My Chronic Pain Truths

A New Meaning for Pain Awareness Month

As we say goodbye to September and hello to the in earnest days of fall, I’m thinking about Pain Awareness Month coming to a close. A month intended to elevate the national conversation about chronic pain’s impact on over 50 million people in America. Fifty million. That is a shocking number that should give us all pause. The incidence of new chronic pain cases is higher than other chronic conditions including diabetes, depression, and hypertension. As a sufferer of Thoracic Outlet Syndrome, a rare condition involving nerve entrapment and ongoing nerve pain, I laud organizations working hard to tackle this growing crisis. But for me, this Pain Awareness Month has a more personal meaning as I take my nine-year long chronic pain journey to a better place, grounded in greater understanding and acceptance of pain’s role in my life.

For several years, I worked as a health policy aide to a U.S. Senator, and we often heard from disease groups, specialty physician organizations, and other advocates during their designated awareness month. Floods of stakeholders descended on our offices in the Senate Hart building to share their message of awareness and push for change. Awareness months are often used as tools to promote a common understanding of an issue that is often misunderstood or ignored to change the narrative about a problem. They are intended to unify a group, activate stakeholders, and often used to push policymakers to take action.

As I think about where I have been and where I am going in my pain journey, I am considering how the work emphasized in awareness months applies to my own path and how all chronic pain sufferers can apply the methods of Pain Awareness Month to support development of new life approaches despite pain. Through research, a heavy chronic pain summer reading list, and deep work with my pain psychologist, I’ve landed on these top four chronic pain truths that I’m acting upon:

1.     Pain is normal. Chronic pain is not. We all understand that pain is a protective measure. If I put my hand on a hot stove, pain tells me this is bad. With chronic pain however, our brain gets “stuck”, thinking we’re in constant danger, sending pain signals even if the source of the original pain problem is gone. I’m completely oversimplifying a very complex situation involving both the body and the brain, but the punchline here is that only when we start to understand the brain’s function in pain, we can begin to have greater clarity around how and why we’re stuck in a vicious cycle of chronic pain.

2.     Addressing pain through a biopsychosocial lens is critical. My pain care up until recently involved medications, physical therapy, surgeries and other medically focused approaches. Unfortunately, no doctor ever suggested mental health supports for my pain. Only when I pursued this on my own did I start to understand the emotional toll my pain had on my life and how this toll was exacerbating my pain.

3.     Acknowledging my relationship with pain is the only way to move forward. Part of my work to find a new path despite pain has involved acknowledging my relationship with my pain. Like relationships with family, friends, and coworkers, pain relationships can be toxic. They can also involve a struggle. I recently had my pain write me a letter and I wrote back. There was anger, power dynamics, resentment, and sadness in that exchange. It unveiled a lot of what I’ve been through emotionally due to pain’s control in our relationship. But only when I recognize the relationship exists can I work on changing the narrative and taking the reins.

4.     No one is coming to fix this. We must do the hard work. When I started this path to healing it was an exploratory time. I felt no control, sad, depressed, and afraid that my life would never change. The pain was just too great, and this caused significant fear. I happened to be listening to a podcast by Mel Robbins one day where she firmly said to me, “NO ONE IS COMING!” I felt her talking directly to me, “Mara, no one is going to fix your life, your pain, the way you feel. You must decide you want another life and then do the work.” This scared the hell out of me. I thought to myself “Holy crap, no one is coming!” And this was enough to wake me up and start the road through truths 1,2 and 3 above. Yes, we need our doctors, our loved ones, but first and last, we need ourselves.

These are my four critical new and important understandings driving my work to live a healthy life despite pain. Pain Awareness Month may just be in September, but having awareness of these important truths, every day, can be the lighthouse to guide sufferers towards a horizon that offers a better outlook and quality of life.

So, this month I celebrate the efforts of all the researchers, advocates, and other chronic pain voices that are working tirelessly to push for a more promising future for those who suffer, but I also celebrate with joy my new self-awareness and self-advocacy, to change my own narrative, with greater control and hope.

Mara Baer is a health policy consultant offering services through her women-owned small business, AgoHealth, LLC. She serves as a member of the National Pain Advocacy Center’s Science and Policy Advisory Council. She has lived with Neurogenic Thoracic Outlet Syndrome or nTOS for 9 years.

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