(Editor’s note: Pain News Network is pleased to welcome Pat Akerberg as a columnist. Pat is an executive coach and business consultant who suffers from trigeminal neuralgia, a rare facial pain disorder. She shared her story recently in a column.)
By Pat Akerberg, Columnist
Even though we can’t see some things, they still exist nonetheless. Take imperceptible things like belief, faith, hope, or even the air that we breathe. Our indirect experience of those things comes from a hidden world. I suppose we could view their invisibility as either a blessing or a burden.
Sometimes invisibility is a deliberate strategy intended to hide or protect. I readily count make-up as a blessing designed to hide or conceal. Military clothing is a tactic borrowed from nature that camouflages for protection.
The question that I ask is posed in the context of living with invisible chronic illness and/or pain, certainly not felt indirectly or deliberately designed.
So ask yourself: Is the invisible illness and pain that you live with a blessing or a burden?
I’d have to answer “yes” to both blessing and burden. It’s not either one or the other for me; it’s both -- a burden that also offers some blessings.
In the burden category, explaining my neurological disorder to raise awareness and educate others can require energy that I don’t always have. This is especially true if you have a rare illness like mine that triggers unseen pain when you speak.
It’s a real Catch-22, because emotionally I desire the understanding. However, there’s a high price physically in trying to get some level of it.
Then there are the not always successful attempts to find an effective way of answering the oft dreaded questions, like:
How are you?
Are you feeling better now (or yet)?
You don’t seem to be getting better. Have you thought of trying (fill in the blank)?
Six years later and my continual test drives of better ways to answer those questions -- that don’t shut down a conversation or open it up to redundant, ill-fitting advice -- still take lots of practice, just like a workout routine.
High on my burden list would be all the small, insidious ways in which I extend myself to fit in or help others be more comfortable around someone who doesn’t look sick or in pain -- yet won’t get “back to normal” again.
Sometimes I say yes to invites so as not to disappoint someone close. I minimize the level or graphic description of pain that I’m in; contort my facial expression into a smile or semi-laugh to keep rapport; or attempt to eat something someone brought, even though it physically pains me to do those things.
Longing for Connections
You’re probably asking, “Why, Pat, do you do them if they can be a burden? “
It’s a fair question.
The short answer is because they relate to the blessing part of my burden. Living with invisible chronic pain is a great social isolator; one that prescriptions don’t treat.
To the contrary, human connection for me serves as a much needed lubricant that primes my psychological and emotional gears to work better. So I’m motivated to interact in spite of the price. And, realistically, when I can, I do. And when I can’t, I don’t.
In talking with my trigeminal neuralgia (TN) friends, we have remarked how it would be easier if our plight and handicaps were visible. Maybe then, we fantasize, the understanding and compassion that we seek and need would be more forthcoming.
We have also wondered if our experience of being misunderstood would be different if we had an illness or disease that had a medical label more widely recognized, publicized, or even scary.
We witness that even the terrifying descriptions used for TN, like “the worst pain known to medical practice” or “the suicide disease” seem to diminish in stature in comparison to those.
It’s maddening and confounding how something so torturous going on inside of us rarely registers to that extent in our external world.
Yet, at the same time, these longings of ours do contain the special favor of not attracting the kind of unfavorable attention that we don’t want. Those who don’t know us aren’t as likely to stare at us, give us those judgmental looks, or jump to conclusions about our health or wellness based solely on what they see.
So in that sense, I have come to view the invisibility of TN as a mixed blessing that protects me from those hurtful, unwarranted glances.
Having the luxury of being able to control how much information that I want to share about my particular affliction is another blessing I receive from the invisibility of it. That includes my personal struggles with the burden of it all.
That’s a freedom of choice that many with visible illnesses, handicaps, and disabilities have to a much lesser degree.
Thankfully, I am learning to accept the trade-offs involved with this odd paradoxical mix and view them as blessings in disguise. They are unseen and sincerely felt.
I offer a few of my answers, but in no way profess to have yours. Sometimes asking a question can serve as a catalyst to search beneath the surface of our particular medical labels.
One of my favorite professors always challenged his students to “mine for the gold.” Maybe this question will uncover some important nuggets for you.
We are still offered the potential to learn from each other and grow in different ways, despite our incapacities and similar challenges. That’s another blessing in my book.
Pat Akerberg lives in Florida. 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.