By Mia Maysack, PNN Columnist

When living in immense amounts of pain, it can be common to regularly dismiss minor inconveniences that would greatly perturb others, if not hinder them immensely.

Speaking from personal experience, I’ve permitted medical situations to worsen due to my tolerance for ailments, as opposed to promptly treating them. What’s one more thing, right?  

But when it begins to get unmanageable and my go-to treatments aren’t working, I’m often at a loss to calm a pain flare or break a pain cycle. Sometimes I am left with no other choice than my absolute least favorite thing to do — which is go to the ER. 

Recently I was severely dehydrated, the main reason I ever visit an emergency department. Because without retaining adequate water, there can be little improvement in any of my other symptoms. I essentially have given up on the pursuit of pain relief.

It’s typical that when I convey my reasons for being at the ER -- such as days or weeks of an unbreakable migraine or a never-ending cluster headache attack -- there’s judgment about my sincerity regarding conditions that don’t present themselves as a broken bone or bleeding cut.

I recall a time before I retired from nursing, when a patient came in with severe head pain. Knowing what that is like, I ensured dimmed lighting, used a soft voice, closed the blinds, and just moved in a way that I’d appreciate if I was the one lying in the bed. Which is far more often than I’d like.   

A colleague stormed in, turned on the lights and basically shouted at the patient. He later conveyed a disbelief for the patient’s claims -- even though the oath we took includes trusting discomfort as being just as the patient describes it.

The fact of the matter is that no one is able to fully comprehend another person’s pain. And it’s not up for any of us to have a final say on what we don’t personally experience.   

For years, providers have been up in arms regarding the misuse of opioid medication, and as a result are trying to over-correct a mistake that was never the patient’s fault. It’s now impossible for many of us to receive adequate pain relief.   

This has led to a distrust in the healthcare system and is also playing a large role in the number of lost lives we’re seeing.  One of the leading causes of death is suicide. And one of the leading causes of disability is depression. There’s definitely no shortage of reasons to feel down. What’s occurring in our world is cause for chronic sadness. 

As I sat there in the ER with my shades on, while picking up on their shade, I had to use all my might to explain why I was there – telling them my history and answering their questions. There are no words to adequately explain what it’s like to go through inquisitions like that so many times. To have hundreds of appointments, spend countless hours on the phone or in waiting rooms, and fighting for a proper diagnosis. Not to mention all the trial and error treatments, and the constant “permission slip” signing of authorizations just to be seen.  

Having been through it for as long as I have, it has caused its own form of trauma, something I believe is underappreciated. There are moments when I’m not even able to bring myself to enter a medical clinic due to the impact of things like being stereotyped, not believed or even helped. 

This could obviously lead anyone to seek out some sort of way to assist or soothe on their own. That includes, but isn’t limited to, checking out of their own physical existence. I’ve felt pushed to contemplate that a number of times, which I’m not ashamed to admit. Because this needs to be talked about more.   

The healthcare system often fails to such an extent that people are left to feel as though they have no other choice than to find an exit. If only things were set up to truly be concerned about our well-being. Then suicide prevention would look a lot like harm reduction, in the form of providing basic needs like affordable housing, food security and access to mental health resources.  

The medical-industrial complex can lead a person to believe their life does not matter. I live on in spite of it and to honor those who are gone.

Mia Maysack lives with chronic migraine, cluster headache and fibromyalgia. She is the founder of Keepin’ Our Heads Up, a Facebook advocacy and support group, and Peace & Love, a wellness and life coaching practice for the chronically ill. Mia is the recipient of the International Pain Foundation’s “Hero of Hope” award for 2022.