A Pained Life: Me and My Shadow

By Carol Levy, PNN Columnist

Pain shadows a lot of life's experiences. If I'm pregnant, at some point I'll think about childbirth – and the horrendous pain of labor. But to torture a musical metaphor, at the end of the shadow, the sun will come out tomorrow. At the end of labor, the pain stops, and the happiness of a newborn baby is the result.

If I'm going to have surgery, I may think about the pain that comes after surgery and during recuperation. But I can also be buoyed by the knowledge that at the end of my recovery, the pain of what brought me to a surgeon in the first place and the pain of getting over the operation will be gone.

When I have an appointment with a dentist, just thinking about the appointment is painful for me. The visit means triggering my trigeminal neuralgia facial pain as soon as they ask me to “open wide.”

There will be no sun, just shadows. The appointment will end, but the pain that was triggered will last for hours. I can’t run away from it.

Another dental appointment will have to be made, hopefully later rather than sooner, and I will be forced to invite the pain back again.

Is the pain awful when it is triggered or is it the fear of it being triggered that sets it off? Some doctors will say it is psychological and that fear is causing the pain, not the actual actions that trigger it.

Is this true? Sometimes I like to think it is. After all, if it is fear, then I can try and work on it in my mind, to release myself from its prison. If it is the pain, and when or how they will set it off, I cannot talk myself out of it.

There is no way to negate the reality of the pain or its triggers. The sun does not come out for us and the shadow of fear is not a metaphor. Pain is our reality. The fear of setting it off can be as dark as the pain itself.

That’s something that we and our doctors, colleagues, family and friends need to understand and accept as the truth of our life experience. And the reason we are often unable to participate in life.

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 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.

6 Emotional Stages of Chronic Pain

By Ann Marie Gaudon, PNN Columnist

Emotions are part of our life experience and influence how we cope with challenging situations such as chronic pain.

Emotional responses to pain are not “bad” or “negative” because they are a natural response to life events. For example, depression is often seen as a sign of poor health, but it can also be a way of conserving bodily energy.

Emotions are never a sign of weakness. Emotions are adaptive responses which have helped us survive as a species.

Did you know there are normal emotional stages of injury and pain? Not everyone goes through every stage and it is not a linear process. Sometimes we bounce from stage to stage in no particular order.

Let’s look at these 6 emotional stages of chronic pain:

Denial

Denial is when we refuse to acknowledge how we feel and try to conceal the problem. When we’re in this stage our thoughts are likely: “It’s probably nothing serious” or “It will pass soon enough.”

Typical denial behaviour would be to ignore the pain, keep going as though you’re not in pain, failure to seek medical attention, and not following medical advice. Basically, you’re acting like nothing is going on in your body.

Denial is also culturally reinforced by beliefs that we should “suck it up, don’t complain and keep working.”

Fear and Anxiety

We feel fear and anxiety when the reality of something wrong hits home. You will likely be thinking quite repetitively during this stage. Typical thoughts would be: “Something is very wrong” or “What’s going to happen to me?” 

In this stage, your behaviour might be to rest and withdraw or avoid activities to protect yourself from further injury or pain. You will find yourself preoccupied with a lot of worry. You will likely begin to scan your environment and your body for threats to either, and it will be hard to commit to work or play.

Depression

Depression is the most common response to chronic pain and tends to come after fear and anxiety. Your thoughts would be normal in this stage if they were: “What’s the use?” or “Why bother with anything anymore?”

Realize none of this is enjoyable or desired; it is a normal response to chronic pain. Your behaviour would be to reduce participation in normal physical activities – even the enjoyable ones.  Social withdrawal would continue as a protective adaptation and you might experience problems with sleep.

Depression can impair your sense of self and you may grieve the loss of your identity. If you’re not an employee and parent anymore, then who are you? It is normal to withdraw in depression when your world shrinks in size.

Anger

Another emotional stage, and one I am quite familiar with, is anger. This defensive behaviour is the “fight” in the fight-flight-freeze response. It energizes you to resist the problems that come with chronic pain, and to ward off danger and restore safety. Normal angry thoughts about your pain would be: “It’s not fair” or “Why me?”

Behaviours in this stage can sometimes be troublesome, as they may become impulsive (acting or speaking quickly without thinking it through) or compulsive (repetitive behaviour not serving a purpose). You may overreact to smaller things and blow up at others. You might also engage in risky behaviour such as abusing alcohol or other substances to try to numb yourself.

The key is to express your anger in a healthy manner and hopefully transform it into affirmative action.  This is where you find the message in your anger and put it to work for you. I put my anger to work for me as I advocate for chronic pain patients on a regular basis.

Shame

Shame is not to be confused with guilt. Guilt says, “I’ve done something bad” while shame says, “I am bad.” Shame comes from how we see ourselves as damaged goods and can lead to feelings of self-loathing and disgust. You might think: “I’m worthless” or “I’m a complete failure.”

As a therapist, I find this to be a particularly powerful and difficult stage for clients, as shame often takes up all the space in the room. Behaviours in this stage would be continued social withdrawal, a decrease in assertiveness and self-confidence, and possibly self-destructive behaviours such as abusing alcohol or drugs.

Acceptance

The final emotional stage of coping with chronic pain is acceptance. Some patients reach this stage fairly quickly and others never reach it.

Let me be crystal clear about acceptance: It does not mean that you want this pain or that you like this pain and gladly accept it. Absolutely not. What it does mean is that you accept yourself without judgment, you live in the present moment, and you accept what is. Your thoughts will be along these lines: “This is not my fault” or “I can and will cope with this.”

Behaviours begin to change in this stage. You will be less focused on the past and have more realistic expectations of yourself. You will maintain appropriate levels of physical activity, use medications appropriately, reduce your emotional stress, and begin to experience feelings of peace rather than constantly beating yourself up.

Acceptance does not mean that you no longer feel any of the other emotions.  You may still experience feelings of denial, fear and anxiety, depression, anger and shame, but they will be less often and with less intensity.

Acceptance -- which includes hefty doses of self-compassion -- does not cure anyone’s physical pain, but it does facilitate better coping and reduced emotional stress. You do not accept pain because you want it or like it, but because it is here, you have it, and you respond to it in a kinder, gentler way.

The purpose of acceptance is to engage in activities that you feel have value. Within this purpose, acceptance becomes relevant and necessary. As a consequence, there is often less time spent struggling against and trying to avoid pain -- time freed up to engage in more valued pursuits.

It may take some time and support to acquire this tool, but once you have, it’s yours for life. Double entendre fully intended.

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 33 years and works part-time as her health allows. For more information about Ann Marie's counseling services, visit 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.