Finding Meaning and Purpose While Living with Pain

By Pat Akerberg, Columnist

Have you ever wondered if your life still has meaning and purpose?

Who makes that call, you or someone else for you?  It’s an important question to consider. 

Until a recent column, I had never experienced someone else (especially in the pain community) questioning my value and purpose in life. Or challenge what I do to provide meaning to it.

The column was about freedoms I’ve lost and the alternative ones I’ve had to find since my entry into a life dominated by debilitating pain.  A reader judged my acceptance about how I’d redistribute my limited energy capacity as my being a “selfish wanker avoiding life.”

Initially, I dismissed the uninformed judgment as just that.  But since then, I’ve chosen to write about it because judging a person’s journey in life, especially someone with pain, is such an easy way out compared to working to understand the serious impact pain has on the thousands of us living with it. 

Of course, everyone is entitled to their opinion and we can agree to disagree.  However, making the choice to turn a person’s personal pain experience into a judgment designed to diminish that person is the difference between being harmful or helpful.

So even though it’s not new for pain patients to be prematurely misjudged or undeservedly labeled by those who don’t understand what they deal with, that doesn’t grant that behavior acceptability. 

From experience, I know the kind of confusion and identity questions that can happen around value and purpose when a medical issue forever changes your life, plans and dreams.   

Seven years ago, when I had brain surgery for intractable trigeminal neuralgia I became one of the rare 1% to experience the most damaging, painful and devastating irreversible complication. 

Being abruptly sidelined from my professional work and all that I thought was essential to who I was had me wrestling with the value of my altered life. When that niggling question about meaning and purpose eventually rears its head (and it surely does), most people afflicted by chronic pain tend to be hard on themselves when pain levels dictate what they can accomplish.

What I’m describing isn’t unique to me.  Hundreds of thousands of us have life changing stories to tell.  The kind of stories that typically evoke empathy and compassion, stories that catapult us into a rude awakening that nothing in life is permanent.   

During various stages of my earlier life, any questions about life’s meaning or purpose seemed to have plausible answers.  That’s probably because I was engaged in what I was supposed to be “doing” then in my socialized roles. Those earlier stages of life tend to be about identity building.  It’s a process centered on exploring, defining, and constructing ones’ direction and purpose in life.

The importance of finding direction in life is stressed early on as part of what gives our lives purpose.  In a variety of ways, our achievement-oriented culture telegraphs messages that "doing" is king, trumps "being" and determines our value, worth, and success.

It’s not always a balanced approach to the whole of our lives though.

Still, we make a concerted effort to prepare ourselves for autonomy by working hard to carve out our niches in the world. Like many of you, I pursued my goals and checked many of the boxes that spell success. But external success in business or any other endeavor doesn’t comprise the whole of our lives or all of who we are.

In mid-life when trigeminal neuralgia hit, I wasn’t ready to stop working or give up that identity.  Nor was I prepared for all the other losses that would continue to follow. Being prematurely thrust into taking stock of the meaning and purpose of life carries unusual significance.

Having to whittle down your life and reconstruct your identity is a blow. So are the losses that follow.  It can be demoralizing to admit that there’s much we can no longer “do” or handle in the same way.

Learning to befriend and value the “being” aspects of who we are takes time, encouragement, supportive people, and inner fortitude. You need to work through the internal inventory taking and conflicting dialogue that surrounds the shift in focus.

Internal hard work like that isn’t always visible or discernible to someone on the outside looking in. That’s why careless judgments or erroneous inferences often miss the mark.

Thankfully, I have been fortunate to experience the positive impact that encouragement, support, and understanding can bring at a time when it’s sorely needed. I’ve also watched hope rise, albeit a revised version, within others when they receive support from family, friends and like-minded, compassionate pain counterparts. 

That kind of unconditional human regard has solidified my belief that who we are as human beings, not just human doings, is the nucleus of what cultivates meaning and purpose in our lives. 

We become our best selves when we become aware of the kind of person we want to be and act accordingly.  Those thoughtful behavioral choices and values determine the quality of our relationships with our selves and others in our wider human circle. 

Otherwise, our unconscious choices and actions can carry unfortunate blind spots with many unintended consequences. 

What matters most to one person may matter little to another.  There’s no one-size-fits-all answer that can possibly address the personal interpretation each of us has about what’s meaningful or purposeful.  

Given that reality, whether your life holds meaning or purpose can only be your call to make.

The misplaced judgment that any one of us altered by pain is lazy or selfish is beautifully countered by poet David Whyte (in Sweet Darkness) when he writes, “Anyone or anything that does not bring you alive is too small for you.” 

Pat Akerberg suffers from trigeminal neuralgia, a rare facial pain disorder. Pat is a member of the TNA Facial Pain Association and is a supporter of the Trigeminal Neuralgia Research Foundation.

Pat draws from her extensive background as an organizational effectiveness consultant who coached and developed top executives, mobilized change initiatives, and directed communications.

The information in this column should not be considered as professional medical advice, diagnosis or treatment. It is for informational purposes only and represents the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of Pain News Network.