I was watching Good Morning America the other day. One of the reporters was talking about having a mammogram as part of the show’s Breast Cancer Awareness Campaign.
Amy Robach was reluctant to have the test and be a part of the story because, as she put it, “I have no connection to it (breast cancer).”
Unfortunately, the mammogram was a blessing. Robach found out she has breast cancer. And sadly, she now has a connection to it.
Her explanation of why she did not want to have the test rang a bell with me. Most people, unless it is a friend or family member, have no connection to chronic pain.
I go to the cancer analogy a lot, because it is the disease with which most of us have a connection, whether it is personal or just through the media and the intense coverage of it. It’s a disease that most acknowledge and fear. It could happen to anyone, including ourselves.
Trigeminal neuralgia, chronic regional pain syndrome (CRPS), multiple sclerosis and other pain disorders? We are at the other end of the spectrum. Most people consider chronic pain as foreign. It is something that will never happen to them.
Trigeminal neuralgia and CRSP are starting to get media coverage. It is spotty but at least, finally, some attention is being paid.
Virginia, a member of an online trigeminal neuralgia support site, is being profiled for a segment on trigeminal neuralgia for her local TV news.
The reporter asked her to be in her pajamas for the interview, as she often is because she is disabled and often housebound by the pain. She was also asked to let them tape her as she brushed her teeth. Just the touch of the brush against her teeth and mouth is so painful it brings Virginia to tears.
The microphone failed during the first take. She was asked to do it again despite her level of pain and tears.
It makes sense on one level that the audience would need to see the effect of touch to the affected area. For the reporter to say, “Virginia’s pain is so bad just brushing her teeth can bring her to tears” without a visual cue has less of an impact. Seeing it in action is much more effective.
But we don’t ask someone with cancer to “show us the tumor” or “let us tape you as you get sick from the chemo.” They do not have to prove they have cancer or get sick from chemotherapy.
It is terrific that more people are learning about chronic pain and the effect on our lives. Showing the horror of the pain, as Virginia demonstrated, is not so great.
I remember when they used trigeminal neuralgia as part of the plot on a TV show many years ago. The actress screamed every time she got the pain. I could not believe such a pain existed. Until I got it.
Will showing the horror give viewers a connection to the pain or will it make it seem even more remote?
I can only keep my fingers crossed they will feel the terror of it as real. And the reality will lead to more acceptance, empathy and compassion.
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.