A Painful Privilege: Your Right to Protest

By Mia Maysack, PNN Columnist

I used to think I maintained a pretty solid grasp on the concept of being hurt. But being confronted by prejudice and oppression has broadened my horizons regarding what else pain can and really does mean.  

Recently PNN published a column by Dr. Lynn Webster that highlighted an interesting point regarding pain sufferers and our experiences with prejudice in the healthcare system. Not that the Black Lives Matter movement is about us, but there is much we can learn from it. For example, how protesting in numbers gets the sort of attention that could actually drive real change.  

The fact is pain patients are often mistreated, but the discrimination minority patients face is deeper and far greater.  This isn't intended to lessen or take away from anyone's experience, but to keep things in proper perspective -- which we’re in need of now more than ever.

After attending a Headache on the Hill lobbying event in early February, I self-quarantined for months due to my health and in consideration for the health of others. But when George Floyd died, it was a last straw that drove me out despite the potential for consequences.  

It's understandable that not everyone is able to venture out in the ways that I have, and I'm grateful to have done this work to the extent that my ailments allow. But a simple fact remains at the bottom of any civil rights moverment:  there is always something that can be done. It is simply a matter of following through on doing it.  

Traveling to a place like Washington D.C. to lobby for better migraine care or even just to the state capitol in my own city for a BLM protest takes just about everything I've got out of me. I held my fists up for so long, I still cannot lift my arms. But the work has to be done by somebody.

So instead of complaining and contributing to the very stigma we attempt to escape, why don’t we show up and support each other in ways that we can?  

Being immunocompromised was mentioned at a recent protest I attended. Someone stood up to speak on behalf of another person who couldn't be there. I respected that. It was a way for that person's voice to still be heard regardless of the fact they weren't there to speak. It was a beautiful example of how we're still able to contribute meaningfully despite our limitations. 

The same is true for any cause. There are always options, such as donating to those you can trust your dollars with, contacting your elected representatives, making a call, sending a letter or signing a petition. At the very least, aim to recognize and release any privilege or ego.   

You don't need to have a different shade of skin to ask for justice.  At a recent protest, a black woman spoke so much wisdom. One of the things she said was, “Women are the most oppressed among us all.”

We need to recognize that when any of us is held back or down in any way, it impacts us all. When someone's life or rights are threatened, it's only a matter of time before the same thing could be done to you or someone you care about.  

Mia Maysack lives with chronic migraine, cluster headache and fibromyalgia. Mia is the founder of Keepin’ Our Heads Up, a Facebook advocacy and support group, and Peace & Love, a wellness and life coaching practice for the chronically ill.

Pain, Protests and Prejudice

By Dr. Lynn Webster, PNN Columnist

The Salt Lake Tribune recently published a story that distressed me. It said that Scott Senjo, a criminal justice associate professor at Weber State University in Utah, tweeted threats at people who were peacefully protesting the alleged murder of George Floyd.

Senjo’s incendiary comments are hard to accept, particularly in light of the criminal charges filed against the four Minneapolis police officers involved in Floyd’s death. The peaceful protestors that he threatened in his tweets were innocent of any crime.

Senjo was placed on probation and then resigned. He has since apologized for his tweets. But apologies don't correct the harm he intended.

People in pain can probably relate very personally to current events. They have been protesting online and in peaceful demonstrations for years about poor treatment and restricted access to pain medication, but their voices haven't been heard. Their suffering hasn't been sufficiently acknowledged or addressed. Their frustration and anger are similar in many ways to the feelings of those who are protesting George Floyd's death.  

Our First Amendment Right to Protest

Amazingly, peaceful protests can trigger anger in some people. Like Senjo, they are sometimes willing to suggest harming or even killing protestors.

It is even worse when political leaders specifically suggest using military force to "dominate" protestors. These perverted, authoritarian attitudes are attempts to deny Americans their First Amendment right to peacefully "assemble, and to petition the government for a redress of grievances."

George Floyd's death from asphyxiation by police officers lit a match to a tinder box of anger and frustration built up over centuries. The outrage has become national, and even international, in scope.

At the outset, the protests focused on anger about the injustice and police brutality levied against people of color. As the peaceful protests intensified, however, the actions became diffused by people who were committing acts of violence and unlawfulness. Some engaged in looting, arson and other crimes. These destructive actions nearly drowned out the voices of peaceful protesters who were trying to be heard.

Even Nonviolent Protestors May Be Demonized

Critics such as Scott Senjo may draw no distinction between the two groups, and may simply think of all protestors as criminals, radicals and revolutionaries. For some, it may not matter whether protests are peaceful or not -- anyone who opposes authority, in their opinion, should be met with a heavy-handed response.

You may remember the story of Francine Hughes, who stood trial for murdering her husband as he slept. The book and movie based on her experiences are called The Burning Bed. Hughes suffered years of domestic abuse, and the police refused to help her. Finally, she felt her survival depended on ending her abuser's life. Her violent protest of the brutality she suffered was wrong, but it was understandable. Outrage at oppression and the will to survive can elicit primal behaviors.

Today’s protestors are reacting to oppression, injustice, violence and racism that have never been adequately addressed. We, as a society, have continued to tolerate a criminal justice system that subjugates those who often lack the resources to defend themselves. It is easy to point fingers at abusive members of law enforcement without questioning how we, ourselves, contribute to the situation with our own behaviors.

It is a fallacy to think that even peaceful protests by people of color are accepted. Former NFL quarterback Colin Kaepernick kneeled during the national anthem in 2016 to protest police violence and social injustice. President Trump deemed his action to be disrespectful to our flag and heritage, and suggested that the NFL fire anyone who kneels during the national anthem.

Many Americans applauded President Trump's remarks. Indeed, Kaepernick apparently was blackballed from the NFL after his peaceful protest, and his football career effectively ended.

Peaceful protests of police brutality are, metaphorically, another form of kneeling during the national anthem. It is not disrespectful to kneel in protest, and it is not wrong to ask that those in power treat all people with dignity and respect. On the contrary: peaceful protesting shows respect for our flag and our First Amendment rights.

An Example of How We Can Heal

I want to close by sharing an example of the Randolph, Massachusetts Police Department. The photo below was taken a few minutes after a planned protest was scheduled to begin.

The protest in Randolph that day was peaceful. Perhaps that is at least partly because of how members of the police force greeted the protestors.

The Randolph Police Department evidently trusted that anyone who participated in a protest would do so in a spirit of peace and respect, and they felt a responsibility to respond in kind. They also wanted to demonstrate their solidarity with a statement made by Randolph Chief of Police William Pace:

“The Randolph Police Department will always be committed to providing the best possible service to the community in a dignified and equitable fashion. Officers are trained to approach every situation with respect, compassion and fairness, and these are all traits that were not present in the treatment of George Floyd.”

Thank you, Chief Pace, and your police force, for your service and your compassion. This is where our country's healing begins.

Lynn R. Webster, MD, is a vice president of scientific affairs for PRA Health Sciences and consults with the pharmaceutical industry. He is author of the award-winning book, “The Painful Truth,” and co-producer of the documentary, “It Hurts Until You Die.” You can find Lynn on Twitter: @LynnRWebsterMD

‘Don’t Punish Pain’ Rallies Draw Local Media Coverage

By Pat Anson, PNN Editor

Hundreds of people – including some in wheelchairs and others on crutches – took part in a nationwide series of rallies Tuesday protesting the poor treatment of chronic pain patients.

“Don’t Punish Pain” rallies were held in over 80 cities from Anchorage, Alaska to Jacksonville, Florida. The protests were organized on Facebook by a grassroots group of pain patients, including many who have lost access to opioid medication or seen their doses drastically reduced due to federal and state guidelines that target opioid prescribing.   

Rally organizers were disappointed by the low turnout in some cities. Only a handful of people showed up for rallies in Las Vegas and Providence, Rhode Island. But over a hundred patients and their supporters rallied in Oklahoma City. And about two dozen people rallied on the steps of the state capitol in Olympia, Washington.

Due to their small size, the rallies have yet to attract the national media attention that organizers are hoping for.

But they have been successful in drawing local media coverage and getting reporters to tell a side of the “opioid crisis” that’s rarely addressed.

DON’T PUNISH PAIN RALLY IN OLYMPIA, WASHINGTON

“We’re invisible. We’re hidden in our homes and our beds and in our rooms,” Crystal Irwin told CBS4 News at a rally in Denver. “People don’t know what we’re going through.”

Ben Lawrence has lived with chronic pain since an accident in 2009. He told CBS4 he was still able to work until his doctors stopped giving him opioids.

“They make you feel like you’re a drug addict,” Lawrence said. “They don’t give me the medication I need to go to work. I want to go to work.”

Rally organizers in Stuart, Florida told ABC25 News that patients are being unfairly targeted in the opioid crisis when the real problem is illicit drugs.

"They are calling this an opioid crisis when actually it's a fentanyl crisis, and they can't control the drugs coming into the United States. But they can control people like us who get our pain medication to survive," said Michael Courtright.

Patients are calling for major changes in guidelines released by the CDC in 2016, which discourage doctors from prescribing opioids for chronic pain. Although voluntary and only intended for primary care physicians, the guidelines have been widely adopted as mandatory by insurers, regulators and healthcare providers.

“Chronic pain patients all across the country are losing access to their pain medications that they depended on sometimes for 20 or 30 years,” Kristen Blanton told Fox55 News in Urbana, Illinois.

Don’t Punish Pain organizers held their first nationwide rallies in April and are planning another series of protests in January.

‘Don’t Punish Pain’ Rallies Set for Saturday

By Pat Anson, Editor

Dozens of protests are being planned across the United States this Saturday to draw attention to the plight of patients suffering from chronic pain and illness.

The “Don’t Punish Pain” rallies were organized by a grassroots group on Facebook and quickly gained traction in the pain community – where there is growing frustration over reduced access to pain medication and medical care.

“One day we were talking and decided we could have a rally. And it went from there. It just exploded,” says David Israel, a 30-year old Michigan man disabled by chronic pain.

Israel says the group is planning rallies in 47 states – mostly at state capitols – and has obtained the necessary permits. For a complete list of the times and locations, click here.

The primary goal of the rallies is to get the Centers for Disease Control and Prevention to change its opioid prescribing guidelines, which have caused many doctors to stop treating patients with opioid medication or to drastically lower their doses.

“There are millions of people that are being affected by this. Not only do we need to get the CDC to change but we also need to get help for the people who’ve been abandoned,” says Israel.

Israel was recently abandoned by his doctor and has been unable to find a new one, in part because of a disputed drug test. He suffers from hydrocephalus, a condition that causes spinal fluid to build up in his brain, leading to headaches and other neurological problems.

“I don’t have a doctor at all right now,” said Israel. “I need pain meds, but I don’t have any because there was a false positive last year that I proved was false, but the doctor said there was no such thing as a false positive. She dropped my pain meds overnight.”

Some patients have complained to PNN that the rallies are poorly organized and they don't know who to contact or where to get further information. Perhaps the best thing to do is to join their Facebook group by clicking here and see if the information has already been posted.

The Don’t Punish Pain rallies were organized in the last few months without support or funding from other patient advocacy groups. It truly is a grassroots effort, supported by volunteers like Rhonda Posey, a Texas grandmother who suffers from arachnoiditis, a chronic spinal condition.

“It’s been fun to be involved with it, but it’s been quite a job,” says Posey, who helped organize the Don’t Punish Pain rally at Dallas City Hall Saturday morning. She was unable to get a permit at the state capitol in Austin, possibly due to the stigma associated with opioids.

“We had to have legislator sponsorship (for a permit). And we reached out to probably a dozen people trying to get someone to sponsor us and nobody would do it,” she told PNN. “They probably didn’t want their name associated with something like that.  

“Dallas has been very nice. Someone will be there with us the entire time. They’ve been real nice about everything, so it’s worked out well.”

Posey has also been successful in getting some advance media coverage of the rally from local newspapers and from KTRE-TV.  Her group plans to bring 50 pairs of shoes to the rally to represent patients who have died from suicide or medical conditions caused by untreated pain. 

She and Israel say it is time for different tactics by the pain community. Just signing petitions and writing letters to politicians about how the government’s response to the opioid crisis is hurting patients hasn't been effective.

“Nobody’s got the guts to standup and say wait a minute, there are other people suffering. It’s not just people that are suffering form addiction. It’s not just the families who are suffering from people who have died from overdoses," Posey said. “What about me? What about the millions of chronic pain patients that are suffering? What about us?”

A Pained Life: An Activism Primer

By Carol Levy, Columnist

Those of us who write columns and articles, or comment and tweet about chronic pain, beat the same drum, repeatedly: The world needs to hear us. We have to make our voices heard.

Unfortunately, the most common response seems to be along the lines of “We can't.”

The reasons make sense. Pain and disability keep many of us from being able to go to a rally, representative's office or a town hall meeting. Others say “I want to make my voice heard but I don't know how.”

I'm going to take my space today to give some ideas on how.

The latest outrage is Attorney General Jeff Sessions telling the country people in pain should just “tough it out.”

Because of my eye pain, I cannot write a long letter to him. He is not someone you can access merely by going to his office. Or find him on Twitter or Facebook.

You can, however, tweet to him at the Justice Department: @TheJusticeDept or leave a comment on their Facebook page: www.facebook.com/DOJ/

I sent a tweet. I included a video about my fight and struggle to live with trigeminal neuralgia: what it is, what it has done to my life and what it has taken from me.

Do you have the ability to make a short video explaining your pain disorder and what it has done to your life?

If you have been hurt by the CDC opioid guidelines, can you tell them how? You can you tweet, for example: “CRPS has taken my life from me. Opioids have helped me to get some of it back.”

You could also tweet: “Opioids helped my chronic back pain. I was able to work, play with my kids and have a better quality of life. The CDC guidelines caused my doctor to reduce/stop them and I can no longer do those things.”

You could also find a link on the internet that describes your pain disorder and post it to Facebook: “This is what rheumatoid arthritis is. This is how the pain impacts us.”

If possible, you could also go to town hall meetings, offices or rallies where your legislators will be. I recently went to a town hall meeting on the opioid epidemic. Included on the panel were my congressional representative and one of my county commissioners. We had to submit our questions on a card rather than just ask them.

This was the second town hall meeting where my question, “How can you keep chronic pain patients safe when we are being blamed and often hurt by the actions being taken?” went unanswered.

Undeterred, I made sure to get to the congressman and the commissioner before they left the room. I made sure to come prepared with information, such as studies showing how rarely we get addicted and how the number of suicides appears to be increasing as opioid medications are being reduced or stopped.  

Two years ago, I asked my congressman if he could introduce a resolution making October 7 Trigeminal Neuralgia Awareness Day. I was told the House was no longer permitting those kinds of resolutions. Instead of throwing up my hands and walking away, I asked again the following year. This time he was able to do it.

To my astonishment, when I spoke with him the second time he remembered not only that Trigeminal Neuralgia Awareness Day was in October but some of the specifics about the condition itself.

This may help him remember us -- all of us – the next time Congress debates  the opioid epidemic. Chronic pain is more personal to him because of his encounter with me.

If at first you don't succeed is a cliché for a reason. It is worth writing, calling, visiting and emailing. The worst they can do is ignore you or say “No.” But trying another time may just get them to say “Yes.”

The tortoise didn’t give up when it looked like the hare was winning. We cannot afford to give up either.

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.