A Pained Life: Being Your Own Advocate

By Carol Levy, PNN Columnist

I was reading an article about a woman with cancer.  She tells how harrowing a journey it has been and all she has been through.

To help herself and her doctors, she carries to each appointment a thick medical file with all her information: doctors notes, tests results, surgeries, treatments, procedures, medications and the outcomes of them all.

“Doctors see this and they respect me,” she says. “I've learned that you have to be super organized. You have to be your own advocate.”

Good for her.

When I see a new doctor, I hand the nurse or doctor a two page printout that details my medical history. It includes all of the illnesses and procedures I have had that warrant noting (using their correct medical names), outcomes for the surgeries related to my trigeminal neuralgia, and all the medications I have tried.

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I am at a new doctors' office. The nurse comes out to greet me and I hand her my printout. She takes a quick look. “Who wrote this for you?” she asks.

“I did.” Who else would have written it?

She gives me a look that says, “Yeah sure.”

I recently saw a new pain specialist. He is a psychiatrist by training, but mainly sees patients to treat their pain, not as a therapist.

During our conversation I remark, “I think the pain is oculomotor,” referring to the third cranial nerve. I never think twice about using correct medical and anatomical terms when talking with a medical person. It gives us a common language.

And yet many doctors don't seem to like it. They ask, almost confrontationally: “Why do you talk like that?”

The psychiatrist’s training (I assume) made him more circumspect. “What is your background?” he asked. “You are very familiar with medical terminology and use it easily.”

He was the first doctor to ever ask it in that manner, the only one to ask anything about my background.

Had they asked, as he did, they would have learned I worked in hospitals for years as a candy striper and ER ward clerk. In those days I had pretensions towards medical school. The hospital where I worked was a teaching hospital and many of the residents loved to teach me, even allowing me to observe surgery. It would have been hard not to pick up the lingo.

So what is the difference? Why do doctors and nurses warmly welcome the information the cancer patient tenders via her thick file, while I am looked at askance?

And it is not just me. Time and again I hear from other pain patients or read in online support groups that a doctor or nurse wanted to know why a patient knew so much about their disorder and why they can speak intelligently about it.

I know why.  I think most of us do.  Because we are not children. We want to be seen and heard, to be partners in our medical care. We need to help the medical community understand: Ignorance is not bliss. And knowledge doesn't make us suspect.

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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 is the moderator of the Facebook support group “Women in Pain Awareness.” Her blog “The Pained Life” can be found here.

The information in this column should not be considered as professional medical advice, diagnosis or treatment. It is for informational purposes only and represent the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of Pain News Network.