People with Pain Matter: a Logical Response to Pain Management Issues in the United States

Or, why ‘People with Pain Matter’ is better than #PatientsNotAddicts

Trigger warnings: self-harm/suicide are discussed therein briefly. This article is mainly focused on addiction.

Back in May, I got a lot of crap for calling out a patient-led movement (trying to become an NPO) called #PatientsNotAddicts:

In essence, what the movement does is demonize our fellow patients — those suffering from addiction — in order to highlight the issues associated with chronic pain and opiate control.

As I highlight in the piece above, this is ableism in the worst way, used to project that the issues we face as chronic pain patients are worth more attention than the lives ravaged by addiction. What we should be doing, instead, is pointing out that our needs and issues also matter. We are not superior simply because we do not struggle with addiction, a mental illness.

That the patient community at large is practicing ableism against a mental illness isn’t as surprising to me as it may be to others.

As I’ve come forward with my own mental health struggles, including Post-Traumatic Stress from a childhood full of abuse and neglect, I have had negative interactions with several patients. Some have told me to even ‘get over’ the 21 years of abuse and neglect I suffered.

If only turning off the mechanical reactions associated with PTSD were as simple as ‘getting over it.’

I’ve gotten a lot of blowback for calling out the ableism associated with the online patient community when it comes to these issues. I’ve lost ‘friends’ who seemed to only be there for the good times, anyway. I’ve faced further ableism and discrimination as a result.

Thus is the life of a patient activist and advocate with a sociological social justice background.

That’s why I was so excited to see the U.S. Pain Foundation’s new initiative called People with Pain Matter.

There is a focus here of bringing our issues to light as well, not to diminish the issues faced by our fellow patients but to bring these issues to the same level.

Most of all, PwPM highlights an important issue that we often neglect to bring up:

People with pain are not given any options and do not have access to multiple disciplines to treat the whole person and reduce pain. Instead, they are being forced to buy medicines on the street or to take medication prescribed to friends or family members in order to treat their own pain. In the most tragic and extreme cases, members of our community are taking their own lives because they can no longer live with their severe pain. This is why our leaders must understand that Pain Matters.

The inadequate level of pain management in the United States ends up pushing patients to less than legal measures in order to control their pain. It can, in the long run, wind up driving many of us towards illicit drugs and addiction.

When it comes down to it, addiction and pain management are intertwined in ways that the #PatientsNotAddicts movement fails to recognize. In the end, death can often seem like the only way out for us all. Suicide or accidental death chasing pain relief with drugs aren’t isolated incidents for our community.

It’s about time we start talking about pain management as something we all face. As of 2012, the CDC estimated that almost half of all adults in the United States — 117 million people — have at least one chronic illness or disability. Not all of these require pain management, but still.

We have to stop pretending like pain management is a problem for someone else to handle. It’s time for us patients — the ones who don’t practice harmful and demeaning ableism — to help make a pain management overhaul a reality.

I hope you’ll join us.

Kirsten is a writer and chronic illness activist living in Madison, Wisconsin. She is currently working towards her Master’s degree in Health Care Administration and Patient Advocacy.

This year, she is launching an organization called Chronic Sex, highlighting how chronic illnesses and disabilities affect Quality of Life issues such as self-love, relationships, and sex. If you’re interested in helping with this project, please check out their Medium page or find the project on Patreon.

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