A Pained Life: Making the Pain Real

A Pained Life: Making the Pain Real

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.

TearI 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 Levy

Carol Levy

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.

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

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.

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Authored by: Carol Levy, Columnist

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dave

I agree with Cozette- its ashame that media attention is needed for pain. And i believe doctors are largely to blame for this because for years medicine has been prejudiced toward people in pain- and still is. In another blog a so called pain specialist argued with me that since i had no educating as a doctor that i wasn’t entitled to an opinion about pain care- and so we see even the pain specialists ears are dull of hearing when it comes to pain. It is up to people in pain and those who care about them to speak up to transform the health care industry to be more humane toward people in pain.

Cozette

Is is unfortunate that people have to put their private lives on line [public display] to prove they are in excruciating pain. Until some famous person, politician or the like has some disorder that renders them with chronic pain that evokes tears and lives of loneliness will others become sensitized to the fact that PAIN is real and EXISTS on a level that medication is often not very helpful. How much longer will chronic pain sufferers have to display their private lives to drive the point home, CHRONIC PAIN HURTS, NEED SUPPORT FROM SIGNIFICANT OTHERS AND REQUIRES A LOT OF UNDERSTANDING.

Nancy

What a insightful way to explain how we don’t understand the things that we have no experience or knowledge of. Most of us have known someone with cancer either a family member, friend or through documentaries like Farrah the actress did or many others you have seen. I worked in healthcare and always saw myself as part of the healing and fixing of people who were ill. Then I became the patient and I have to be honest I use to believe that people with chronic pain were using it as an excuse to not work or to be lazy. I feel terrible admitting this on social media and I do not mean to offend anyone, but I had no understanding. When I was pregnant I watched movies on people having babies and of course everyone told me their stories. This was before the days of epidurals but I still thought it couldn’t be that bad or we would not have so many children in the world. Well I was in for a shock, it did hurt but as soon as they put my daughter in my arms I soon forgot about the pain. Well the pain never quits, yes the medicine helps somewhat and I am grateful that I have it available. But everyday I am woken by horrific pain and I just think another day of trying to survive and still do some good in life while everything I do hurts. I see the looks of my family as they roll their eyes, thinking I don’t notice. I know they don’t understand and I would never wish this on anyone. But somehow we need to get the message out that it is real. It changes people’s lives, they lose their jobs, friends, social lives. If it wasn’t for groups like this where I can share my frustrations I am not sure I could go on. I know that you all understand, my doctor has a monthly support group that he allows me to help him by sending emails and making flyers. It makes me feel like I am still valuable. I watch Dr. Oz and The Doctors and little is said about chronic pain however, much is said about the terrible effects of pain medications and how it is destroying and killing so many people. Doctor’s know so little of chronic pain and how it takes away people’s lives. So we just need to keep educating people and hopeful it will be known just like cancer and other diseases. Thank you Carol for your work on bringing the truth to people. Your book was one of the first I bought when I became sick and it helped me so much as I knew I wasn’t alone and it wasn’t all in my head. I think we all are strong warriors fighting pain everyday. Bless you all!