A Pained Life: A Tortured Wait

By Carol Levy, PNN Columnist

I just heard a woman on TV talk about her recovery from the coronavirus. “I am feeling absolutely horrid, but at least I know there is an end in sight,” she said.

This came on the heels of an episode of Law and Order I was watching. A woman who was tortured had bandages on all of her fingers.

“This man showed up in my apartment. I don’t know who he was. But he wanted information,” she said. “He burned my fingertips. I would have told him anything to make the pain stop.”

Many years ago, I saw an ophthalmologist. It was after the start of my trigeminal neuralgia. Any touch to the affected area of my face, even a strand of hair or a wisp of a breeze, triggered horrendous pain.

I reminded him, “Please warn me before you touch my face so I can prepare myself for the pain.”

He turned to another doctor and said, “This is how you do torture. You reduce their tolerance so all you have to do is touch them to cause pain.” Then he proceeded to touch my face and set off an explosion of pain.

Pain is horrendous. It is something we are biologically programmed to avoid. But there is no end in sight for those of us with chronic pain. Torture is a fact of life for us.

Tell someone you have pain from a sprained finger, a broken foot or a stiff neck, and rarely will you not get understanding and sympathy. Tell someone you have chronic pain and often the reply is, “Guess you have to learn to live with it.”

It is bad enough in normal times, but right now is anything but normal. Many of us with chronic pain have an added stress to the normal stress of living with pain.

My new brain implant is causing more pain than before the surgery. I cannot see my neurosurgeon. His office canceled two upcoming appointments.

I will probably not be able to see him until June or July at the earliest. The patients who can see him now are those who may have a brain tumor or another serious illness.

Once self-isolation ends, as a person in pain I will be close to the end of the line in terms of when I will be seen. I get it. It makes sense. But it adds to my feelings of aloneness. I have no doctor to help me and fear the pain will get worse. There's nothing I can do.

“Learning to live with it” is even harder when the normal resources are out of reach. The one thing we can count on is what the coronavirus patient said: “There is an end in sight.”

For us, that ending will be when we can see our doctors again and get our medications, therapies and treatments without being turned away.

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.”

Now It’s Our Turn

By Dr. Lynn Webster, PNN Columnist

These are hard times. When our emotions are intense and frayed, it’s often helpful to share those feelings.

Pain News Network, in collaboration with the International Pain Foundation and the Chronic Pain Association of Canada, is conducting a survey to see how the coronavirus pandemic is affecting people with chronic pain and chronic illness — who are most at risk from the virus.

They want to hear about your worries, concerns, and how you are trying to find meaning and purpose in a time of crisis. The survey is one way in which you can stay connected with others.

I encourage you to take the survey and share it with as many people as possible. Click here for the link.

The survey findings will be sent to those who request them. Hopefully, seeing the results will reassure you that you are not alone.

Other Pandemics

History shows us again and again that we are not alone. The world has always experienced widespread traumas — and now, it seems, it is our turn.

Fortunately, COVID-19 is not the Plague of Justinian, which killed half the people in the world, or the Black Death (bubonic plague), which killed at least one-third of Europe’s population. Projections for COVID-19 are nowhere near as deadly.  

Our forebears have been through other crises, although they were not of the magnitude of the two plagues. Many of them lived to tell their children and grandchildren about them, as we’ve experienced in our own families.

My paternal grandfather was my lifelong hero. He was strong and selfless, and he worked hard to take care of his family. He did everything necessary and more, without ever questioning why or complaining about the unfairness of life.

He and my grandmother lived through the 1918 Spanish Flu pandemic, which sickened and killed tens of millions of people during World War One. Doctors had no anti-viral medications or vaccines at the time.

Social distancing worked, fortunately, for the cities that practiced it. However, there were few other tools society could count on to cope with the pandemic. Beyond social distancing and masks, survival was a matter of luck more than anything else.

My parents endured the stock market crash of 1929 and the Great Depression. They also lived through World War II. Like all Americans, they experienced rationing of "luxury" items such as meat, sugar and gasoline. They hoped and trusted that their children, and their children's children, would never have to suffer the terror and deprivation they had faced.  

They hoped in vain. My siblings and I experienced the Vietnam War and the first Gulf Conflict in 1990. We saw the Twin Towers fall on September 11, 2001 and watched that lead to wars in Afghanistan and Iraq,

We lived through the AIDS epidemic. We saw a mass shooting at Columbine in 1999, and then we watched as Sandy Hook and other schools in the United States also became scenes of carnage. We witnessed thousands of people needlessly lose their lives.  We also experienced two major stock market declines, the first in 1987 and the second in 2008.

My wife and I assumed, perhaps as you did, that we would never face life challenges as great as those our parents and grandparents endured. We were wrong. Along with our children, grandchildren and the rest of the world, we now face a pandemic that has already caused over 100,000 deaths, closed businesses and created mass unemployment.  

What Lies Ahead

It may be too early to predict the eventual toll this will take on human lives. The resultant economic disaster could lead to another depression. Some estimate that the U.S. could see more than 30% unemployment -- far exceeding the joblessness of the Great Depression. For those who survive, it may take years for their personal finances and retirement savings to recover. 

This feels different from everything we have read about in history books. Tragedies are only stories until they happen to you. 

People with chronic illnesses, those who are under-insured or uninsured, and healthcare workers who are on the front lines risking their lives every day will likely be hit the hardest. However, this horror affects all of us. We find ourselves socially isolated, financially challenged, frightened for our loved ones, worried about the unknown, and perhaps dealing with serious illness.  

The lack of access to healthcare, medications and even the basic necessities of life will impact our physical and mental health. Even if we ourselves aren't suffering, people we care about certainly are. 

However, it is times like this that can bring us together to fight a common enemy. The acts of decency, bravery, creativity and generosity we see everyday should inspire us. If you follow #upworthy on Instagram, you can see hundreds of examples.  

Someday, our children’s children will read about COVID-19 in history books. Surveys are one way we can record our challenges, feelings and responses to these extraordinary days. Please take this survey and share the link widely. Thanks, and be well. 

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.

Opinions expressed are those of the author alone and do not reflect the views or policy of PRA Health Sciences.

I Was Lied to by My Pharmacist

By Colleen Sullivan, Guest Columnist

I wrote an article years ago titled "Humiliated by a Pharmacist" about how difficult it is to be a chronic pain patient and to get prescriptions filled for pain medicines.

I would love to report things are better now, but sadly the truth is they aren't.

I was diagnosed with Mixed Connective Tissue Disease (MCTD) in 2001. Having MCTD basically means a person has two or more overlapping autoimmune conditions. Mine are dermatomyositis, rheumatoid arthritis and psoriatic arthritis. These are all very painful conditions to have.  

Since I've been dealing with MCTD for so many years, I've dealt with a lot of different pharmacists and learned a few things.

Whenever I enter a pharmacy for the first time, I like to speak with the manager, explain my conditions and what I need from them. Then, I ask what they need from me and if they are willing to work with me. I just want to make sure we understand each other and are on the same page. 

Picking up my prescriptions went smoothly for awhile. It was still stressful and scary to approach the dreaded pharmacy counter and hand over my prescription for an opioid. They still looked at the Rx and up at me with judgmental eyes. They still had an attitude and no empathy whatsoever.  

COLLEEN SULLIVAN

But I managed to find a place and a head pharmacist who was willing to work with me. It was a small pharmacy that wasn't part of a big chain and I thought they weren't going to be the "med police" like Walgreens. You know what I mean: Pharmacists who think they know more than your specialist and that it's somehow their job to judge if you're worthy of your medicine or not. 

This pharmacy is located in the same building as my pain specialist, which I thought was great.  First, if they have any questions or problems, my doctor is right upstairs. Second, it's super convenient being one floor below. I already have to drive 4 hours round trip to see my doctor in Homestead, Florida because there are no doctors in the Florida Keys willing to treat any pain patients. 

So, I went to this place and spoke to the owner and head pharmacist, Claude, who said it'd be no problem at all and he'd be happy to work with me. He assured me they have a special relationship with a drug distributor and a backup vendor as well. I was finally able to relax and not have a flare up every month from the stress of going to a pharmacy.  

Things were good for six months or so, but then suddenly the whole staff started acting weird towards me. Here we go again, I thought. They started insisting I call them days in advance every month to remind them I'm a customer of theirs and to order my medication. I didn't mind doing that, but the more I thought about it, isn't that their job?

They'd assure me on the phone that everything was good, they ordered it, and it'd be there for me when I needed it.  

Then one day I made the two hour drive there and handed over my prescriptions. They went to the back and whispered to one another. That made me extremely anxious. Then, they came up and said, "Sorry, we don't have it." 

I stood there frozen in disbelief before asking, "Don't you remember talking on the phone with me and assuring me you had it?"  

Claude just shrugged his shoulders and said, "I can't help you. Sorry. I can order it now." 

Order it now? That means I would have to make the 4-hour round trip drive the next day just to pickup a prescription.  

This happened from then on, almost every month. When they didn’t have my meds, sometimes Claude would nonchalantly say, "Just drive around and look for it."  

JUST DRIVE AROUND AND LOOK FOR IT?

If you walk into a new pharmacy with an opioid prescription, it never goes well.  They look at it, look back at you and say, “We don’t have it.” They don't look in the back. They don't check the computer. They just say no. 

One thing you should know about me is I really hate confrontation. Stress makes my conditions worse, so I try to avoid it at all costs. I never argue with them. I meekly walk away and, out of desperation, cry in my car. 

I kept trying to get my prescriptions filled at this small pharmacy, because each time they'd apologize profusely and say it was an oversight and won't happen again.  

One of the last times I went there, I called in advance again. Claude says, "No problem. I ordered it and it's here. I'm looking at it. No worries."  

I get there and he says "Nope, we don't have it. It’s a problem with the distributor. Wait a couple of days and they'll get it." The whole time he's talking, I'm thinking, “You lied to me. Why did you lie?” 

So I wait. Three days later, I call and Claude says he can't get it. I end up having to go to Walgreens -- and that's a whole other story -- but eventually Walgreens gets it for me that month with stipulations.   

But now I'm three days behind in my medication. I have to get infusions every month on a particular day and Claude is well aware of that. Being three days off means two 4-hour round trip drives a month instead of one.

The next month. I called a week ahead because Claude had assured me he would work it out. But on the call he says, "Sorry, it's still a problem with the distributor."  

Out of curiosity, I asked who was the distributor. He tells me it's Cardinal Health.  

I decided to call Cardinal myself and within 20 minutes I find out there is no issue on their end and they can ship it to that pharmacy within a day. I think, this is great! Problem solved and I don't have to keep bothering Claude.

I called the pharmacy to tell Claude the good news and he was furious that I called Cardinal. He's literally yelling at me over the phone saying, "How dare you!" and "Who do you think you are?"  

I thought I wasn't just helping myself, but the pharmacy as well with the distribution problem they kept telling me about. Claude then refuses to receive the shipment from Cardinal and says they no longer want my business because it's "too much work.” He says he's done with me and tells me not to come into his pharmacy again. 

After hanging up and crying for 20 minutes, I start to realize there never was a distribution problem. It was all just a lie and he’s angry at me because I figured it out. Keep in mind this is two days before I'm supposed to refill. Because of his lies, I now had 2 days to restart the process of finding a whole new pharmacy. 

Honesty, it's sad that chronically sick people are being treated like this by medical professionals. All Claude really had to do was be honest and say, "I'm not comfortable working with you anymore. I will fill them for you one more time, so you'll have a month to figure something else out."  

If he could've just been professional and told the truth, there would have been no problem.  

Colleen Sullivan lives in Florida.  

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

Finding Resiliency in a Pandemic

By Mia Maysack, PNN Columnist

This pandemic has broken my heart for multiple reasons, aside from the obvious ones. Knowing so many are displaced, unemployed, and losing things they've worked their lives for.

Being aware of the impact, watching the number of those infected or lost rise, as well as repeatedly witnessing countless people flat out ignoring the simple rule of staying home, has exposed multiple layers of the broken foundation that our country is built on.

If we don't address these issues, it's my belief that this crisis is only just the beginning.  

Many believe that “healthcare is a basic human right." Though I couldn't agree more with the ideology, why is it this statement carries more weight when proclaimed by healthy people, yet chronic pain patients beg regularly to be seen, heard, treated or even believed?

The changes in the healthcare system in response to the coronavirus have been astounding. Suddenly telehealth is in vogue and physicians are returning phone calls. The AMA wants the rules waived on opioids and other controlled substances. And complimentary healthcare resources and advice are being released on endless platforms. Does it really take a pandemic in order to do right and join forces?

So be it.  Instead of remaining perturbed, I've chosen to rejoice over the fact these things are possible. And I definitely plan on remembering this when the immediate threat blows over. Understanding, flexibility and convenience should remain part of our healthcare system when we re-navigate our new normal.    

Those who are healthy have been complaining about boredom, not being able to do what they want, feeling isolated and overwhelmed by changes they've been forced to make.

Welcome to everyday life for people living with chronic pain and illness!

Many who've tested positive for COVID-19 have recovered, which is something I’m grateful for -- though personally, I am unable to relate to.

There's deeply rooted disappointment in our government. The fact it took so long to create an action plan, on top of the fact the main hang-up revolved around saving the economy, not people. I suppose that isn't anything new, but it gifted us with the exposure of national shortcomings and has been a wakeup call.

There’s a saying used in politics that originated from Winston Churchill: “Never let a good crisis go to waste.”

There’s not much that is ‘good’ about this, other than the fact it is demanding we grow as individuals and come together, cultivating a greater comprehension and sense of awareness. If handled properly, many lessons can be learned from the crisis and we can implement changes in everyday life as we know it.

As people living with chronic illness or pain, we have proven that resiliency is a very real part of who we are. Remembering that can assist in calming our nerves and help us focus on what matters most.  

Toilet paper alone won't save us.  

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.

Are You Back on the Pain Chain?

By Ann Marie Gaudon, PNN Columnist

Societal messages constantly tell us that we need to control any and all pain before we can be happy.

What happens when this is not possible? I’ve said it before: In order for me to be pain-free, I would have to be rendered unconscious.

Control of “clean pain” -- biological pain that can’t be fixed --  is very attractive, but in a never-ending quest to control it, we end up with the pain controlling us. That’s when “dirty pain” begins -- we focus too much attention on the negative thoughts and feelings associated with pain.

One form of dirty pain is called “Mental Scripts.” These include what our mind tells us about our pain experience. Here are some examples: 

• Searching for reasons you’re in pain: You might say to yourself, “I told you not to lift that. You know what happens when you aren’t careful!” 

• Yelling epithets to yourself in your head: Your mind might be shouting, “You hopeless idiot! You’re such a failure at life!”   

• Reciting rules you’ve established for yourself around your pain: You might tell yourself, “Exercise is not an option while I’m in pain,” or “I cannot live a good life with pain.” 

A second type of dirty pain is called, “Avoidance Behaviours.” This means anything you do or avoid doing in order to try not to feel pain. This behaviour can be particularly perilous because the act of avoiding an experience due to some feared outcome does not always reduce pain, it can actually increase pain. Here are some examples: 

• Using medications in an attempt to avoid pain altogether rather than to dampen your pain enough to live your life.  

• Refusing to exercise altogether because you are in pain. 

• Refusing to work or volunteer in any capacity because you are in pain. 

A third type of dirty pain we subconsciously engage in is called “Values Discrepancy.” This means choosing avoidance and moving far away from the life that you want to live.  

When you are knee-deep in Values Discrepancy you are living the antithesis of a life that you value. For example: 

• Giving up on a higher education because you fear the pain will not allow you to concentrate. 

• Quitting your dream job because of the pain you felt when you were there. 

• Choosing not to have a family because parenting could be difficult if you are in pain.

Avoidance behaviours (a form of trying to control) are indeed very seductive. They look like the answer. Have you ever seen an advertisement for any type of pain control? The patient takes the magic pill or treatment, the pain is completely resolved, and the patient is seen happily playing tennis or rolling around in the grass with their child.

Western culture rarely if ever shows us reality. The control paradigm is such that the more choices we make attempting to control the pain, the smaller and less meaningful our lives end up. We become stuck on the “Pain Chain.” For chronic pain patients, the manifestation of dirty pain typically looks like this:

The more we struggle against what is uncontrollable, the more we will suffer. The good news is that no one is fated to suffer from dirty pain for the rest of their lives. If you find yourself suffering from any of these symptoms, find yourself a qualified therapist in chronic pain management.

When chronic pain is part of our lives, we need more resilience, not less. We grow resilience by practicing and learning not be ordered around by our thoughts and feelings. Psychotherapy can help you with workable solutions to rise above life-draining, self-defeating patterns of behaviour.  

I once was choked off in the Pain Chain, and now I help others to unleash themselves. With the right tools, it is possible to get back to living a life in the service of our values – not in the service of our pain.

Ann Marie Gaudon is a registered social worker and psychotherapist in the Waterloo region of Ontario, Canada with a specialty in chronic pain management.  She has been a chronic pain patient for over 30 years and works part-time as her health allows. For more information about Ann Marie's counseling services, visit her website.

How Fear Can Make the Coronavirus Worse

By Dr. Lynn Webster, PNN Columnist

At 7:09 am on Wednesday, March 18, 2020, a 5.7 magnitude earthquake struck Salt Lake City, Utah — the city in which I live. Though it caused little damage, the earthquake created immense fear. 

This occurred during a week in which the Dow Jones Industrial Average plunged, setting a record for the largest stock market drop in U.S. history. Although only about half of U.S. citizens own stocks, the impact of the enormous amount of wealth lost will have a ripple effect on every American. 

In addition, like the rest of world, we face the coronavirus pandemic. Because Salt Lakers have experienced a trifecta of calamities, our fear is palpable.

But intense fear is not limited to Salt Lake City. It is ubiquitous. People all around the world are experiencing nearly unprecedented levels of fear in the face of the pandemic. As a friend of mine said, it feels like an apocalypse of biblical proportions.

Fear is a primordial emotion that can protect humans from danger, but it can also be destructive.

Typically, fear is proportional to three factors: the magnitude of the threat; how well we can predict and control the potential harm; and whether we can see that the threat's end is in sight. Since we know so little about the novel coronavirus, all three factors contribute to our fear.

A 2016 paper published in the journal Disaster Health described Fear-Related Behaviors (FRBs) that occur during mass threats to a society. The study found that FRBs have four possible outcomes: they can increase harm, have no effect on harm, decrease harm, or prevent harm. Since we are all terrified, it may be helpful to know the consequences our fear may have.

What We Can Learn from the Ebola Outbreak

The 2013-2016 West Africa Ebola Virus Disease (EVD) outbreak may be the best and most recent example of how to predict the effects of FRBs on COVID-19. 

More than 28,600 people became ill from Ebola in Guinea, Liberia, and Sierra Leone. Given the virus’ high mortality rate of nearly 40 percent, it caused approximately 11,300 deaths.  

Examining the behaviors and outcomes of EVD may portend the outcome of the COVID-19 pandemic if the FRBs we exhibit with the novel coronavirus are proportionately similar to those caused by Ebola outbreak.

There were five overarching consequences of FRBs during the EVD crisis:  

1. Fear accelerated the transmission of Ebola. Those who lived in infected areas tried to escape by traveling to places they perceived as less infected. In effect, they tried to outrun the infection, but that proved impossible. They carried the disease with them, infecting Ebola-free communities and increasing the number of deaths. Ignoring the risk would have the same effect in the United States. 

2. Fear — in combination with lack of resources — discouraged some of those who were infected from seeking care for their disease. They may have died from EVD unnecessarily. Those who are underinsured or lack insurance in the United States may also decline to seek care. 

3. The fear of being exposed to EVD prevented some people with other life-threatening diseases from getting the health care they needed. That may happen now, too. People who have heart disease, diabetes, immuno-suppressed cancer, or chronic pain may not seek medical treatment because they fear being exposed to the coronavirus through contact with healthcare providers or other patients. 

4. Fear of EVD increased the number of people with mental health disorders. Fear-induced stress may have caused trauma and exacerbated existing mental health problems. Also, survivors involved in providing care to the ill were often blamed for spreading the disease. Some may have suffered from survivor's guilt. Depression and other mental health disorders were common in survivors.  

5. The belief that specific countries were responsible for the origin and spread of EVD led to widespread discrimination and ostracism. This, in turn, caused serious social and economic consequences. We see that scenario play out again whenever someone calls the coronavirus the “Chinese virus.” 

Fear Can Increase or Mitigate Harm 

On the other hand, fear can also mitigate harm. In the case of COVID-19, the prospect of what may happen if we do nothing is overwhelming. Therefore, our fear may motivate us to protect ourselves and our families by adhering to the advice of experts in such health organizations as CDC and WHO. That may save lives. 

Consider your own behavior in light of the five FRBs described above. Ask yourself: 

• Could any of your avoidance or panicked behaviors be accelerating the transmission of COVID-19? 

• If you have symptoms that suggest you may have the coronavirus, are you in denial rather than seeking medical care? 

• If you are coping with other medical conditions, are you avoiding the doctor's office, or are you pursuing the health care you need? 

• If you are feeling overwhelmed by the fear and stress inherent in this situation, are you seeking support or professional help? 

• Do you acknowledge, and help others understand, that China, as the unfortunate initial vector of COVID-19, bears no responsibility for it and does not deserve to be our scapegoat?

In such an interconnected world, our individual responses determine our collective experience. We must not let fear make the crisis worse. Fear can help protect us, but it can also be our enemy.

We don't need another enemy. The virus is enough of an adversary for us to deal with. We must avoid giving fear undue power over our actions and judgment at such a critical time. 

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.

Opinions expressed are those of the author alone and do not reflect the views or policy of PRA Health Sciences.

Misdirected Anger Over the Opioid Crisis Hurts Innocent People

By Dr. Lynn Webster, PNN Columnist

It's practically a cliché now to refer to the five stages of grief: denial, anger, bargaining, depression, and acceptance. However, it was Elisabeth Kübler-Ross's classic book, “On Death and Dying: What the Dying Have to Teach Doctors, Nurses, Clergy & Their Own Families,” that first helped us understand how people grieve.

Since the book was published over 50 years ago, mental health experts have recognized that grieving is a personal process, and that not everyone will experience all five stages. Sometimes, people skip a stage altogether, or spend more time in one part of the healing process than in another, or circle back to stages they have already traversed. It’s not always a linear process. Kübler-Ross believed grieving itself was a constructive process that moved towards healing.

While her book focuses on grief associated with death and dying, we also experience the various stages of grief with other losses. The coronavirus may cause the loss of our daily routine. Addiction may bring about the loss of our jobs, family support and even self-respect. Chronic pain may mean the loss of a life once lived. We can experience the stages of grief Kübler-Ross describes any time we are consumed by a loss.

Trapped in the Anger Stage of Grief 

For most people, anger is a part of grieving and sometimes a person gets a bit stuck in it. Experiencing prolonged anger can be destructive. We can internalize that anger, hurting ourselves, or we can express it toward others. In some cases, our rage can be directed at people we don't even know. 

Misdirected anger can cause harm. We create physical and emotional harm for ourselves when we rage at people and circumstances beyond our control. Also, we can cause harm to innocent people when they are caught in the crossfire of our misplaced anger. 

Pain News Network recounts how anger affected one of the pain community's clinicians, Dr. Thomas Kline. Kline advocates for people in chronic pain and has used social media to dispel what he feels are myths about opioids.  

A mother who lost her son to a heroin overdose came across Dr. Kline's Twitter account. In her grief, the mother took offense at what she perceived to be Dr. Kline's advocacy of opioids. She filed a complaint with North Carolina's medical board, alleging that he was "giving out information regarding opioids that is not correct and could cause harm."  

She was not Dr. Kline’s patient and neither was her son. In fact, she didn't even know him. But she was convinced he was a bad doctor because he treated people in pain with opioids. Her complaint triggered an investigation that led to Dr. Kline losing his DEA license to prescribe opioids and other controlled substances. Now his 34 patients are suffering.

It is horrible for parents to lose a child, and it is unfortunate that this mother has only a partial understanding of how opioids cause harm. 

However, we can understand her anger. She has suffered a loss, and she believes opioids killed her beloved son. "My son used opioids, and opioids are lethal. Now my son is gone. Therefore, opioids killed my son," may be her logic. 

Separating Prescription Opioids from Illicit Opioids 

It is flawed thinking to lump prescription opioids together with illicit opioids such as heroin. Prescription opioids have a medical purpose, whereas illicit opioids do not. This mother did not lose her son to an overdose of prescription medication.  

It's not only people who have had personal tragedies in their lives who may be inappropriately angry. We also see people who write about the opioid crisis, policymakers, regulators, and the public venting their contempt toward anyone who defends opioids as a legitimate therapy for some patients.   

People can be forgiven for getting angry in the moment. If they have experienced a personal loss from prescription opioids, it’s reasonable for them, in their grief, to blame opioids or the doctor who prescribed them. But it's harder to accept their vengeance when they draw a false equivalency between prescription opioids and illicit drugs.  

Opioids, like all medications, have benefits and risks. Unfortunately, people with chronic pain suffer because of misunderstanding and misplaced anger.  

People whose loved ones have died from addiction often receive sympathy, while people in pain are left unattended in the shadows. Of course, people with addiction as well as people with pain deserve treatment rather than abandonment. Anger at the doctors who use opioids to try to treat their illness is unhelpful and inappropriate. 

I'm reminded of Nan Goldin, a New York-based photographer who survived an addiction to OxyContin and has now devoted her life to fighting the opioid epidemic. Her anger is directed at the Sackler family and Purdue Pharma, whom she holds responsible for the opioid crisis — even though, according to The New York Times, Goldin "overdosed on fentanyl, which she thought was heroin."  

Neither of those substances are produced by Purdue Pharma.  

People in grief may transform their sorrow into rancor without looking squarely at the whole truth or confirming their beliefs with research. Their anger may feel healthy and productive to them, because anger provides an outlet for grief. The rage they feel against opioids and the people who manufacture, prescribe, or take them allows those grieving to not to have to deal with more difficult issues, such as the loss of a loved one or the real reasons why we develop addictions. 

In the final analysis, misdirected anger is destructive and harmful to innocent bystanders, who become collateral damage. It hurts others. It may hurt society. And it also hurts the one who is stuck in the grieving process and, unfortunately, has not yet come to a place of healing. 

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.

Opinions expressed are those of the author alone and do not reflect the views or policy of PRA Health Sciences.

The Other Epidemics

By Mia Maysack, PNN Columnist

Those who believe the coronavirus outbreak is the only epidemic underway are sorely mistaken. There are multiple epidemics happening due to opioid hysteria, primarily innocent patients being neglected in their pursuit of pain management.

This is being confused with the very real addiction problems that are on the rise. Too many don't know the differences between the two, nor do they seem to care.

These failures in our healthcare system and our human rights continue to be violated.

The last time there was a virus circulating in my home, I was thankful to have been able to hit up the nearest convenient store for necessities. My ID was checked for a cough suppressant. Had I been denied it, recovery surely wouldn't have been smooth or perhaps even possible for someone who literally cannot afford to become any sicker.

This is exactly what's happening to millions of people on a much grander scale, who are rightfully prescribed something by a professional -- which respectfully isn't anybody else's business. Their legitimate medical need is far more serious than the common cold.    

I'm passionate about this cause, though I’ve been shamed for speaking out because it hasn't been a large part of my personal story as pain meds are intolerable for me.   

However, I am not immune to its repercussions, having lost several people to overdoses and knowing many who live in a state of dependence upon a substance of some kind or another. I've witnessed what should've been a short-term treatment turn into something where a person literally feels as though they cannot live without.

But an addict seeking a fix and a patient desperate for pain relief aren't the same.      

I've seen the hopelessness firsthand when access doesn't come through. And even with it, minimal comfort is experienced for short periods of time, which is always better than the contrary. Having options for pain management as well as a health team that cares are direct contributing factors in quality of life or lack thereof.   

Missing a Lifeline

The present-day coronavirus panic shines light on another example. How is one to cope without water, toilet paper or canned food if or when this spreads further and possibly hinders the ability to simply maintain? What if you couldn't get what you needed and always felt under the weather? 

Adding insult to illness, why does it take the threat of a modern-day plague for reflection on things that should already be happening? 

Because of the opioid prescription crackdown, there are countless individuals who remain unable to grab hold of a lifeline. It has been taken away from them or has yet to present itself. Both are dire and require immediate attention, acknowledgement, awareness and action.       

Corporate profiteers and those who live by “Do No Harm” are working in tandem -- resulting in treatment being withheld, licenses threatened, and the lives of providers and patients alike being shattered. 

In response to these very real issues, we've reverted to extremes — despite the whole “it's a problem, get rid of it” approach not proving to have been a sustainable answer.  Ever. 

Another issue is that the pain community is so passionately up in arms that we often fight against each other.

Recently a colleague of mine literally stated they "felt guilty" because their discomfort had improved! When that happens, the tone becomes “then you're not that bad” and don’t have a right speak out. Or in my case, being physically incapable of tolerating pain meds has earned me the title of an ignorant bigot ableist.

People throw these insults around like grenades that obliterate any potential to connect or relate. I also find the trolling, comparisons, labeling and hate disheartening because it is so misdirected.

The intent should be to be on the same page as human beings who live in pain. It's not about what specific type, what caused it, how long you’ve had it, or whether a certain treatment option has helped you. It’s not a contest. This is far bigger and way more important than any of that. It's an opportunity to reconstruct the cracked foundation of brokenness that has become exposed.

But that won't happen unless we set differences aside, remain focused on what's important, work collectively in problem solving, and devote the same effort used to tear others down to instead cultivate a solution.  

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.

A Pained Life: Rationing Pills

By Carol Levy, PNN Columnist

Well, it finally happened. I have been on codeine for many, many years. I have tried other opioid medications, such as morphine, Demerol and methadone, but none helped.

Truth be told, neither does the codeine, usually. Some days my pain from trigeminal neuralgia calms down when I take it. Other times, it has no effect.

For the most part, I take codeine because it gives me a false sense of control. It’s something I can do when the pain gets really bad. I let every prescribing doctor know that. And none has ever refused to give me a prescription. 

I take about one pill a week. Not because the pain is rare, I’ve just learned to stop doing many of the things that triggered the pain, such as eye movement and eye usage. I am now about 80% housebound as a result.

I’ve been having a bad time lately with my deep brain stimulator (DBS) implant. It makes the pain worse when I have the device turned on. The result? I have to take more codeine. 

The last time I saw him, the pain management doctor I’ve been seeing for Pennsylvania’s medical marijuana program wrote me a prescription for 120 codeine pills. The prescription called for no refills, but lasted for 10 months because I use the pills so rarely. I had no reason to expect he would not write it for me again.

The last appointment for the refill took literally 2 minutes. This is how the conversation went.

“How are you?” he asked.

“Fine. Thank you.”

“Anything new?” 

“I had a DBS implant a few months ago.” 

“Is it helping?” 

“No. Actually, it is making a major part of the pain worse.” 

“Well at least it is helping some part of the pain. What are you here for today? 

“My codeine prescription.” 

“Okay. Bye.” 

I assumed everything was fine and he would renew the same prescription.  

Since you no longer get a written script that you can read and carry, I was astounded when I got to the pharmacy to pick up the prescription and saw the bottle held only 10 codeine pills. And the prescription was for only 2 months. The doctor didn’t say a word about changing the prescription. 

I called his office. “I don't understand. He didn't say anything to me about reducing the amount. He didn't ask me how and when I take it. Yes, I told the nurse I take maybe one a week, but he never gave me a chance to explain why.”   

The nurse replied: “Well this is what he wrote for. And you will have to come back every two months for another prescription.” 

I have no problem with a doctor deciding it is time to try and reduce a medication, unless it is without explanation or discussion. This seems to be one aspect of the opioid crisis that seems to be ignored.  

I was seeing him once a year to meet the requirements for the medical marijuana program. Now, suddenly I need to come in once every two months for my codeine prescription. No explanation. No discussion. 

We blame the CDC, we blame the FDA and we blame the DEA. But we rarely blame the doctors for these arbitrary decisions.

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.

How to Survive Self-Isolation From Coronavirus

By Madora Pennington, PNN Columnist

Like much of the world, I am self-isolating to slow down the spread of the coronavirus. As a medically fragile person, I am afraid. My immunity is poor. I get frequent lung infections and I get them fast, without warning. Would I get a bad case of Covid-19?

I can imagine my death in the ICU, without family, on a ventilator, under protective gear. It’s easy for me to reconcile myself to this possibility, even accept it. I was born with Ehlers-Danlos syndrome, which prevents the body from making proper collagen and causes a host of other health problems.

I am an expert at homebound isolation. I did it for many years, too sick and in too much pain to function. My only job was to survive another day of agony and not lose my mind. Seven years ago, experimental treatment overturned my life sentence of pain and I was freed from my prison of disability.

I sheepishly admit isolating myself from the coronavirus is a lot more fun. This time, I am not sick. Even better, I am not alone. We’re all in this together.

My old life was awful, but it was simple. I had a schedule with targets to accomplish, which may seem laughable to someone who has not experienced prolonged severe illness. Shower, water a plant, unload the dishwasher.

I awoke in the morning, feeling lucky if I got a good chunk of sleep, and resentful if I did not. My spine was so fragile, the pain of laying down on my bed led to torturous spasms. I took morphine, Vicodin and carisoprodol in hopes of falling asleep before the pain hit and hoping to stay asleep after it did. The drugs worked about half the time.

My husband was careful not to wake me as he got ready for work. Up alone, swimming slowly through the thick liquid of my morphine hangover, I faced my favorite part of the day: the bitter warmth of coffee and a view of the city.

In my old life, I lived for simple pleasures because that was all I had. Food was one of them. Cooking dinner every night. Brunches on the weekend. I felt deep appreciation for the times when my pain or my brain fog wasn’t so bad, the times when I had a little energy. I dreamed that one day I might get better.

This was before Facebook, before podcasts, before medical information was freely available on the internet. Life was lonely then, but we didn’t know anything else. We kept my struggles private. No one except my doctor knew how sick I was. That gave me a sense of dignity, as a genetic disorder is so difficult to explain. Better not to, I thought. Besides, the hopelessness brings other people down, and that’s just impolite.

We lived in a one-bedroom apartment because I didn’t have the strength to get around anything bigger. I made the bed. I took walks every day. I fought to take care of as many of the household chores as I could. There was something monastic, perhaps even spiritual about my old life, a life where I spent most of my time alone.

When I got better and exited my sickbed, my life became unbearably complicated. Drug withdrawal, integration into the world, working and building a life. I was, I shamefully admit, deeply depressed. Adjustment Disorder is an emotional disturbance one goes through while adapting to the stress of significant life changes.

Stay On a Schedule

It’s been an easy transition to coronavirus self-isolation. I remember what worked from my old homebound life. Be on a schedule. Every day do this, and then that. Shifting from one task to another makes the day seem fuller. I like to lift some weights when I get stuck writing. Or maybe scrub the kitchen sink. Jump up and fold the laundry. Reorganize something, even if it’s just one drawer, for a quick sense of satisfaction.

Commit to regular meals, as opposed to all day snacking, so you won’t go back to work with clothes that don’t fit. Get sunlight on your face, as early in the day as possible. I hope you have trees or grass or sky to enjoy. They positively affect mood.

Make your bed and stay out of your bedroom. Sleep is a conditioned response. If you lay in bed while reading or watching TV, you send your brain confusing signals about when sleep time is supposed to be. Bedtime rituals help get sleep hormones flowing. Follow the same pattern every night.

Talk on the phone or even better FaceTime or Skype with friends so your brain can have the satisfaction of mirroring and the stimulation of responding to another human’s emotions. Accept your humanness, that you don’t have much control over your life and never did.

There is so much stimulating content now, from streaming services to podcasts, Kindle and audiobooks, ways to feel part of humanity and not so alone. Type your thoughts and feelings into a journal to help process and keep them moving.

My coffee ritual is still my favorite part of the day. It’s reliable and always there for me. I stocked up on great coffee, anticipating society shutting down, along with spam and popcorn, cold medicines and laundry detergent.

You can go outside for a walk, if not many people are around. Walking is relaxing. Gently swinging your arms as you go relieves back pain. My husband and I strap on weights and walk the neighborhood. We wave to our neighbors, most of whom are also living homebound isolation. We stand far apart as we chat.

“Let me know if you need anything,” I say. “I’ll disinfect it and hurl it over to your yard.” They agree to do the same.

Madora Pennington writes about Ehlers-Danlos and life after disability at LessFlexible.com. Her work has also been featured in the Los Angeles Times.

The Other Opioid Crisis: Patient Abandonment and Denial of Treatment

By Georgia Carroll, Guest Columnist 

I am a patient advocate and pain sufferer. I have the usual pains associated with rheumatoid arthritis, a bad knee and a few bulging lumbar discs. But my personal story is nothing compared to what most of the patients I work with are going through. 

I represent only a small fraction of the tens of millions of patients across the U.S. who have been abandoned by their doctors and denied treatment for the pain caused by diseases, injuries and mental health conditions. They are the unintended victims of efforts to curb opioid overdose deaths, even though studies show less than 2% of overdoses involve prescription opiates written for the deceased.  

Leaving these patients without medical care is inhumane and only exacerbates the opioid crisis, forcing some to turn to the street for relief. The victims of this abuse have been crying out for help since before 2013 and nothing has been done. They have been left to suffer, deteriorate and die. Lack of action to protect these patients has elevated the opioid crisis to a self-fulfilling phenomenon.  

Frankly, I was ignorant of how bad the situation was until a few months ago, when our doctor was arrested. For the last five years, he and I have been focused on teaching patients to integrate alternative therapies into their treatment regimens to help them reduce opioid dosages and frequencies.   

Now it is in my backyard and we are the victims, because no one gave a damn about 50 million suffering souls.

We are not drug addicts looking for the next high. We are medical patients who need doctors to responsibly prescribe the opiates we need for relief.

GEORGIA CARROLL

None of the legislation passed in recent years does anything to protect doctors from ill-conceived prosecution or their patients from being abandoned. The Department of Justice, DEA and local law enforcement have not been able to effectively diminish the availability of street drugs, much less stop their distribution. So they misinterpret and pervert the CDC opioid guideline to make their own rules for investigation and prosecution of the “low hanging fruit" of prescribers diligently treating their patients.

Physician intimidation is unacceptable. Patient abandonment is unacceptable.  

A case in point: The doctor of most of the patients for whom I advocate was arrested and the clinic closed without warning last November. The staff were threatened and intimidated, and medical records and computers confiscated, including the external hard drive backup.  In a flash, the doors were locked and 7,000 patients were abandoned with no recourse and no source for prescription refills, even blood pressure and insulin, much less chronic pain, panic attacks or depression. 

It took 10 days for the local district attorney to return the backup drive for patient records. It was blank, completely scrubbed.  We asked the DA to make medical records available to the patients so they could engage new physicians. They refused. Not their responsibility. "Clinic should have had backup," we were told. 

On day 73, after many letters from patients and doctors requesting the files and two street demonstrations, they finally agreed to download individual patient's records to a disc, on request, to be picked up at the DA's office in person or by a representative. 

Doctors and medical facilities across the country are refusing to write prescriptions for opiates to anyone, for fear of suffering a similar fate.  Instead, they are pushing patients to expensive and repetitive injections or surgery.  

Our doctor has been "flagged" by other local doctors, who refuse to even see a patient with his name on the medical files or prescription, even though he is highly respected by most of them. Call it "Not Me Next Syndrome."

The hundreds of patients I work with have now been without effective pain and mental health disorder medications for over 120 days, with no relief in sight.  They have been through the agony of withdrawals unassisted. What recourse do they have?  Continued debilitating suffering, accelerated physical and mental health decline, street drugs and the ultimate relief of suicide.  

These are the calls I receive almost daily. How would you advise them?  How would you manage your symptoms or those of a loved one?  How would you cope?  

Several states have begun to introduce bills to protect doctors from prosecution for doing their job and patients from being cut off cold turkey from their prescribed opiates. But these individual state efforts are inadequate given the number of patients across the country already affected. Patient abandonment and denial of care is now a national public health epidemic and demands immediate, emergency action. 

Georgia Carroll lives in Texas.

Pain News Network invites other readers to share their stories with us. Send them to:  editor@PainNewsNetwork.org. 

Being Taken Off Methadone Is Inhumane

By Wendy Cooper, Guest Columnist

I am a pain patient and diabetic entering my second week of detox.  My doctor will no longer prescribe methadone because he’s afraid of being targeted by the DEA for not following the “voluntary” CDC guideline.  He said they are putting doctors in prison by the hundreds and it’s just no longer worth the risk. 

I was on methadone for years.  I am also a gastric bypass patient, so I will not be able to take any type of NSAID (non-steroidal anti-inflammatory drug) for pain. 

When my doctor first suggested methadone I was totally confused.  I told him, “But wait, that’s for drug addicts.”  Well it is, but it’s also very effective for pain control.  After taking it for a month I was so happy.  It totally handled my pain and I didn’t have all of the other side effects, like making me sleepy and lethargic.  My mind was clear. I had my life back.  Yes, for many methadone works.  Sadly, it used to work for me, too.  

I am now back on insulin every day due to the pain, after having been off of insulin for years. Methadone did that.  It started the ball rolling in a positive direction. I was able to exercise more and take care of my family, because the pain relief helped get my diabetes under control. Not anymore. 

Supposedly the danger is because methadone, which has been around for over 50 years, has an effect on the respiratory system.  Well, this is true of many medications if they are not taken correctly.  If I take too much of my insulin, it will have an effect on my respiratory system too — as in me not breathing at all because I will be dead. 

Tons of medications have dangerous side effects if not taken properly.  What used to happen is you would weigh the benefits and the risks with your physician and then the patient would make an informed decision. 

WENDY COOPER

Why does the government have the right to take away medication that has changed my life for the better?  Why am I being treated like a child by assuming I will not take my medication correctly?  I can’t think of any valid reason for this except MONEY.  Methadone is $35 per month, while buprenorphine (Suboxone) is close to $300. 

Buprenorphine is not a good fit for pain patients.  We are much more likely to go to the emergency room for an acute event than non-pain patients.  What will they give us for pain? 

It’s my understanding that pain medications are complicated when you are facing surgeries while on buprenorphine.  I have four surgeries scheduled this year.  Am I supposed to wean myself every time I get ready for one of my surgeries? 

I always felt safer from any type of addiction issue because methadone took away the “feel good” effects of Percocet.  If I hurt myself, I could take a Percocet and it would help with the additional pain. 

I don’t have an addiction problem, but like most pain patients I am concerned about developing one. I’ve always felt it is my responsibility to take precautions and govern myself with my own guidelines.  Well, that benefit is gone.  I don’t want to live anymore. This is inhumane. 

Wendy Cooper lives in Florida.

Pain News Network invites other readers to share their stories with us. Send them to:  editor@PainNewsNetwork.org. 

Canada’s Chronic Pain Task Force Surveying Patients

By Marvin Ross, Guest Columnist 

In typical government fashion, the Canadian Chronic Pain Task Force continues to delay taking a stand on the plight of pain patients by initiating a new survey, while still blaming doctors and patients for the opioid crisis. 

The Task Force was established last year to help Health Canada better understand the needs of chronic pain patients. Their preliminary report in June found that anxiety and fear about opioids were causing pain to go untreated:

“Some Canadians have been unable to access opioid medications when needed for pain and function. Others have faced undue barriers to obtaining or filling their opioid prescriptions, and some have had their opioid dose abruptly lowered or discontinued. This has resulted in unnecessary pain and suffering, and has led some Canadians to obtain illegal drugs to treat their pain. We must do more to strike the right balance – to promote opioid prescribing practices that balance the benefits and risks of these medications based on the individual needs of each patient.”

Those initial findings were consistent with the results of a survey of over 700 pain patients conducted by the Chronic Pain Association of Canada (CPAC). That survey found that nearly half of Canadian patients had their pain medication reduced, many were in much greater pain, had severely diminished quality of life, lost doctors or had poor relations with them, attempted suicide or turned to street drugs for help.

At that point, the Task Force response should have been to make recommendations to reverse those negative impacts on patients. Two evaluations that replicate each other should be sufficient to take action to relieve the suffering caused by Canada’s 2017 opioid prescribing guideline.

But that is apparently asking too much as they've decided to do another survey through invitations to their online questionnaire. These are the key questions: 

• What challenges and barriers to understanding, preventing, or managing pain exist in your community and in Canada?  

• What needs to be done to respond to these challenges and barriers? 

• What is working to address pain in your community and in Canada? Please provide specific examples of practices and/or activities. 

• What is it about these practices/activities that makes them successful?  

• What should be the 3 top priorities for research in pain from your point of view?  

• What would help to better integrate research and new knowledge into education and training, policy, clinical practice, and everyday life?  

• What other strategies would help us to better understand, prevent, and/or manage pain in Canada?

Well, the main barrier to managing pain is the adherence by doctors to the prescribing guideline and their fear of losing their medical licenses if they don’t. Nothing will restore functioning to those impacted without rescinding that. The rest of the questions are inane. 

Where Is the Evidence?

As I pointed out in an earlier PNN article, Health Canada implemented the guideline based on weak evidence that the increase in opioid deaths result from inappropriate prescribing by doctors and misuse by patients. PNN columnist Ann Marie Gaudon attempted to obtain the research that Health Canada used to justify their claims and it was like pulling teeth, as you’ll see in this phone call. 

When the research was finally obtained, it didn’t prove a link between prescribing and overdoses. When CPAC sent them a critique of their studies, Health Canada replied that they have much more evidence, but then ignored requests for copies. CPAC has submitted a Freedom of Information request and is waiting for a response. 

Health Canada and the Chronic Pain Task Force continue to base their work on the many myths and misperceptions associated with opioid prescribing, which were debunked in a review recently published in Pain Management Nursing.  

A policy based on faulty logic to solve a problem (addiction and opioid overdoses) caused a new problem by condemning innocent people to unnecessary pain and suffering. Meanwhile, the original problem only grows worse. It is time to go back to the drawing board and accept what every Sociology 101 student knows. There are unintended consequences. Until that happens, nothing will be improved for anyone.   

But then, to make matters worse, this week Health Canada announced nearly $3 million in funding “to help people living with chronic pain.” Most of the money will apparently be spent on treating and preventing addiction, not treating pain. Saskatchewan will get $1.7 million from the Substance Use and Addictions Program and Alberta will get $1.2 million to “improve care delivery including opioid prescribing practices.” 

Health Canada does not seem to be able to distinguish between people with chronic pain and those with substance abuse problems. They are not the same and it is insulting to combine them. It is time that Health Canada learned to distinguish between dependence and addiction. 

Marvin Ross is a medical writer and publisher in Dundas, Ontario.

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.

Be Strong and Proud on Rare Disease Day

By Roger Chriss, PNN Columnist

This coming Saturday, February 29 is Rare Disease Day worldwide. The day recognizes thousands of rare diseases and disorders that together impact millions of people worldwide, both patients and their caregivers.

The goal of the day is to raise the profile of the rare disease community and to spread the word: “Rare is many, rare is strong and rare is proud!”  

According to the National Organization of Rare Disorders (NORD), there are over 7,000 rare diseases that are chronic, progressive, degenerative, disabling and frequently life threatening. Many rare diseases are familiar to chronic pain patients, from Trigeminal Neuralgia and Chiari Malformations to Porphyria and Ehlers-Danlos syndrome.

A disease is considered rare in the U.S. when it affects fewer than 200,000 people, while in Europe a disease is rare if it affects fewer than 1 in 2,000 people.

Because there are so many disorders, a total of 300 million people worldwide are thought to be affected by rare diseases. And though each disease is unique, many share common features like chronic pain and limited mobility, and require complex medical care.

Events are planned throughout the week leading up to February 29. NORD is hosting a variety of events, including a gathering at the International Spy Museum in Washington, DC on Saturday.

The FDA held a public meeting on Monday to update stakeholders in the rare disease community on the agency’s efforts to improve treatment for rare diseases. That includes a new request for applications to its Orphan Products Grant Program, which funds clinical trials of so-called “orphan” drugs that could potentially be used to treat rare diseases.

The National Institutes of Health is coordinating panel discussions on Friday, February 28 in Bethesda, MD to improve diagnosis and treatment, expand clinical trial resources, and increase awareness of rare diseases.

In all, NORD lists over 400 events in 106 countries marking Rare Disease Day, including conferences, research presentations, exhibits, walks, rallies and a variety of fundraisers.

Rare Disease Day started in 2008 with the first events held in Canada and Europe. The date February 29 was chosen because it is rare (Rare Disease Day is on February 28 in non-leap years).

Treatment Often Limited

Rare diseases and disorders often go undiagnosed and untreated. Due to their rarity, expertise, treatment and resources are limited for people living with a rare disease, who can also face discrimination at work and school.

Research on rare diseases can actually help improve understanding of more common disorders and lead to new treatments. For instance, Yale neuroscientist Dr. Stephen Waxman discovered the gene SCN9A and its role in two painful hereditary neuropathies. Treatments for these disorders may help people with many other forms of peripheral neuropathy, as Waxman explains in his book, “Chasing Men on Fire.”

Moreover, rare diseases are often misunderstood. They do not look like typical illness and may require unusual forms of medical care. So Rare Disease Day also represents a chance to raise awareness about the importance of research, specialist centers, and healthcare professionals who work on such disorders.

Although most rare diseases do not have a cure, they can all be managed and patient lives improved. Rare Disease Day is an opportunity to focus on promising research, improving patients’ lives, and promoting action.

Roger Chriss lives with Ehlers Danlos syndrome and is a proud member of the Ehlers-Danlos Society. Roger is a technical consultant in Washington state, where he specializes in mathematics and research.