My Story: Stop The Stereotyping About Chronic Pain

By Cynthia Toussaint

Cynthia Toussaint

Cynthia Toussaint

Editor’s Note- Cynthia Toussaint is a frequent contributor to the National Pain Report. She founded the non-profit For Grace which is devoted to raising awareness for women in pain. She recently wrote a column for Maria Shriver’s website about the controversy that developed following a commercial that ran during the Super Bowl for opioid induced constipation.

As a woman who’s lived with high-impact chronic pain for over 30 years and an advocate for women in pain, I’m often dismissed by people close to me and the general public. But I never imagined that many of our country’s leaders would reject us.

When my nonprofit was invited to partner on a Super Bowl commercial this year, I was elated that chronic pain, a woefully misunderstood disease, would hit 115 million sets of eyeballs. While the ad specifically addressed a troubling pain medication side-effect, opioid-induced constipation (OIC), this was the ideal platform to give voice to the millions of people in the US who are surviving life-altering pain.

There’s much that’s important to know about this kind of survival. I have Complex Regional Pain Syndrome, also known as “The Suicide Disease.” For most people with severe chronic pain, the challenges are overwhelming. I was told by my physicians for the first 13 years that my problems were all in my head. I was bedridden for a decade unable to speak for five of those years, as the CRPS ravaged my entire body, eventually eliminating any chance for a cure.

As my losses and suffering piled up, I was abandoned by nearly all of my family members and pre-illness friends. I had to forego marrying my 35-year saint-of-a-partner John as that would have ended my healthcare benefits due to Social Security’s marriage penalty law. John and I lost our chance to have a baby. I lost my career as a ballerina, singer and actor. I now rely on a wheelchair for mobility. I live every moment of every day with pain and fatigue.

I can say without any hesitation that I would not be alive today if not for opioids. They have, in part, lessened my pain to a level I can more easily manage. Though luckily due to my partial CRPS remission, these days I only have to take them for “break-through” pain. This blessing contrasts sharply with the millions who must use a significantly greater volume of opioids than I do.

Despite this reality, a dark storm’s been gathering about opioid abuse. The sexy headlines talk only about non-chronic pain people who become addicted and are often lead to heroin use and ultimately die from an overdose. There’s no denying that opioid use can be tragic, but it’s equally tragic when the opioid battle-cry overlooks the life-saving needs of chronic pain patients.

While I was aware that our Super Bowl ad might cause some blow-back, I was stunned to read the cruel, mocking tweets from people who carry much weight in our country.

I have to believe these insensitive remarks come from a place of ignorance. If any of these gentlemen knew and stayed by the side of a loved one with high-impact pain, their remarks would have included compassionate, supportive words for those who require opioids in order to function.

Moving forward with opioids, we must hear deeply the voice of the pain patient. Bill Maher, I’d adore an opportunity to discuss this issue on your show. Governor Shumlin, I’d love to be a panelist at a Vermont town hall that discusses opioids. Mr. McDonough, I’d welcome an invitation to the White House to educate your boss about the plight of people with pain.

The good news is that media is talking more than ever about chronic pain. Doctors are far more aware of our suffering – and we get referred to pain management specialists more quickly than ever.

Most importantly, pain research is at an all-time high. In fact I was recently the first person with pain to speak at the National Institutes of Health. There, I and my story were welcomed with open arms by these world renowned scientists – and I was blown away by emerging therapies that will make opioid use obsolete.

In the meantime, we must open our hearts and minds and become educated about pain as the serious health crisis it is. We must find the humanity to offer those suffering every opportunity to survive and thrive.

For starters, there’s the 2010 Affordable Care Act which mandated the Institute of Medicine to draft a comprehensive report on the state of pain in America. They reported there are 100 million people who suffer persistent pain in the US at a cost of $600+ million annually in lost productivity. The vast majority of opioid prescriptions are written responsibly by physicians.

People with pain who take opioids daily are dependent on them to sustain quality of life. Dependence is different from the psychological craving of addiction.
Pain patients don’t want to take opioids any more than cancer patients want to use chemotherapy. However, many people with pain need opioids to function physically and pursue the joyful aspects of life.

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