The Pain Community Needs More Unity and Awareness

By Carol Levy, PNN Columnist

My column last month, “It’s Time for People in Pain to Be Heard,” received a lot of comments on PNN and in social media.

Most often the writer wrote about why or how they had been hurt by the implementation of the CDC opioid guideline. Several people commented that it’s not because they're too busy to become involved, they’re just in too much pain to advocate for themselves.

One poster told the story of a recent pain rally held at their state capitol. It was a real-life case of what if you threw a rally and no one came? Only one person showed up, defeating the point of the rally. The writer did not mention how many had said they would be there, but I imagine the number had to be more than one.

Yes, the pain stops us from doing many things. Yes, our complaints about how the battle against opioid prescriptions has made us the bad guys, has scarred us, and made our lives so much harder are true. But saying it only on PNN, Twitter, Facebook and other social media sites does not help the cause.

It helps us and only us, by giving us an outlet to express our anger and frustration about how our minds and bodies are affected when our medications have been reduced or stopped. The problem is that by speaking out only among ourselves, the rest of the world hears silence.

When we say the pain is what keeps us from going out and protesting, maybe we need to look at the many walks against cancer, Alzheimer's, multiple sclerosis and other diseases. Many of the people involved in those walks are not the patients themselves, who often cannot participate because of their illness. It is their family, friends and colleagues.

What if we worked to marshal our families, our friends and our colleagues to march for us?

Most people do not understand what chronic pain is or that it comes in many different forms. They are not educated about Complex Regional Pain Syndrome (CRPS), trigeminal neuralgia and other cranial neuropathies, Ehlers Danlos, and many other diseases and disorders that have essentially claimed our lives.

We have many “Awareness” days. For example, the first Monday of November each year is CRPS Awareness Day; October 7 is Trigeminal Neuralgia Awareness Day; and May is Ehlers Danlos Awareness Month. We who have the disorders may be aware of these days, but how many people in the general population don't know the day or month exists, much less what the disorder is?

To many people, “chronic pain” is merely pain that lasts a long time. CRPS or trigeminal neuralgia are chronic, progressive and often incurable, but to those who are not educated about them, they’re more like a stubborn toothache or ankle sprain that won’t go away.

What if on awareness days we inundate Congress, the news media and social media with letters, emails and tweets? What if we acted as a true group, not individual voices in the wilderness, but as a harrowing cry? Maybe then our voices would finally be heard.

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.