Many years ago a neurosurgeon told me he was going to do a surgery similar to another one I already had, only in a different area of the brain. When I arrived at the hospital I found out he had misled me. He intended to do a cingulotomy, or mini-frontal lobotomy.
I refused, but he insisted I take the preparatory tests anyway, convinced he could convince me to have the procedure. They were IQ and psych tests, apparently to have as a comparison after the operation; to see what capacities and abilities I may have lost.
One of the tests was the MMPI, Minnesota Multiphasic Personality Inventory.
This is a test that some of you may have taken. It is comprised of 567 questions to be answered “Yes” or “No.”
I quickly found that my answers were bound to be misinterpreted:
Q: My daily life is full of things that keep me interested.
Answer: No. My life and what I can do are greatly constricted by the pain.
Q. I am about as able to work as I ever was.
Answer: No. I have been unable to work since the second the pain started.
Q. I find it hard to keep my mind on a task or job.
Answer: Yes. Because at times I am highly medicated and in horrendous pain.
Q. I am in just as good physical health as most of my friends.
Answer: No. I wish I was, but the pain has changed all that.
Q: I feel people are often staring at me.
Answer: Yes. Once my face was paralyzed, people looked and some asked, “Did you have a stroke?”
Q. I feel I look different than others.
Answer: Yes. My face is disfigured from the paralysis.
This is just a small sampling. The results when I answered truthfully showed hypochondria. Other questions showed me to have paranoia.
After I saw the results I decided to take the test again. This time I would be “deceptive” answering — as if I did not have pain, disability or disfigurement. Not surprisingly, the results showed me to be psychologically “healthier” then when I took it the first time.
We often talk about people refusing to believe in our pain. It is hard enough to have to deal with that fight.
But too often the presumptions about us bleed into the standardized testing, whether psychological or physical. Often our signs and symptoms do not mimic exactly the way the medical texts read when defining an illness or syndrome.
I completely fit the clinical text description for trigeminal neuralgia, except that I was “too young.” As a result, it took over a year before it was accepted that I did indeed have trigeminal neuralgia.
It is long past time for doctors who rely on the “normal presentations” in order to make a diagnosis to understand and accept that most of us do not fit into the standard boxes into which they try to force us.
How much easier that would make life for our doctors. And for us.
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.