Freedom: A Pain Patient’s Lost and Found

By Pat Akerberg, Columnist

Chronic pain takes away many things: our health, wealth, mobility, relationships and careers, to name a few. It’s not a stretch to consider our personal freedom as another major loss. 

Freedom is defined (according to Google) as the power to act, speak, or think as one wants without hindrance or restraint. And unrelenting pain is definitely a hindrance or restraint! 

Despite that harsh reality, there’s an implication that we still have some freedom of choice in how we react. But on those really bad days when it’s all a pain patient can do to get out of bed, the notions of freedom, choice, or power seem wholly non-applicable to us. 

Compared to being autonomous and independent, the setbacks or functional losses we experience threaten any determination or self rule we have left.  You would think that more than ever we’d err on the side of self care and triage. 

Instead, we can be unduly hard on ourselves.  Why?  We still desire to be productive in some way yet can’t be, causing guilt, frustration and even doubts about our purpose.

Even the NFL knows enough to sideline their injured players to PUP (physically unable to perform) status without shame or recrimination until they can function better.

To be kinder to ourselves, there’s an important freedom we can exercise.  We hold the power to choose how we look at freedom altogether. A more lenient twist would be to view it through the lens of the medically compromised.

That twist of perception provides us with 2 types of modified freedom.  One of them involves those things we are now “free from” and can do less of.  The other involves those that we are now “free to” do more of.   

Here are a few freedoms from certain things I have come to appreciate in my particular form of captivity with trigeminal neuralgia:

Type 1: Freedom From

  • Attending obligatory, unappealing outings
  • Taking all phone calls (talking is a huge pain trigger)
  • Trying everything suggested as my cure-in-waiting
  • Superficial small talk
  • Grocery shopping, laundry, heavy cleaning or distance driving
  • Strenuous physical exercise
  • People who choose to judge my misfortune as an inferiority and their good fortune as superiority
  • Unfulfilling, needy relationships
  • Noisy, crowded places and boisterous people
  • Educating people about my rare neurological condition, pain, etc.
  • Being the initiator, mediator or helper at large

Here are some of my freedoms to. They’re permissions that I grant to myself:

Type 2: Freedom to

  • Say no to outings, places, and activities that exact a painful price physically
  • Avoid invasive treatments and lab rat experiments
  • Express my views about the injustices surrounding inadequate pain care
  • Avoid anything that demands my energy after 4 pm
  • Not judge myself because mindfulness meditation, exercise, and other touted pain management strategies fell short for me
  • Ask for what I need and want when help is offered
  • Receive gratefully without guilt or the pressure to reciprocate if I can’t
  • Cancel appointments/plans if I am unable to keep them
  • Stay in my pajamas if I’m unable to do otherwise
  • Practice comforting self-care: baths, massage, good books, TV binging, adult coloring books, sending note cards, and an occasional indulgent dessert
  • Make an effort to look my best occasionally, even if it will work against me

It’s helpful to add to and review my list during my worst times to remind myself what freedoms I’m not missing or can give myself. 

Hopefully you’ll consider your particular Type 1 and Type 2 freedoms too and share some with us.  When we do that with each other, it expands our viewpoints and learning. 

After all, we’re each other’s “people,” the group we belong to now. And it takes our own to honestly understand the kind of work-a-rounds that we’re forced to come up with and the life quality compromises we endure.  We know how we can isolate or shield our loved ones when we’re plagued by fears, misgivings or unsettling worries.

I am telling both a lost and a found story about my modified version of freedom now.  It acknowledges that the freedoms I’ve lost have also given way to some new found gains. It’s not meant to suggest that any of this can reduce our pain or restore our undeniable losses, but at least it helps us see the glass isn’t rendered totally empty.

Sometimes it can take a revolution of sorts to hold onto to our freedom or mitigate our losses.  Mine started with giving myself permission to revolt against standardized one-size (that don’t fit all) ways of looking at important things like freedom. 

We can choose to replace any ill fitting lens with one that accounts for the unique and complex anomalies that happen to people just like us.

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.