It is so frustrating when a doctor says, “Try this.”
You try it and it doesn’t help. You return for a follow up appointment.
“Well, Okay. That didn’t work. Let’s try this instead,” the doctor says.
You take the new drug or attempt the new therapy. No benefit. You go back. Each time it feels like the same appointment: Let’s try something else.
It’s annoying. It’s angering. Can’t he figure it out? Why can’t he give me what I need to make the pain better? What help is it to keep trying something else? Why doesn’t he have the answer?
I never feel good about this scattershot approach. How hard can it be, I have often thought, for a doctor to have the answer?
And then Thomas Edison put it into perspective for me.
“Results! Why, man, I have gotten a lot of results. I know several thousand things that won’t work,” Edison said.
So too do many of us, and many of our doctors.
The lists of drugs alone that we have tried and discarded can be enormous. I would guess over the 30+ years I have had my pain that I have tried over a hundred different medications. Even when a few helped, over time I’ve had to stop taking them because of the dangerous side effects I experienced.
It is so very hard to live with pain. The lack of progress and benefit from different treatment approaches only adds to the pain — physically and emotionally.
I remember reading a note one of my first doctors had written: “She is being victimized by her pain.”
I did not understand what he meant at the time. Now I get it. I feel a victim, not only of the pain, but of the lack of treatment options for it.
I looked up the definition of victim online: “A person or thing that suffers harm, death, etc… from some adverse act, circumstance, etc.”
This added disclaimer surprised me:
“Using the word victim or victims in relation to chronic illness or disability is often considered demeaning and disempowering. Alternative phrases such as who experiences, who has been diagnosed with, or simply with and then the name of the disability or illness, can be used instead.”
But we are victims. Of pain that often controls our lives. Of a War on Drugs that we need to help us live. Without those drugs the pain can be so overwhelming that death can be seen as preferable, and for way too many of us, has been.
Changing the way we say it, “I am not a victim of my pain, I experience chronic pain,” does not change the experience of being victimized.
So maybe it is time to turn the equation around.
If we can look at each failure as bringing us closer to being helped, then we are no longer victims. We become warriors. And each new treatment brings us closer to the one where we just may prevail.
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 represents 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.