we think of the cause as the chronic disease itself). It doesn’t fall squarely within the lines.


the life of a chronic pain sufferer

For instance, I occasionally experience flare-ups of my Ankylosing Spondylitis. These flare-ups are experienced within the realm of pain. When my illness turns up the heat, I’m submerged in aches of varying intensity. When my illness is more mild-mannered, the aches are localized to specific joints, however during a flare-up I cannot determine where the pain begins or ends. I would need to zip myself into a full-body heating pad to find some relief from the signals broadcasting on all channels of my nervous system.


And while I can often predict when a flare-up is imminent, I can’t always link that flare-up with an incident or event, something I did or didn’t do to cause this increase in pain and disease activity. Sometimes my pain increases from ‘doing too much’ in a day, but what constitutes as ‘too much’ can and does vary by the day.


Chronic Pain Credibility

The unpredictability of chronic pain, along with its constant nature, adds to the challenge of explaining. In a way, I can see how its unpredictability leaves room for doubt. After all, what sense does it make if I do the same exact routine day in and day out, yet one day I describe intense lower back pain, the next day I’m relatively pain-free, day three I’m working through aches in my right shoulder and left knee, and the following day I’m in such agonizing, full-body pain that I cannot make it through my routine? There’s very little to warrant credibility there.


Yet that’s just how chronic pain operates sometimes. Then pile on top of that the fact that this sequence of fluctuating, inconsistent pain doesn’t just last for weeks and months--it lingers for a lifetime. There’s little logic in it.


But that’s also part of the grand scheme--that something’s amiss in the body of a chronic pain sufferer, enough that it causes these indescribable, incomprehensible effects. While chronic pain doesn’t always make sense, it does exist, and persist, and affect the daily lives of millions of people.


Chronic pain is lonely and isolating


Chronic Pain is Real

If you know someone who battles chronic pain, you probably understand (at least partially) what I’m describing. And if you know someone battling this frustrating, sometimes agonizing symptom and you don’t believe them when they discuss their pain, I have one question: why would someone make this shit up?


Chronic pain is real, it’s experienced, and it doesn’t always follow logical patterns. On top of that, it’s distressing. It takes a mental toll on a person, which is why it’s so important to believe the words of chronic pain sufferers. It’s equally important to respond with empathy. No one, in the depths of a flare-up, wants unsolicited advice from someone who has never experienced chronic pain before. No one in that state wants to hear about theoretical alternative therapies or the potential life-altering effects of exercising more.


Validation, on the other hand, is worthwhile because it helps break through the fog of guilt us chronic pain sufferers might feel when we’re unable to live up to expectations or complete our to-do list for the umpteenth time. Expressing belief, even if it’s not accompanied by understanding, can pervade the loneliness that typically accompanies chronic illness.


In the end, I see disbelief as ultimately a failure of imagination. But just because you personally have not experienced chronic pain does not mean that it’s not real and that it’s not experienced exactly how it’s described. So give up your skepticism and your desire to disregard expressions of pain. Believing chronic pain sufferers doesn’t cost you anything, but it does have a spectacular return on investment.


-Jessica

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