How to Advocate With the News Media

By Barby Ingle, PNN Columnist 

So many in the chronic pain community wonder how to share their stories with the news media and connect with reporters. I have been doing that for years as a patient advocate, creating newsworthy content that helps educate the public about the issues we face.

The media are a powerful tool for advocacy because they can help you reach a larger audience and get your message out there. Networking with different media outlets has allowed me to spread my advocacy message further and make a real impact. I have built relationships with the media and gained access to publications I never had before. 

For example, I researched all of the major news outlets in Arizona, where I live, and learned who the producers, publishers and health writers are. I then connected and introduced myself to each of them.

Whenever I have a significant news item in the chronic pain or rare disease community that affects Arizonans, I reach out. Even when I do not have a specific story to pitch, I stay in touch. That helps to keep me in their minds. When they have a new story or need to verify something, they contact me for comment and to confirm the information. 

Media outlets can help you reach your target audience and spread the word about patient issues, products, services and disease-specific information. The more information we share effectively, the better access we’ll have to treatment. Media can be a friend or foe. We must learn to use them to get others involved.

We must also be mindful of our message and portrayal in the media, ensuring the information we provide is accurate and that the story is told to benefit our cause. We should also be prepared for any potential negative backlash from media campaigns. Choosing bipartisan, non-political topics, such as promoting individualized care and understanding how our medical system works can avoid this. 

We must also remain vigilant and aware of misinformation and bias in the media. It is essential to consider the impact of our message and how different communities may perceive it. 

Sharing Your Message

How can you share your message through the media to make a difference? Focus on issues that resonate with their audience and yours. Be bold in your advocacy approach. Feel free to challenge the status quo and use the media to highlight critical issues.

You can use a variety of mediums to reach your target audience. Be open to sharing on television, radio, newspapers, magazines, online, and in support groups. 

Communicate your message creatively to build interest in topics. You will need to offer something “new” to the media and be prepared to discuss your subject from multiple points of view, so that it connects with more people. Monitor the response to your message and adjust accordingly. Follow up and ensure the right message is heard.

Different people have different interests and perspectives. It's essential to tailor your message to specific groups of people so that they can understand and appreciate what you have to say. 

A 60-second message I could leave for a local news reporter might go something like this:

“Hello. I am Barby Ingle, a health advocate and chronic disease patient with multiple rare diseases. I live in Gold Canyon, AZ, and am excited to be working with my state senator on health bill SB1234.

I live with a rare pain condition called Reflex Sympathetic Dystrophy. It has affected every aspect of my life: financial, social, family and access to care. 2.9 million Arizonans live with a condition that involves pain; here in our district, approximately 150,000 are affected.

SB1234 is designed to help patients like me get better access to proper and timely care. I would love to set up a time to speak with you in detail or I can come in for an interview or live segment. I will email you a copy of the bill and supporting details. Please be on the watch for it in the next few minutes.

Feel free to call me back or email me to schedule a meeting. I look forward to hearing from you or one of your staff members soon. Thanks!” 

You should know the audience or readership of the media outlet you work with. That will help you understand what approach to take with your messaging and takeaways for that audience. It will make your pitch stronger, and give readers and viewers an opportunity to act on it. Be creative in your approach and use various media platforms. 

Additionally, by monitoring the response, you can identify which messages are resonating and which may need further adjustments. Following up with your audience shows that you care and are invested in the conversation.

Making or sharing a video, podcast or online post to explain your topic further is also possible. Don't just do the media as a one-and-done -- share it on social media to reach a wider audience.

To conclude, we must be willing to engage with the news media and the public to ensure our message is heard. The media can give the pain community the attention needed to spread a message of need.

Be it a lack of individualized care, a decision that negatively affects the pain community, or a desire for an amended state/federal law, our voices can be used to make change and make a difference in the lives of the patients. Ultimately, we are responsible for accurately communicating our message to the press and the public. 

Barby Ingle is a reality TV personality living with multiple rare and chronic diseases. She is a chronic pain educator, patient advocate, motivational speaker, and best-selling author on pain topics. You can follow Barby at www.barbyingle.com. 

Finding Hope in Possibilities

By Mia Maysack, PNN Columnist

My journey in advocacy began and revolved around healthcare reform. I’ve since stepped back from that pursuit, the main reason being that the medical-industrial complex isn’t the only system in need of dismantling. It didn’t make sense for me to focus solely on one aspect, but rather all of them, and the ways in which they are polluting the same corrupted river.

My efforts started out fixated on neurological disorders, because that’s what I’ve endured for most of my life. But I believe each diagnosis matters equally, and whether I’m able to personally relate to them has always been irrelevant to me. I still care about everybody’s dignity and I believe most patients appreciate my efforts.  

I’ve met some of my absolute favorite individuals through this work, but a large percentage remain stuck in their grief and mourning or wrapped up in their pain identity. I get that because I’ve been there.

Despite my patience and understanding, that’s often not what I receive in return.  I’m thankful for the inner work I’ve done, which provides strength for me to withstand those who so boldly mistreat me. I also understand that it is more about them and their inner climate than me. That doesn’t mean I am better than anyone, but that I operate from the bigger picture.

Despite having every reason a person could think of to give up, I have not. What I offer the pain community is a new way of thinking: hope in the possibility of brighter days ahead. 

I’ll never understand why some choose to remain miserable when they don’t have to. It doesn’t make sense to me how people can sit and complain about not being well enough to call a legislator or advocate for themselves, but devote so much energy and time into diminishing those of us who try to turn our misfortune into something that all are able to benefit from.

What hurts more than the attempted character assassination is the fact that we continue losing so many to suicide, not just in the pain community but the world around us. I reflect on how the cruelty I’ve endured could be the last thing someone encounters before they choose to just finally throw in the towel. It’s infuriating because it means we’re essentially playing a role in murder.

I am sorry if your life experiences have led you to feel as though the only thing you’re able to do is to attempt to hurt other people. I know that those frustrations are not to be taken personally, but stem from the doctors, trial and error treatments, and the broken society that has failed us. 

You should know that I’m strong enough to lovingly receive the hate, but not everybody else is. Please think twice next time you are compelled to try ripping someone else into shreds. Ask yourself, does it really make you feel any better?  

When I say “get well soon” -- as I did in my last column -- I wholeheartedly meant it.  I’m living proof that it’s possible, and no one gets to belittle or reduce that in any way. If and when you’re ready to come out of the darkness, I’ll still be here.

Mia Maysack lives with chronic migraine, cluster headache and fibromyalgia. She 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. 

A Get Well Message to the Pain Community

By Mia Maysack, PNN Columnist

One of the things that has distanced me from hands-on participation in the pain community is the persistent negativity. I’m not the only advocate that has picked up on this, nor alone in feeling the need to step away as a result.

Don’t get me wrong. As a former healthcare provider, I understand and am sensitive to the fact that people aren’t chipper on their hardest days or when they’re experiencing a tremendous amount of discomfort. And being a patient myself, there have been and will continue to be moments where I drop the ball in regards to being “positive.” My vision is literally and figuratively blurred on those days -- to the point where it’s not easy to see any bright side or silver lining.

But each attempt I make to provide meaningful commentary on what has assisted, changed or even saved my life is met with objections. One of the most infamous lines goes something like: “Some of us have incurable conditions!”

It’s as if my post bacterial-meningitis intractable mega-migraines, irreparable cellular nerve damage, evolving arthritis, immobilizing fibromyalgia, and the fact I’ve lived this way for two decades and counting doesn’t have any merit or meaning.

It’s quite frustrating to devote so much of your experience, skills and compassion to people who condemn you for attempting to transform your suffering – while they contribute to that very suffering. The whole “misery loves company” thing is a bit played out with me. I believe a much more productive use of energy is to get to the root of our misery, as opposed to clinging to it and passing it on.

Any time I offer up alternative pain modalities that have proven helpful for me, along with millions of others for thousands of years, while always treading lightly on the eggshells of disclaimers about everything not being for everyone, nothing can completely fix our problems, it’s a process of trial and error, etc. –  I’m torn down by the very same people.

How is this supposed to elevate anyone or make anything better?

I’ve been mocked, ridiculed, silenced and even threatened when mentioning things such as mindfulness, meditation and neuroplasticity. But companies have invested in and now offer all of those therapies.

This is in part what led me to step away from patient support groups, because most don’t desire actual support, but seek more space to complain. I wholeheartedly understand and believe it is of utmost importance for our grievances to somehow exist outside of ourselves, but I’ve found that support can only get us so far.  It then becomes more about self-help, which is something that most people have a difficult time realizing or pursuing, especially when illness or pain are major obstacles blocking the way.

Sometimes, those of us who have risen from the depths of our own versions of hell are judged and labeled by remarks that we couldn’t possibly be sick. That somehow, we’re more privileged than the next patient or had opportunities that others don’t have and cannot get.

In actuality,  we are revolutionaries who saw that treatments were not working and made a conscious decision to devote our lives to assisting others through their hardships. Not because anything is gained or money made, but because it is the right thing to do. We were once consumed by the fire as well, but now venture out with buckets of water for the rest of you.

It is mostly thankless, often torn down, and difficult to take on the weight of what can feel like hatred, all the while attempting to balance and manage the ailments that already threaten us. Irony is found in the fact that so much of the condemning originates from people who do the absolute least for this community. 

The time has come to understand this conduct as a sickness in itself, and that it causes a negative ripple effect that limits us all from the ability to move forward.

I’m thrilled to see articles about things such as how healing is just as important as pain relief, or how childhood experiences that seem to have little to do with our current conditions can still directly impact how our bodies and minds feel.  And it’s always encouraging to come across a list of low-to-no side effect modalities to at least consider, if not try.

This doesn’t mean belittling anybody's experience. Release the illusion of stories you’ve always told to yourself or were told to you. Make room for a new chapter and fight for your lives, not against those who want you to thrive. And get well soon.

Mia Maysack lives with chronic migraine, cluster headache and fibromyalgia. She 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. 

A Voice They Don’t Want to Hear

By Carol Levy, PNN Columnist

“Nothing about us without us.”

I did not know this clarion call was initially a slogan of the disabled community, which wanted a seat at the table when policies were created affecting the disabled. It also pertains to the pain community and our place in the fight against the “war on opioids.”

I am a member of my county's opioid task force. I was invited by a commissioner, an anesthesiologist, who has chronic pain patients. The commission's goal is to find ways to prevent drug abuse, how to treat those who are addicted, and how to fight opioid addiction. 

We had our second meeting a few days ago. In this group, I have become the voice of the pain community, a voice they don't want to hear.

At the first meeting, after hearing about opioids from an emergency room doctor, an EMT, a sheriff, and a recovering addict MD, we broke into smaller groups of 5 or 6 people. I tried to make my voice heard.

“Please, when you speak of addiction starting with painkillers, it needs to be made clear that the people abusing opioids are not the same as those who get legitimate prescriptions for legitimate pain,” I said, adding that studies show we rarely get addicted.

But another woman had a louder voice. Her story was sad, an addicted son who died from an overdose. Every time I tried to speak, she spoke over me. As the meeting progressed, the rest of the group turned to her and very specifically away from me. I was ignored for the rest of the meeting.

At the end, when we were to present our feelings and thoughts about what was needed in the fight against addiction, my voice was absent. 

The second meeting was run the same way. When we broke into our groups, I immediately spoke up. Eyes turned towards me as if to listen, but as soon as I finished my few sentences they turned away. I tried a few times more, louder each time, but was still mostly ignored.  

At one point a woman who runs a recovery house spoke the sentence I abhor: "Many of the addicts start with painkillers...”  

I immediately responded: “There needs to be an asterisk anytime that sentence is spoken. Studies show chronic pain patients rarely get addicted.”  

“I was not referring to those who need them,” she replied. 

“Then you need to add that as a parenthetical, so we don't keep getting swept up as part of the culprits in the war,” I urged.   

She shook her head, said “yeah sure” and went back to "they start with painkillers,” completely ignoring what I had said. 

At the end of the meeting, when we were asked to put on a poster board what we felt needed to be addressed, the leader completely omitted any suggestion that it needs to be made clear the pain community is not part of the problem. 

When it was over, I sought out one of the organizers and told her, “I'm not sure there's a place for me, for the chronic pain community, at this table."

She said she would talk to the county commissioners who had formed the task force and get back to me. No one has. 

I don't know what else to do to get us included. “Nothing without us” in regards to the opioid task force seems to be “nothing about us.” And definitely without us.   

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.

Advocacy and Awareness Should Promote Healing, Not Division

By Mia Maysack, PNN Columnist

June is Migraine and Headache Awareness Month in the United States. This year’s theme is “Advocate for Access.” 

Although I understand the intent behind awareness months, to those of us who truly live with a non-stop condition, they can border on being a tad mundane. Especially when the execution of the awareness itself does very little to propel us forward in any meaningful way.

I live with deeply rooted and untreatable nerve damage from an incurable traumatic brain injury. Bacterial meningitis almost claimed my life as a child. My brain swelled up and still feels pained and swollen even now -- the very definition of intractable pain.  Because migraines are literally my each and every day reality, I'm sick and tired of focusing on or talking about them. 

From what I've witnessed, awareness campaigns are often a repetition of the same conversations, among the same people and within the same circles. We as "migraineurs" don't need to continuously hear about what we already know. In my opinion, it's an unnecessary use of precious energy and the impact doesn't go as far as it could. 

The "pain community" generally seems less of a community and more like a clique -- a repeated line up of only certain people’s voices being heard and a select few being invited to participate in events.  

It gets even worse than that:  I recall emerging onto the pain scene out of an absolute last resort. I jumped head first into involvement with every organization I could find and joined several support groups out of sheer desperation. One day, a routine migraine treatment with Botox went horribly awry -- to the point I still deal with the repercussions to this day. 

I immediately logged on to share this experience, not in an attempt to scare anyone but to raise awareness and hopefully assist in others not encountering the same thing I did. I hoped for some compassionate empathy but what I received was the exact opposite. 

I was torn to shreds online by keyboard warriors claiming not to feel well enough to physically function, but clearly energized to the point of dragging me down. Before I was given a chance to clarify or further explain, I was muted by administrators. This felt violent, uncalled for and oppressive. I was bullied and shunned at a point in time I couldn’t afford to be. 

These very same individuals have the audacity and nerve to schedule days of remembrance for those who could no longer accept or deal with their pain, while simultaneously playing an active role in pushing people over their edge, probably without even caring or realizing it. 

I view it as a sickness, that a person would demand and expect consideration and respect when they don't demonstrate or possess it for others. It's a contest of underlying comparison as well as competitive victimization: I've hurt longer than you, worse than you, my life has been harder than yours, and no one else's life is as bad as mine.  

Is that really a game you want to win? How could one ever expect to feel better with a fixation like that? 

I've come to realize that many who claim to want improvement aren't truly committed to it. It takes work, a retraining of our minds and an entirely new approach to not only how we care for ourselves, but how we care for others.  

This questionable code of conduct is an illness in itself. The resistance to actual improvement is in part what's keeping members of these groups sick -- not to mention the fact that some remain utterly attached to their conditions to the point they're unsure of any identity outside of them. If those they so faithfully follow were truly interested in the well-being of their devoted followers, they'd be attempting to shine a light on the darkness as opposed to benefiting or profiting from it. 

I remained quiet on this for a long time, but one thing about my advocacy is that it’s real. Some people love that and others hate it. I’m not afraid to burn bridges, especially the ones that I built. In case you haven’t noticed, the whole world is hurting and the healing of our planet is what matters. Not just you and your cause.   

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. 

Infighting in the Pain Community Made Me Leave Advocacy

(Editor’s note: The pain community lost another one of its advocates this week – not to chronic pain or illness, but to frustration and despair. In a Facebook post, Caylee Cresta said she would no longer be an advocate for people in pain because of chronic infighting and toxicity in the pain community.   

For those who don’t know Caylee, who we profiled in a 2018 PNN article, she is the creator of a series of videos on YouTube and TikTok that explore everything from makeup and relationships to the stigma faced by pain patients and their fear of pharmacists. Caylee’s entertaining videos offer a way for people outside the pain community to see how opioid hysteria has disrupted pain care for millions of patients. Her Facebook post is republished here with Caylee’s permission.) 

By Caylee Cresta 

For my fellow spoonies: I’m going to address this once, and once only. I hear you guys, I know you’re waiting for chronic pain content; but unfortunately, it’s not coming (at this time, at least).  

Rare disease, chronic pain, and the stigma surrounding opioid medications have plagued my life for over a decade at this point. I am not nearly alone in that, and hundreds of thousands of people are suffering daily. That cause is so close to my heart, and will forever be, and it is still something I deal with daily as well.  

When my life was turned upside down as a result of that stigma, I found a community advocating, fighting, and spreading awareness. I met some of my favorite people as a result and made what I believed at that time would be lifelong friends.  

However, that community is by far the most toxic I have ever seen in my life. There is a power struggle that will swallow any attempt at good, and an ugliness that will destroy progress. It will scare any true advocate enough to walk away. The lies I heard spread about myself, my character, and my family were enough to make me sick.

CAYLEE CRESTA

I want you to ask yourself, if someone is fighting for a cause they truly believe in, should they have to defend themselves more vehemently than the crisis at stake? The toxicity doesn’t allow anyone to focus solely on the action of advocacy, and you beat each other down more than any opposition ever could.  

I don’t expect a word of this to change anything, but I do feel as though I owe many of you an explanation for my absence. I can only hope that I will be able to create some change at some point on my own, but that is not a decision I will make today.  

I love creating more than anything in the world, and I let the toxicity of the chronic pain community rob me of that for years. The chronic pain community caused me more pain than the stigma I hoped to fight.  

I remember my first days in the chronic pain community clearly. I remember people saying that they never made any progress. While I hate to be blunt, I think the answer is abundantly clear.  

You will never have the numbers because you constantly let people be torn down and excommunicated. Your viscous behavior will take any passion for this cause and swallow it whole, all before spitting out the shell of someone who was once excited to advocate. You don’t see passion as inspiration, you see it as competition. 

I spent my own resources, offered my assistance to all, and spent hours in hopes of offering support and change, and instead I got hate. I see everyone post the suicide rate with grave concern, and yet you will encourage it with rumors, falsehood, and lies.  

The very people that once called asking for help became my enemy without a word, question, or otherwise. And while I could go on forever, I only ask this: If you see another passionate advocate excited to create change, protect them and don’t let them be destroyed as you did me.  

This isn’t about me, it’s about patients, but the chronic pain community seems too often be about anything but. 

If you take anything from this post, let it be this: you have to care more for this cause than you hate one another. And with this, I close that chapter of my life forever, and I wish you all continued love, happiness, and comfort.

Why the Pain Community Should Support Voting Rights Legislation

By Dr. Lynn Webster, PNN Columnist

I believe to my core that all people should be able to vote without experiencing intimidation or hardship. People who are in chronic pain -- many of whom require opioids to enjoy any quality of life -- live outside of society's safety net. They don't run for political office because they can't. They don't make the laws that oppress them. And now they're in danger of being unable to vote against those laws.

The House of Representatives recently passed H.R. 4, which is a revised version of the John Lewis Voting Rights Advancement Act. The bill is designed to restore provisions of the 1965 Voting Rights Act that were diminished by the U.S. Supreme Court in 2013 and further gutted last year. Essentially, the court’s 2013 ruling allowed some states to change their election laws without receiving federal approval. While H.R. 4 passed the House on a party line vote, it now faces opposition in the evenly divided Senate.

H.R. 1, the For the People Act 2021, is another voting rights bill that is being considered. It would ensure same-day voter registration and early voting throughout the country for national elections. This flexibility is precisely what many people in pain need. The law also attempts to correct the corrupt gerrymandering that contributes to the country’s hyper-partisan divide. This bill would also be important to support.

Voter Suppression Impacts the Most Vulnerable

On August 28, I marched in Salt Lake City in support of easier and more practical ways to vote and to protect the right of everyone to participate in our democratic process. When I attended this rally, I learned that voter suppression is a much broader problem than I had realized. It isn't only an issue involving people of color. Intentionally or not, voter suppression prevents many subsets of Americans from having a voice in our democracy.

Although the voting rights movement has been championed mostly by people of color, everyone should be involved. This affects all of us. It targets people who are poor and can’t afford to take a day off to vote, and those who can't leave their home because they can't pay for childcare, are caregivers for the elderly or sick, or are sick or disabled themselves. People with severe, disabling pain and those who provide care for them are affected by voter suppression laws as much as those of any other minority. 

During my walk from Utah’s state capital to Washington Park on that hot Saturday, I realized my 40-minute hike was nothing compared to the challenges that many had to endure during the last election, and may have to experience in future elections, including waiting for hours. I was sweating and thirsty. Fortunately, the organizers provided us with cold water. Others may not be so lucky.

In Georgia, restrictions have recently been passed to prevent voters standing in line from receiving water. The laws also limit absentee ballots and the number of ballot boxes, which makes it more difficult for caregivers, the disabled, and people with disabling pain to vote.  

As I marched, I began to wonder how people in pain would be able to tolerate standing in a long line. How could people who use a wheelchair or walker, or who suffer from chronic migraine headaches, fibromyalgia or severe arthritis, endure the wait? Even healthy senior citizens and others who must void their bladders frequently may be unable to stand in a long line to have their voice heard.

If one person’s rights are diminished, the rights of all people are diminished. These restrictive laws are unnecessary and it would be an injustice for us to allow their passage.

The Pain Community Needs a Voice

There are 20 million people in the U.S. with disabling pain. This represents more than 12 percent of the total number of people who voted in the last presidential election. That is more than three times the difference in votes between Biden and Trump. It is a consequential population.

Pain and addiction don’t preferentially affect Republicans, Democrats or Independents. They harm all people equally, and people with pain and addictions are not tied to any political tribe.

People in pain do not have a collective political voice. They have been marginalized and forced into the darkness. People with substance use disorders also have been silenced. Our drug laws are punitive and utterly disastrous. The only way to change this is by voting for those who will represent our interests.

Therefore, it's important for the pain and addiction communities, regardless of their political allegiances, to support the John Lewis Voting Rights Act. The law would help restore the rights granted under the Voting Rights Act of 1965 and empower the federal government to enforce those rights.

What We Can Do

I suggest everyone call or email their senators, even if their senators support the bill. They need to know where their constituents stand. If possible, join and donate to an organization fighting for your right to vote. Write an op-ed for your local newspaper or media outlet expressing your views on how to make it easier, not harder, for you to vote.

Disenfranchised people are in danger of losing their right to vote, and people in pain are an important constituency. Forming a collective voice to advocate for all people who suffer chronic pain is just as important, although it is a topic for another day. The time to support these voting rights bills is now…before it’s too late.

Lynn R. Webster, MD, is a Senior Fellow at the Center for U.S. Policy (CUSP) and Chief Medical Officer of PainScript. He also consults with the pharmaceutical industry. Lynn 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.

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.

A Grumpy Old Lady in Pain

By Rochelle Odell, PNN Contributor

As I lay once again, in pain, waiting for my small dose of pain meds to kick in, I stare at the dark ceiling, asking, begging God to please help me. There is nothing but silence around me except for the low volume of my TV.

I find my patience, what little I had, is now gone. I find myself writing a post on Facebook that perhaps did not have to be as blunt as it was or as challenging -- as even I recognized it to be. 

Am I judging others in this battle? Has my nearly 28-year battle with CRPS and it's incessant, never ending pain turned me into someone I am not thrilled about? Am I judging good people, in pain like me, too harshly at times?

I find some online comments are made with little thought or logic by others. I know and tell people there is only one person or deity that can judge anyone and that's the man upstairs, God. And in all honesty, I don't have the right to criticize anyone for what they say or do, except for liberals. Okay, cardinal rule, don't bring politics into our battle for pain relief. I am sorry.

Why do those who obviously haven't read an article or post refuse to admit that their response makes no sense? I spend a lot of time reading articles, but many don't and I feel if you can't find the time to read, don't comment. There are times I may read a post that really galls me and I respond critically, then I think of those I may have upset.

Why did I do or say what I did? I guess because like all in pain, I am tired. Tired of hurting, tired of fighting to get pain management back to where it should be for all. Especially tired of the few wannabes who think it's cool to be part of the pain community -- a community we would all give anything not to be a part of.

The very few I do challenge proudly boast of the ever-growing list of ailments that they wear as a badge of honor. They proudly state no doctor will agree or diagnose them with any of the pain diseases that they have self-diagnosed. You know the type. They have gone down the list of symptoms, convinced they surely must have it.

For shame. They honestly believe they have been wronged. Those people bother me, because there are many who suffer unrelenting pain from diseases physicians have actually diagnosed. I have been diagnosed with several and I want no part of them. I do try to stick with the CRPS only. It was the first and worst of what ails me.

ROCHELLE ODELL

Adding more or reading off what I call our laundry list of ailments won't change my low dose of opioid pain medication. My pain management PA is very sweet and compassionate, but we all know that high doses of opioids are nothing but a memory. A memory of when we used to function. I want my life back without pain and without needing medication. We all want our lives back... period!

I have my life friends who I’ve known since childhood, and new friends I’ve met in the pain community. Like my family, they mean the world to me. Each person brings something I may need or I bring something to them that they need. Pain brought us together. And if it weren't for pain, our paths would never have crossed.

My life has spanned seven decades, sometimes flying by and other times dragging by ever so slowly. The adventures I had, the experiences, I wouldn't trade for anything. I am thankful to have experienced what I did. Too many pain patients don't, especially younger ones. All they know is pain. They can only dream of traveling the world like I did. Those of us who had a life before pain were able to experience places, people and things. The memories are bittersweet.

I suppose at 73 that I am old, very opinionated and faced with the reality God can come knocking on my door anytime. Although for some reason the age of 93 is set in my mind when he will take me. Can't imagine living in this pain for twenty more years.

I have learned in this pain journey that I don't have to win every argument. I don't have to win every point. That if I ignore an annoying Facebook post and simply log off, I don't develop a killer stress headache trying to prove I was right. Being right all the time makes for a probably obnoxious person. I don't want to be that way, I really don't, but it is my reality, my life, me.

When thinking of love, I have loved and have been in love. Do I want to be married again? Odds are no. Like most, I don't want to live my golden years alone but I have become so set in my ways, set in my routine, set in how I choose to live any day my way. If I want to wear my jammies all day and not comb my hair, I can. If another person was around, I would have expectations placed on me I may not want.

But I also get so tired of battling pain with no real source of help I can depend on. I have only me to depend on. I am not the only one alone and we do hurt the most.

If my pain is severe and I want to cry, I can, with no explanations. Although if I do cry my little sidekick Maggie, an 8-year-old dachshund, gets right next to my face crying with me. Don't have any humans that sit next to me and cry with me, although I know of some sweet pain friends who would if I asked. Little Maggie has been so vocal. I look at her and ask do I really sound that bad, that pathetic? Yes!

I don't want to come across as judgmental or too critical. I don't want to be the mean old lady in the neighborhood. But you know what? Living in pain, alone for close to 28 years, well, if the shoe fits...

If my comments come across as mean, try to remember pain has changed us all. I see that in the pain community. 'A' can't stand 'B' and 'B' is thoroughly disgusted with 'C.' Meanwhile, 'D' shakes their head asking why? Why do we say and act in ways that may not be nice?

Guess I will set the timer on my TV, pray to God one more time to please take my pain away, and close my eyes hoping sleep comes, if even for a couple of hours. And pray those around me understand why this grumpy old woman says what she does.

Rochelle Odell lives in California.

PNN invites other readers to share their stories with us. Send them to editor@painnewsnetwork.org.

Pain Is Not a Competition

By Mia Maysack, PNN Columnist

A question I've often encountered is, “Why make pain political?”

Here's a newsflash for everyone:  It was created that way. And not initially by us, I might add.  

Despite having lived with chronic head pain every single day for over 20 years, I’m still fighting for a proper diagnosis. The more tests, appointments, examinations and permission slips I get only feeds into the perpetual cycle of phone tag, hold music and Zoom links. Not to mention pandemic induced anxiety.

It's all done in the name of “patient centeredness,” but I find it all confining and traumatizing.     

This has led to me visiting with healthcare providers very minimally. I’m grateful to be able to slowly but surely distance myself, but I’m also aware that many won’t ever have that option or luxury. I have always been conscious of my privilege, almost dying while minding my own business as a 10-year old has a tendency to humble a person. That’s part of what fuels my fire to fight not only my own battles, but for the sake of others in the form of activism.

Common misconceptions are that a person must be able-bodied in order to participate in their own advocacy or that we are permitted only to advocate for a specific cause, such as limiting ourselves to whatever pain condition or treatment we identify with.

But if we expect people to care about what we’re going through, wouldn’t inclusiveness for other causes be a demonstration of mutual respect and support?  That is lacking in the pain community and beyond.  

For example, I’m severely allergic to most medications, specifically the “good stuff” for pain relief. But that hasn’t stopped me from being involved in efforts pertaining to the opioid crisis and healthcare access in general.

I was once invited to speak at a patient protest where I would have otherwise remained silent. Other patients who were there understandably did not want to be judged, ridiculed, exiled or singled out for speaking up about opioid medication, so I stepped up and shared my own story. For that, I was shamed afterwards, due to the fact I am not physically tolerant of pills!

If that ain’t political, I don’t know what is.                

It has been my experience that there’s tremendous difficulty in acknowledging someone else’s perception as being equally real and valuable as one’s own. This leads to a self-defense mechanism, cultivating a sense of validation that can come across as belittling what others have gone through. No one really knows what it is like to live a day in someone else's shoes

I don’t participate in groups fixated on ONE type of ailment. Discomfort of all kinds should be invited and welcomed because hurt does not discriminate and misery can’t be measured. Pain is not a competition. 

I have felt the need to step away from people who are not supportive. Instead of working to strengthen the inner bond that unites us, many would rather convey how much worse they have it than everybody else, instead of listening and learning from others.  

We're in the thick of it as a collective right now. It is necessary for the sake of our lives to inch closer toward a willingness to grow and project hope, especially when it feels like there is none.  That's how we can save ourselves and one another.   

Focusing on what separates us as opposed to how we're able to relate as humans is overly prevalent throughout the pain community and beyond. Suffering is playing out on a global scale and is much bigger than any of us. We’ll never drive true change in healthcare if we dismantle each other instead of the systems we’re fighting against.

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.

Can the Chronic Pain Community Unite Before It’s Too Late?

By Peter Pischke, Guest Columnist

What’s the quiet thing often left unsaid in the chronic pain community? An inconvenient truth that some patients and advocates would rather ignore?

Ed Coghlan touched on it when he closed his nearly decade-old blog, the National Pain Report, with a warning.

“In covering the chronic pain community, in addition to meeting hundreds of really interesting people, it is also evident how the community’s fractious nature holds it back,” Coghlan wrote. “Rivalries, which from where I sit look rather petty, prevent a unified voice for truly addressing solutions in fixing a broken health care system that simply does not work for the chronically ill.”

The truth is the pain community is too often the source of hate and weaponized toxicity. Not just against anti-opiate crusaders, but against each other. It’s a self-inflicted problem that may be the most significant handicap to putting together a united front to convince society to end opioid prohibition.

How bad is the problem? To find out, I interviewed over a dozen patients and leaders in the pain community. Included in this group are medical and academic professionals, civil rights activists and patient advocates. Most requested anonymity.

All agreed that there is an enormous problem of toxic behavior plaguing the movement, in which certain advocates target each other with vitriol and purity tests. The stories shared with me include death threats, stalking, harassment, theft, heckling at conferences and plagiarism.

This toxicity, unfortunately, doesn't stop with them. Mirroring the broader political culture online and following the examples set by strident advocates, some patients engage in rumor mills, back-biting and social media mobbing.

The backbiting does not go unnoticed. For some lawmakers and healthcare providers, the pain community is a by-word for crazies, especially online.

“They see the inner fighting, they see what's going on,” says pain patient and activist Jonelle Elgaway. “They also see that we're not united in any way. They ask me, ‘I see the cancer community, and none of that happens in it, does it?’”

Unintended Consequences

Sadly, some prominent advocates are willing to use the vilest attacks against their perceived enemies. They are often sent scattershot, aimed not only at anti-opioid organizations like Physicians for Responsible Opioid Prescribing (PROP), but people who lost loved ones to addiction and pain sufferers deemed insufficiently dedicated to the cause.

As one prominent physician told us, the vitriol creates unintended consequences that only reinforce the stigma that "patients are crazed addicts" – which hurts our ability to persuade leaders in government and medicine that pain patients need help.

Many of those we talked with have been victims of this hate firsthand. Some have staked their personal and professional reputations defending patients, sacrificing careers, relationships, finances and even their family’s well-being to fight for patient rights. One person sold their house so they could continue doing advocacy work. Another burned almost all of their professional relationships to stand up for patients.

Often working quietly behind the scenes, in places like Congress and the CDC, they are the community's most effective warriors. The recent gains we’ve seen, such as the American Medical Association finally taking a strong stand against the CDC opioid guideline, would not have happened without them. Yet, for their sacrifice, the community has rewarded them with bile.

The toxicity is so intimidating that few we spoke to were willing to go on the record. Many are more afraid of the pain community than they are of the news media or organizations like PROP.

The problem also affects our ability to get prominent people to support our cause. Elgaway points out that anytime a celebrity opens up about having chronic pain, unless they meet a purity test for opioids, they are attacked. For example, when actress Kristen Chenowith joined in a marketing campaign for Belbuca, she became an instant target on social media

“Everybody on Twitter kind of jumped on her. She’s famous and she could have been somebody that maybe could have helped us. And I understand you don't agree with her supporting this drug, but you can't jump on everybody that's trying to do something,” Elgaway said. “You know people are going to be afraid of us. They’re going to go back and tell people that chronic pain community is crazy.”

This circular firing squad reinforces negative stereotypes about pain patients, and pushes advocates and potential allies away. It also creates deep fractures in the community, making its most effective leaders too afraid or unwilling to collaborate. Too often, advocates are more concerned with marking turf and tearing each other up, instead of engaging with decisive action that might create real change. How can a coalition grow if every newcomer is pushed away?

This kind of behavior is foolhardy. Some advocates act as if they are the dominant force on the cusp of winning. But the reality is that despite millions of patients losing access to effective pain care, most Americans are still unaware of the pain crisis. What they do know is the story of the opioid crisis. And the media, government and many medical institutions are still invested in that narrative. 

Losing Focus

So why are patients and advocates doing this? I spoke to Dr. Terri Lewis to understand why the pain community can be so hostile, especially online. She told us the negativity reminds her of people “going through the stages of grief."

“It’s a group of folks who may not realize it, but they use social media to shout into the well and hear their voice echo back to them,” Lewis said.

Another factor Lewis points out is that there’s a fundamental cultural clash between pain patients and medicine. The world of medicine and research is slow, while patients want immediate solutions. When you watch doctors, researchers and regulators at a medical conference, the slowness of the process can seem like an infuriating betrayal. As a friend told me, “To them this is just academic, but to us this is our lives.” 

It is natural that pain patients feel angry at the world. They're often mistreated, denied medication and ostracized from society.

But just because we can understand why patients act badly doesn’t mean that behavior should be excused. Nor does it undo the substantial damage it does to the cause.

Dr. Forrest Tennant, a well-respected pain specialist who has sacrificed much for his patients, is concerned that some advocates have forgotten what’s most important.  

“It’s a group of folks who may not realize it, but they use social media to shout into the well and hear their voice echo back to them.”

— Terri Lewis, PhD

“I'd call for people to try to respect the other person's views. Do the Golden Rule: Do unto others what you'd have them do unto you. I know it sounds simplistic or awfully silly. This is a no-brainer to treat other people kindly,” Tennant said. “We are trying to help people with some very serious diseases that are going to end up with short lives, and we've lost focus on who we are trying to help." 

It isn’t easy to admit mistakes. Everyone makes them, including me.  What matters is that we learn from them and try not to let our egos get in the way. Community heroes like Dr. Red Lawhern encourage reflection and repentance.

“Remember, you can be amazed how much can get done if you don't care who takes the credit," says Lawhern. "Begin with an attitude of humility and the sense that it's not about you.”

Barby Ingle of the International Pain Foundation likens the pain community to a jigsaw puzzle. Every piece is different and sometimes its hard to find where they fit, but to complete the puzzle you need every piece.

“If you want to be the biggest help for yourself and other patients, do what you can do to help those you can help and know that there will be some who don’t want help or believe another way is best. It doesn’t make them not part of the pain community,” Ingle says. “Find or create your niche and work to make a difference, fulfil your goals, and be the best you can be. Be good to yourself and be good to others --even if you disagree.”

If the pain community really wants change, every patient and advocate must self-evaluate and adjust their behavior. We must stop aiming our guns at each other and learn to agree to disagree.

At the end of the day, whatever our disagreements, if we can improve pain care and get meds back for patients, nothing else should matter. We must stop being the community that people fear, and become an inclusive community that welcomes people to join our cause.

Peter Pischke is a freelance journalist and host of the Happy Warrior Podcast. Peter is also a disability activist and chronic pain patient living with intractable pain due to chronic pancreatitis.

This column is for informational purposes only and represents the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of Pain News Network.

A Toxic Violation

By Mia Maysack, PNN Columnist

On Saturday, I woke up to an experience far too common.

A column I wrote on my pursuit of holistic health had been shared in an online community for people with pain and chronic illness. The column was referred to as "shameful” and full of "bull crap." I was accused of being "insane,” a "bootstrap ableist" and “spreading hysteria.” You get the idea.

This type of toxic negativity online is mostly faceless and comes from hiding behind the comfort of a device screen. It doesn't belong in a supposedly safe space, nor does it help or improve anything. Even on my worst, most painful, dark and isolating days, I never have nor will I use that as an excuse to tear others down. 

Some people in the pain community claim to desire understanding, acceptance, empathy and compassion -- all the while offering anything but.

So many also demand change without the realization they’re contributing to the very problems they claim to want to resolve. It would seem the only fingers being lifted are to spread hate -- as opposed to directing that same passion toward legislative reform, writing a bill, calling Congress or signing a petition, for example.   

If we're not physically healthy enough to contribute fully to life, then bullying should be the last thing we’ve got the energy and time for.   

This takes me back to the very first (and last) "support group” I attempted to be a part of prior to starting my own. It’s prestigious, well known and in cahoots with many other affiliations.

Because I'm not spiteful and feel there's already enough hurt to go around, I won’t name or put them down.

In that group are thousands of people from around the world who could attest to the way I felt all my life. I hoped that that I’d finally came across a place where I belonged.

But when confiding to these people about a treatment plan gone awry (I still live with the repercussions to this day), they turned on me -- claimed I was just attempting to scare them, making things up, and that I should've kept the information to myself. Even my medical background was called into question, despite the grief I was still enduring over loss of career.

To make matters worse, prior to me even seeing any of this, the group’s administrators muted further commentary so I wasn't even able to defend myself or the way my words had been twisted. But they still left it there as a spectacle for all to see. It struck me to the core for multiple reasons, so I ultimately chose to step away and haven't looked back. 

Those of us who have come to a point of using our last bit of energy to reach out cannot afford being pushed off the ledge we are already on. The fact that isn't being contemplated or taken into any consideration is a sickness in itself. This toxic negativity is real and may be why my approach is internalized by others at times, even though that's not the whole picture of who I am.

How I live with multiple intractable, lifelong and incurable diseases is by continuing to study and having an intimate relationship with science via my own body chemistry.   

Whether it's a convenient truth or not, there's merit to the parasympathetic system. There’s power in working through trauma, taking ownership over our thoughts, approaching ourselves as a whole person and not allowing the conditions themselves to dictate our identity.

I've often been asked how I am able to live my life under the scrutiny of what I go through.  I don’t claim that I’m fixed, cured or have anything close to all of the answers. But I do know that instead of complaining, wallowing, and holding onto anger and resentment -- I choose to not allow this to define me.  My heart is poured into service, volunteerism and fighting for human rights -- for everybody, even those who throw dirt on my name. 

We are not wrong for how we feel. It's reactionary to lash out or play the blame game by turning on each other. It only intensifies the battle we're already in. Just because someone else's journey looks different and doesn't align with yours does not excuse, justify or make it acceptable to judge, ridicule or belittle them.

As long as those toxic violations remain a part of our approach to ourselves and one another, we shall remain sick.  

Mia Maysack lives with chronic migraine, cluster headaches 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.

3 Tips for Living With Chronic Pain

By Barby Ingle, PNN Columnist

A bunch of people on social media have been asking what my best tips are for the pain community.

With my health being so poor, as I am going through Valley Fever on top of all the chronic illnesses I live with, my thoughts immediately turned to health.  So many friends have helped me over the past few months with prayers and positive thoughts, or sending food or someone to help clean the house. It is all so appreciated and has shown me that people really care how others in the community are doing.

Here are three tips I’ve learned:

1. Share your pain story

2. Control your outlook, stress and pain levels as best you can

3. Keep a journal

We all have something that we are dealing with on a daily basis and sharing our stories provides hope to others by letting them know they are not alone. It doesn’t matter if you are sick or healthy, rich or poor, we all have challenges to face in life.

I share my experiences to let others know there are other options and reasons for hope. There is always something else to try. I may not always have immediate access to it, but I can work on a plan to create access.

Learning and practicing self-care is also key. It could be remembering to take deep breaths or meditate to help lower cortisol and other stress hormones. This helps me with relaxing, sleeping and stress reduction. This past year was very stressful for me, so I was taking daily walks to reduce stress and increase endorphins, which help lower pain.

I don’t drink alcohol or smoke, but drank two sodas a day for most of my life. I am currently abstaining from soda -- partially because of my last hospital visit and partially because I have no other vice in my life and wanted to see how long I can go without soda.

My husband has to have his coffee every day or he is cranky — and I was wondering if cutting out soda would do something positive for me. Sadly, it has not. But when I have encountered two stressful situations recently, I wanted that soda. My mind knew that it would soothe me, like a beer would for someone else. Soda is something that would help me feel better, but now I know I can live without it.  Just knowing that is a mental comfort.

Find your comforts, and if they are not already healthy ones, consider changing them to see if you can be soothed by something else that will be better for you in the long run. 

My final tip for patients is to track your pain level, medications, intake and activities every day in a journal for at least 120 days. This helps you and your providers see patterns, and you can adjust your treatment plans and goals more appropriately. Keeping a journal not only helps me see patterns, but it helps me communicate more effectively with my providers about my needs.

No matter where you are in your health journey, remember that you deserve access to proper and timely pain care and that you can find a way to get the care you need. It will take time and effort, but it is also possible.

Barby Ingle lives with reflex sympathetic dystrophy (RSD), migralepsy and endometriosis. Barby is a chronic pain educator, patient advocate, and president of the International Pain Foundation. She is also a motivational speaker and best-selling author on pain topics. More information about Barby can be found at her website. 

Defining Your Story As a Patient Advocate

By Barby Ingle, PNN Columnist

Almost a year ago, I covered the topic of motivational speaking as a patient advocate for the pain community. A lot of the information I shared dealt with how to plan and organize for advocacy, but the messaging you use is equally important. It must be specific to the audience you’re trying to reach.

I have learned that honing and defining my story is an important aspect of being an advocate. I used to spew it all out and see what sticks, but have learned over the years that when I concentrate on a few key points specific to my audience I will be a more effective communicator.

For instance, when I spoke at a rare disease event, I focused on how rare conditions have impacted me and how more rare disease research and funding are needed. At a cancer event, I spoke about my experiences with cancer and the missing support I see in that area.

There is no specific way to advocate, but there are some basic guidelines that can help get you started. The first step is finding your own voice. You want to have your own message and share your own personal story. You don’t want to copy or act like someone else. I have told newbies, “Don’t try to be me. You be you, and I’ll be me.”

When honing your message, start with deciding what you want to talk about. Sometimes it is important to go wide and broad when talking about chronic pain, but other times it’s important to discuss your most pressing experiences with a specific disease or challenge.

There are thousands of issues that need working on in the chronic pain world, from access to medication to finding a compassionate doctor. Defining the issue that’s important to you is key. You must be able to explain your point of view and back it up with data and science that is relevant and recent.

Keep it simple. Think of 2 or 3 takeaways for your audience. What should the listener walk away knowing when you are done?  In many cases, such as testifying at a legislative hearing, you’re only going to get 2 or 3 minutes to speak. Respect the time limit and practice beforehand so that you can explain and emphasize your takeaways. Leave a few moments for follow up questions.

Remember, you are not sharing your message to prove someone else is wrong or to undermine them. You are there to share your story and the challenges that affect your daily living. I do a lot of reality television, and producers always remind me to only talk about what I want to bring attention to. If I talk about someone else’s message, it takes away from my own. Tell them who you are, how you are affected by a policy, and what can be done to solve it.  

Your personal story should be about you and what you have gone through. If you’re a caregiver whose spouse was put through step therapy and had delays in getting proper medication, how did that affect you?  What did that delay in care do to you? Why do you care about this cause? Let the audience know why you care.

Next, give them the takeaways. There should always be “an ask.”  What do you want your audience to do for you?  A state legislator may be voting on a specific bill that you want them to support or vote against. Or tell your audience how they can help spread awareness and advocacy.

Keeping the requested action positive is important and keeps it moving in society. You could ask other patients to discuss an issue with their friends or to be sure to vote. You can ask for just about anything, but be as specific as possible. If you are asking for others to make a change or believe in something you advocate, then you must show some expertise on the topic.

Understand that some words are trigger words that should be avoided. Instead of talking about how hard it is to get “opioids” or “narcotics,” say patients need better access to “pain medication.” They are all descriptors of the same thing, but have very different meanings and connotations.

It takes a lot of courage to share health topics and challenges we’ve been through. Many advocates, including myself, are ridiculed and shamed. PNN had a great column on this last month, “Stop Shaming Pain” by Mia Maysack. As Mia explained, you may encounter negativity even within our own pain community.

Your story should take others on the journey you’ve been on. Think about how you want your audience to feel and what your end goal for them will be. Being yourself, being vulnerable, and sharing your story are powerful ways to engage the public and create change.

Barby Ingle lives with reflex sympathetic dystrophy (RSD), migralepsy and endometriosis. Barby is a chronic pain educator, patient advocate, and president of the International Pain Foundation. She is also a motivational speaker and best-selling author on pain topics. More information about Barby can be found at her website. 

The information in this column should not be considered as professional medical advice, diagnosis or treatment. It is for informational purposes only and represents the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of Pain News Network.

Stop Shaming Pain

By Mia Maysack, PNN Columnist

I've encountered and witnessed shaming several times in the pain community. It’s as if there was a contest to compare one pain to another.

I once shared a personal experience online about a specific treatment option and got ripped apart by people who disagreed.

Then came a debate pertaining to how to properly label my specific head pain. Due to the fact I have cluster headaches, yet also live in a constant state of migraine, I've used the term “migraine clusters.” That caused offense and was deemed incorrect. No one debating me came up with a proper label for my never-ending pain, so I'm still trying to figure that one out.

There are also questionable looks and inquiries about my health, because I don't have a wheelchair, visible cast or a gushing wound.

I've also encountered others describing their ailments, only to cut themselves off by saying, “Oh, but it's nothing like what you endure!"

Our experiences don’t have to be the same for them to be valid. That's a mind frame the world as a whole could do well to adopt.

There have been times I've partied in my own pity for far too long, but I've since learned that serves no positive or productive purpose past a certain point. Visit those feelings and then send them on their way. Don't allow them to unpack and live in your brain. I'm not preaching, this is just as much a reminder to myself as anyone else.

We as human beings have all been through something that has changed us. A large portion of my life has been dedicated to the medical field. Nothing gave me a rush quite like having a full floor of patients that were well taken care of.  I used my career for a long time as a means of distraction from my own pain, because how couldn’t one get over themselves while constantly surrounded by people who have it much worse than you?

Newsflash to us all:  Whether in a hospital or walking around a park, there’s no possible way to know what someone is going through, feeling or what their circumstances have been up until the point your paths might cross.

We are all faced with hardships, some more than others, but pain is pain. Each individual is at a different place in their journey and each personal experience is unique.  This is a remarkable thing, because it provides a golden opportunity for us to learn from one another -- as opposed to having a ridiculous and unnecessary divide as we cater to the “I am offended” epidemic our world seems to be inching closer to by the day.

As an advocate and a person, my intent is never to cause insult. However, I am also not afraid to use my voice in an effort to get important conversations started. 

Having a difference of opinion is acceptable, but disrespect or tearing one another down is absolutely not.  Could we all at least agree that there's enough suffering already happening in our lives? Why contribute to it with each other? 

Mia Maysack lives with chronic migraine, cluster headaches 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.

The information in this column should not be considered as professional medical advice, diagnosis or treatment. It is for informational purposes only and represents the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of Pain News Network.