A Pained Life: Stop the Denial

By Carol Levy, PNN Columnist

For many of us, pain is sporadic. Sometimes we know exactly when it will be start or what will set it off. Other times, it may hit spontaneously.

When my trigeminal neuralgia pain started in 1976, it was constant, triggered and spontaneous. Now it can be triggered by any touch to the affected area. Or it can come out of the blue.

When I don’t have pain, it often lulls me into denial. I’ll think, “Hey, I'm okay!” Denial is one of my defense mechanisms. I don't have the pain right now, so I won't have it. 

And then, like a freight train bearing down on me, the pain hits. That's when the denial ends. Sometimes it takes only a few minutes to recover, sometimes much longer.

Denial of pain also comes from friends, colleagues or family. It often results in an argument or anger. Does that change their denial? Not often.

Is it worth the hurt and emotional pain when we try to change their minds, when we try to convince them of the reality of our pain? Again, not often.

Many of us have had medical professionals refuse to accept our pain. Years ago, I found this note in my neurologist's chart: “There are days like today when I believe in her pain.”

It wasn't his to believe in or not. If he chose not to believe me, then the remedy was simple. Fire me as a patient. It is not worth debating with a doctor about the existence of our pain.  

A big pain trigger for me is eye movement. Any eye usage causes pain. I can read, sometimes for as long as 20 minutes, before the pain starts yelling at me and I am forced to put the book away.  

Too many times I don't want to give in to the pain. Just one more paragraph, I’ll think, or at least a sentence. If I try to deny the pain and continue to read, it grows stronger, bigger, a green hulk of pain.  

Then I have no choice. I fling the book away and wait, sometimes for hours, for the pain to subside to a tolerable level. I could have stopped the pain. I could have taken control over it. All I had to do was accept that I can't read for as long as I want. But, like a food addict, the pleasure I get from reading overwhelms my common sense.

For those of us struggling to stop denying the pain when we know we should, the denial only adds to our battle. We call ourselves “survivors” or “victims.” Those are words of war.

For me, the war isn’t over. If and when I win, I'll stop the denial. 

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. 

Living with Chronic Pain: Acceptance or Denial?

By Ann Marie Gaudon, PNN Columnist

It’s commonly understood that chronic pain not only negatively influences our physical health, but also leads to changes in our sense of self, as well as how we experience the world around us.

An interesting Swedish study set out to explore these factors. Twenty people with long-standing musculoskeletal pain were involved. Each participant completed 20 “qualitative” interviews -- which means the questions were designed to lead to descriptive answers, not hard data such as numbers or graphs on a chart.

The opening question was asked like this: “Please describe your problems. I’m thinking of the problems that made you contact a physiotherapist?”

All of the questions were focused on the participant’s perception of his or her body and were open-ended enough to encourage them to provide a narrative of their lives. After the answers were collected and analyzed, four distinct typologies emerged.

Typology A: Surrendering to one’s fate

In this typology, subjects do not oppose their pained body. They accept that their pain cannot be eliminated, so why battle against it? They are aware of their limitations and adapted accordingly.

When you accept pain, you can still engage in more important (non-pain) aspects of life. The pained body becomes more integrated with life when the person trusts their ability to cope with the unpredictability of it. Listening to signals and adapting becomes the norm. One participant described it this way:

“No, I don’t rely on my body, because I never know when the pain will come… I always have to consider how to carry things through, what I am doing, why I do it… to prevent pain afterwards. It (the body) is with me and I am the one who decides”

Typology B: Accepting by an active process of change

In contrast to Typology A, in this typology people accept pain through deliberate and active coping strategies. Attitude is adapted in the face of the new reality of living with pain, and it becomes possible to undergo positive change and go on to a richer life.

The precondition for this change is believing that the body and soul are closely linked. Participants describe a previous total lack of body awareness that changes to a life where the body becomes a wise teacher. They look to the future with optimism, while realizing it will take great effort.

The integration of the aching body into life requires a trusting and hopeful cooperation between self and body; there is trust that the body will help even when in pain. The pain puts the body in the foreground. When pain is not being fought against, it enhances both body awareness and self-awareness. One description read like this:

“…growing consciousness is the only, the only way to take control of the pain.”

Typology C: Balancing between hope and resignation

Here researchers found that major changes in life brought on by constant pain put the subject into a state of ambivalence. There is a pendulum swing back and forth between accepting and rejecting the aching body. Hope sees a way forward, but time after time despair sets in.

Integrating the aching body into life becomes problematic and the relationship with the body seems unclear at best. The subject swings from listening to the body to avoiding it.

Accepting this burdened body is necessary to move forward, yet that change is not fully realized. Pain results in feelings of fear or worry. The cause of the pain is considered complex and the subject has a tendency to ignore warning signals.  An example of this:

“My pain started because I am too slender for cleaning work, I believe. This, I think, is how my pain all began but you go on and on and don’t listen to our body until it is too late.”

Typology D: Rejecting the body

In this typology, integrating the aching body into life is impossible and rejected. The word acceptance is considered an insult or a threat. The pain is impossible to accept. The aching body is an enemy, life is unfair and unsafe, and something worse may happen. The subject has no trust in the body and nothing helps.

Living in denial like this may be beneficial for overcoming a short-term crisis, yet the costs in the long run lead to an inability to cope. A quote from one participant:

“No, no, no, I won’t do it. No, I don’t know how my body will react in different situations… it is against me”

Clinical Implications

The results from this study indicate that chronic pain patients can be found along a broad spectrum from accepting to rejecting their aching bodies. Both body awareness and body reliance seemed to be important for acceptance to take place and for life to be manageable.

Reinforcing body awareness and reliance may be a possible way forward. Your body and life may not have played out how you had anticipated, but you can still adjust to life and living with a pained body.

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.

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.

Living in Denial About the Overdose Crisis

By Ann Marie Gaudon, Columnist

Most of us know that denial of reality exists, but why is this so? How can humans with the ability to consider, evaluate, analyze and resolve complex problems ignore the facts? Even when ignoring the truth might lead to disastrous results?

Conceived by Sigmund Freud as a defense mechanism (to “defend” us against that which we do not want to feel), denial has been a concept for many decades. To over-simplify the premise, it’s a belief that something is either true or false when the facts say otherwise. Why would we do this? It’s because people experience a broad range of powerful emotions and intentions, such as greed, pride, revenge, fear, desire and a need for status – just to name a few. The have a strong influence over our ability to interpret facts.

When the Canadian government introduced the 2017 Canadian Guideline for Opioid Therapy, the creators were in denial. They ignored medical facts about chronic pain and turned pain sufferers into sacrificial lambs for people abusing illicit opioids. Patients and doctors tried to tell the truth but were not allowed a seat at the table with the so-called “experts.”

Chronic pain patients have never, ever, had their pain needs met and now they fare much worse. They are in more pain and experience more death and disability due to forced tapering and suicide.

Deniers yell loud and long that opioid pain medications are not effective, dangerous, addictive and will kill you in the end. Except that the evidence does not support that. Those with the worst pain have necessarily taken opioid medications to cope. It was their strongest weapon and were usually taken without danger, addiction or death. Opioids gave them effective pain relief that helped them regain function in everyday life.  Deniers will neither believe nor admit to this.

Let’s take a look at some of the strong influences which spur deniers to ignore the facts. We can see through many interviews and articles that McMaster University’s chosen group for creating the Canadian guideline enjoyed inflated reputations as “progressive thought leaders” who were “experts in pain management.” Add in the prestige and desire for status that comes from speaking engagements, media interviews, and more committees to participate in. Imagine the pride and prestige from conducting more studies (despite knowing little about the study area), and let’s not forget the enormous sums of monies paid to them by our government.

Greed, desire and a need for status can easily veto reality. So can feelings of morality and “doing the right thing” for people, while living under the fictitious perception that they are making positive inroads into addiction and overdose deaths while saving chronic pain patients from themselves.

In the real world, what has been the impact of the guideline on addiction? Nothing.

What has been the impact on pain patients? Devastation.

Most people can’t seem to figure out why the very same dreadful outcomes keep happening until they are knee-deep in it. Health Canada said this week that over 4,000 Canadians died from drug overdoses in 2017, the most ever. Most of those deaths – 72 percent – were caused by illicit fentanyl, not prescription pain medication.

Jordan Westfall, President of the Canadian Association of People Who Use Drugs, was bang on when he wrote in the Huffington Post that “it should shame this country to no end that our federal government is still afraid to see this epidemic for what it is in reality… What’s killing people is drug overdose and an apathetic government.”

May I add that what has never been killing people are chronic pain patients and their medications. Remorse and shame are powerful motivators for living in denial. Deniers continue to believe that punishing patients will somehow decrease the alarming rate of overdose deaths.

Chronic pain patients have always known the emperor has no clothes. It is a fact that all over North America prescriptions for opioids continue to go down, while overdose deaths continue to go up.  Does this suggest a statistically significant relationship between prescription analgesics and overdose deaths?  Yet the deniers continue with the same old agenda, despite the disastrous situation they have created.

There is an annoying little fact about denial. It doesn’t work in the long-term. Reality always wins out and when that happens, the next step for the deniers will be to place misdirected blame onto someone else. Count on it. It’s already happening. Doctors put the blame on the guideline’s creators and the creators reply, “No, no, no…it’s the doctors who have misunderstood the guideline.”

Here’s a message to the Canadian government and to the plethora of advisory groups, committees, response teams, et cetera and ad nauseam that are funded with taxpayers’ money to deny the facts:

When you are consistently creating the same disastrous outcome over and over again, you are in denial. And if this shameful situation continues, it will only lead to more suffering and deaths.

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.