The Top 5 Questions Pain Patients Want Answered

By Pat Akerberg, Columnist

I’m sure you recognize them, the questions that invade your mind and take you down rabbit holes digging for real answers.  With our worlds turned upside down by chronic pain and/or illness, we want the kind of answers that make sense of our new reality.  We’re convinced finding those answers will somehow turn us right side up again.

So we ask various versions of why, how, what, where, and who questions.

Perhaps the question that haunts the most is the slippery “Why?” question.  It’s not long after you have a name for the source of your suffering that you ask, “Why me? Why did this happen to me?”  That question makes it very personal, like we were victims purposely targeted. 

It’s as if we believed that we were somehow immune, operating in a protective bubble that shielded us from all potential harm.  And when that bubble burst, an unexpected, unthinkable, and undeserved betrayal was visited upon us.

Why questions are slippery because they hold us captive in the lore that there is an answer that can be known with absolute certainty.  And they presume that having such an answer in hand would create a better outcome or even change it.   More often than not, why questions simply frustrate because most speculations masquerading as answers feel inadequate, unsatisfactory, and leave us wanting something more definitive.

One day I asked myself exactly who was I expecting to give me the answer to my “Why me?” question.  Was there anyone who could tell me with reliable authority whether it was my genetics that set me up for trigeminal neuralgia? Or was it my severe auto accident, a blood vessel pressing on my trigeminal nerve, the hefty amount of stress in my life, or a combination of all of those factors? 

The realization finally dawned that I wasn’t going to get the actual answer to “Why me?”

So with the biggest question unanswered, I moved on to the next questions.

If not why, then how did this happen to me?  How questions beg for specific factors that explain how the chronic illness came about, how the horrible pain started.

Sometimes I still ask myself how it is that I didn’t see or feel this coming, as if I could have.

Without one clear precipitating event, how questions have a tendency to defy real answers too, so they begin to give way to the more practical inquiries.  Once I crossed over into the “what” questions, being more proactive became possible. 

What questions identify potential actions that we can consider taking.  I started by asking, “What now?”  What options do I have?  What kind of specialist do I need to see?  What medications and/or treatments have the best track record?  What kinds of risks might be involved?  I searched for what I could read to help me learn and understand more about my condition.

Each of those what questions laid out paths to pursue for my neurological disorder and I went down all of them.  Some worked better than others and some failed me completely, but that wasn’t from lack of trying.

The what questions that aren’t very helpful are the “What if?” ones.  That’s because in my experience they tend to dredge up fears of worst-case scenarios or self recrimination.  Asking yourself “What if I had only (fill in the blank)” is an example of punishing self doubt for impossible to forecast outcomes.

Certain answers to what questions will automatically cause us to ask “where” questions.  Where questions are those that attempt to pinpoint a location or direction for us to investigate. 

For instance, if there’s a specific treatment or surgery, where are the best medical centers for those?  Or, if medication or treatment didn’t work, it’s time to tale stock and ask “Where do I go from here?”  Sometimes we can benefit by asking where to find support groups (in person or online) to connect with people dealing with the same issue.

When at an impasse, we find ourselves stepping back to process all we’ve been through by asking ourselves where we fit now or where our situation is taking us.

It seems that where questions naturally fold into questions that ask about who.  Who questions have a direct purpose; they are asked to locate an expert with a solid track record that might offer help.    

We ask others with successful outcomes who they were treated by or who operated on them.  We wonder who we will relate to the most when we join a support group or who might offer the best help or resources for assistance.  

Over time, I even came to wonder who among my dwindling friends would stay with me for the long haul. 

However, the most important who question that I continue to ponder now is, “Who am I now that this progressive, painful disorder took over my life?”

I would say that the jury is still out on that answer.  But I’m working on it, as I’m sure many of you are too.  And it’s not surprising that sorting out answers to an internal core question like that would involve asking ourselves those same five questions in search of meaningful answers we can accept:

1)  Why would I think I was immune from harm?

2)  What have I learned that I wouldn’t have otherwise?

3)  Who do I want to be in response to this life change?

4)  Where are these important insights taking me now?

5)  How do I choose to reframe this experience and my purpose?

Pat Akerberg suffers from trigeminal neuralgia, a rare facial pain disorder. Pat is a member of the TNA Facial Pain Association and serves as a moderator for their online support forum. She is also a supporter of the Trigeminal Neuralgia Research Foundation.

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.