As a child after I was punished my father would say, “I don’t care how you feel, I want to see a smile.”
It was a lesson I took to heart. In fact, the worse I feel the more I tend to smile.
It was not a surprise when one doctor said to me, “You’re smiling, so you can’t be in the amount of pain you say you are.”
Oh yes I could. But the smile belied my words.
My family abandoned me years before the pain started. Not being able to work kept me from making friends. Most of the ones I did have fell by the wayside as the pain took over. Others moved. It has been just me for many years.
Living life alone is hard enough, but it is even harder when I am in the hospital.
To compensate, I tend to walk up and down the hall, stopping and schmoozing not only with other wandering patients but also with the staff.
A nurse stopped me one afternoon.
“You’re here because of your pain but you don’t act like you’re in pain,” she said.
“Do you notice that I spend most of the time in my room?” I asked.
“That’s because I like to have my pain in private.”
Doctors, and others, often base their belief on how we present ourselves. They rarely ask, “Why are you smiling?” Or say “You don’t look like you’re in pain.”
One of the best suggestions from other pain patients is to make sure you keep a diary or journal of your pain to give to your doctor; when it happens, how often, how it feels, and so on.
There is another item I think should be added to the list: “If need be, remember to explain why I look the way I do.”
This is especially true for women, but men are not immune.
You come in to the examining room and look good, your hair is washed and styled, your clothes ironed and neat, and there’s a smile on your face. Your nonverbal message reads: I feel good. Life is fine.
Regardless of how you actually feel.
The opposite presentation; hair somewhat dirty, clothes wrinkled, a little stain, not quite tucked in, tends to send the message: I feel awful and I can’t.
The question isn’t asked, “Why do you look disheveled today?”
Instead it is often interpreted as depression rather than pain.
It is ironic. In my case, the more eye pain I have the better and more open my eye looks. When someone tells me how good I look and how glad they are my eye and pain are better, it is hard to keep the smile fastened on my face. The one that is there because I don’t feel good.
The thing is, how is anyone supposed to know how we are doing and how we are feeling, unless we tell them?
If we want to be believed and to be taken seriously, we have to look at how we present ourselves.
And then we may have to speak up and say, “Please ignore how I look. Ask me how I feel instead.”
And then really hear what we have to say.
Carol Jay Levy has lived with trigeminal neuralgia, a chronic facial pain disorder, for over 30 years. She is the author of “A Pained Life, A Chronic Pain Journey.” Carol was accredited to the United Nations Convention on the Rights of Persons with Disabilities, where she helped get chronic pain recognized as a disease.
The information in this column is not intended to be considered as professional medical advice, diagnosis or treatment. Only your doctor can do that! It is for informational purposes only and represent the author’s personal experiences and opinions alone. It does not inherently or expressly reflect the views, opinions and/or positions of National Pain Report or Microcast Media.