By Mia Maysack, PNN Columnist 

Someone once asked me, "If there were one thing to educate the public about on how people in pain live, what would it be?"  

My first thought was, “Where should I start?" 

By definition, chronic pain is pain that persists for at least three months despite medication or treatment. The pain may be caused by any number of medical conditions, diseases, trauma or injury.

Some of us live with chronic pain that most “healthy” people can’t begin to relate to. It’s not like your last stomach flu, hangover, stubbed toe or whack on your not-so-funny bone. You’ll quickly get over those.

Consider the possibility of having pain that never ends. You try countless therapies, medications and changes in lifestyle that may help for a short time, but are far from a cure-all. Many of the suggestions you get -- whether asked for or not -- also haven't proven viable.   

Although I'm fortunate to be alive, migraines and cluster headaches caused by a traumatic brain injury have been my daily companions for over two decades. There’s not much I can do to ease my head pain, and I went through many years experimenting with treatments that only made things worse.      

Some scary statistical facts about pain:

• About 20% of American adults – 50.2 million people – have chronic pain, 19.6 million of which have “high-impact” pain that limits their life and work activities 

• Chronic pain raises the risk of many other health problems, including dementia, high blood pressure, insomnia, anxiety and depression

• The average veterinary student in the United States get five times more education hours focused on treating pain in animals than a medical student does in treating humans

• Even though chronic pain is the number one reason for accessing healthcare and the leading cause of disability, only two percent of the National Institute of Health’s budget goes to pain research  

Let's go back to the thought of a sprained ankle, toothache, seasonal cold or a mild burn. Imagine coming across something that actually helped ease that hardship, but having it taken from away suddenly, and then being refused or abandoned as a patient. That’s what many of us with pain have experienced.

In the face of all this, there does come a point when it's our responsibility to raise awareness about pain and to help find solutions that we all desperately want. This requires some effort on our end.  And it's disheartening to encounter people who won't lift a finger to work towards a solution to our own causes. 

Recently I was discussing important legislation with other individuals living with pain, who all said they were personally impacted by the issue. When I proceeded to explain the next steps needed regarding policy, I saw their eyes glaze over. One even whipped out their phone in disinterest, while everyone else seemingly groaned in discontent.  Even in our own community, we don’t always show up for the sake of ourselves or each other.

It goes without saying that not everyone is interested in or even able to travel to Washington DC for a congressional meeting. The same is true for attending rallies, running support groups, or just sharing their story on a public forum. But someone has to. There are things we can do that will help us inch closer toward change and relief for millions. 

Our individual experiences are valuable and whether you live in a state of physical hurt or not, we must begin to care more about one another on a fundamental level.  Pain is ultimately something that'll impact everyone. Why wait for pain to happen to you? Why accept the fact that it already has?  

One of the biggest myths is that there's only certain acceptable ways to advocate for ourselves or each other. In actuality, there's only one unacceptable thing to do. And that is nothing. 

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.