People in Pain Feel More Stigmatized and Lonely

By Pat Anson, PNN Editor

A new global study of people living with pain found that nearly half feel stigmatized and regularly feel lonely. Women, people of color, and the LGBQ+ community are significantly more likely to feel they are treated differently, not believed, or discriminated against because of their pain.

The consumer health company Haleon conducted an online survey of over 18,000 people in 18 countries, including the United States, Canada, Australia and the UK. It’s the fifth time since 2014 the company has conducted such a survey, which forms the basis for the Haleon Pain Index (HPI), which is “designed to give a voice to those experiencing pain.”

The findings from this year’s survey show that attitudes about pain in a post-pandemic world have grown more judgmental and less tolerant, regardless of where people live. Worldwide, 42% of people in pain said they regularly experience loneliness; with serious loneliness felt by 38% of people in mainland China, 33% in Australia and 32% in the UK.

“Everyday pain is a health issue that can easily be dismissed or trivialized. Many don’t realize its effects can be much worse than the symptoms themselves,” said Linda Papadopoulos, PhD, a psychologist and consultant. “The result of loneliness and mental health impact caused by lack of empathy and being treated differently is only worsening. As a society, we need to improve empathy and understanding in a world that is continuing to harden to these issues.”.

The HPI found that people who already experience bias and discrimination are the most affected by hardening views on pain. 

• 58% of women in pain said they were treated differently, not believed or discriminated against, versus 49% of men. Stigmatization was highest among women in India (74%), Saudi Arabia (74%), Brazil (74%), and mainland China (61%). 

• 59% of people of color said they felt stigmatized because of their pain, versus 48% of white people. This trend is highest in Brazil (71%), Poland (64%), USA (64%), and the UK (60%) 

• 44% of people who identify as LGBQ+ fear that others will make assumptions about them and their pain, compared to 32% of heterosexuals. This trend is highest in India (61%), USA (54%), Canada (49%) and Australia (48%). 

The study also found a striking generational gap in the way people in pain are treated, with younger patients often struggling to make their pain known.

Worldwide, 70% of people in their late teens or 20’s (Gen Z) felt stigmatized because of their pain, compared to just 40% of Baby Boomers aged 60 or older. Levels of stigmatization against Gen Z were highest in India (80%), USA (79%) and UK (74%).

Even just talking about pain can be problematic for younger people. 45% of Gen Z respondents said pain was too much of a taboo for them to speak out, compared to 35% of Baby Boomers.   

“While pain is a universal human experience, resulting in loneliness and stigma for many, its impact varies considerably between social groups, with the most marginalized amongst the worst affected. Our ambition is to break down the barriers to achieving better everyday health for everyone – irrespective of age, race, ethnicity, gender, sexual orientation, disability and other factors,” said Lisa Jennings, Head of Haleon’s global over-the-counter products. 

Despite differences in experience, there is broad agreement among people on the need for a more personalized and compassionate view of pain. Over two-thirds of respondents (68%) said more empathy was needed to address bias and prejudice.

Notably, 69% wished that doctors and 62% wished that pharmacists were better trained on how individual pain is for different patients.

How are you treated by your pharmacist? If you are a pain patient in the United States, please take a few minutes to participate in PNN’s survey on drug shortages and opioid prescribing by clicking here.

Why We Need Connections

By Dr. Lynn Webster, PNN Columnist

On a recent "Hidden Brain" podcast, Shankar Vedantam interviewed former U.S. Surgeon General Dr. Vivek Murthy about the need for human connection.

Dr. Murthy is promoting his book, “Together: The Healing Power of Human Connection in a Sometimes Lonely World,” which is especially timely given the fact that so many people are currently experiencing social isolation.

I encourage everyone to listen to the podcast and, perhaps, to buy the book. Murthy comes across as a sensitive, intelligent physician who offers an empathetic perspective.

To state the obvious, the COVID-19 pandemic has created distance between most of us and isolation for many of us. To some degree, it has traumatized nearly all of us.

It is important to recognize many people will be seeking ways to heal from the experience. A desire to feel connected is primordial. To have a sense of belonging is on our hierarchy of basic needs. It is also important to healing.

Rachel’s Story

I want to share a short, true story to illustrate the power that connection plays in wellness and healing. 

Debra Hobbins was a nurse practitioner who worked with me in our clinic. She had a unique capacity to connect with patients and make them feel they were important. It was genuine; she was a compassionate and empathetic clinician. 

Debra and I had a patient, whom I will call "Rachel," who had developed an opioid addiction. After several years of fighting the addiction, Rachel tried to get help, but the barriers and rules created by treatment centers and the government prevented Rachel from seeking the care she needed. One day, Rachel found her way to our clinic, where Debra became her primary provider.

Since we were treating Rachel with Suboxone for an opioid addiction, I was included in Rachel’s treatment team. (This happened at a time before nurse practitioners could prescribe Suboxone for addiction.) However, it was Debra who took the lead role in offering a powerful sense of caring and connection for Rachel.

Debra was uniquely qualified to understand Rachel's pain, because she had lost her son to a heroin overdose many years earlier. She knew what Rachel needed to begin healing. Debra gave her what no one had given her before: understanding, compassion and nonjudgmental, unconditional love.

The connection Debra offered Rachel was essential to Rachel’s healing. But there are all sorts of support, and people in pain need various types of help at different times.

Religion and Spirituality Can Help Us Heal

Sometimes, people need help that no human can provide, and they seek healing and comfort from the divine or through spiritual practices.

Researchers are especially interested in how effective religion and spirituality are in helping people deal with physical or emotional pain. Time and again, studies have shown a correlation between a religious or spiritual orientation and improvements in pain or health.

In a 2011 study of 60 depressed patients, researchers found that “hopelessness and suicidal intent correlated negatively with the level of religiosity." In other words, people in pain who are religious or spiritual tend to feel better than those without belief. They are more likely to have "better psychological well-being."

Seeking Connections During the Pandemic

For many of us, our sense of isolation has been heightened by the pandemic. Some people who typically feel connected to others may have temporarily lost the ability to participate in activities that provided them with a sense of belonging, such as going to church or the gym.

There are alternatives, such as using Zoom to visit with friends and family, but all forms of connection are not equal. Some options work better for some people than for others. Those who are lucky enough to be able to participate in video calls may find them inadequate. According to Psychology Today, the technology may leave some people feeling exhausted and depleted rather than satisfied.

Tapping into their faith or joining video conferences may help some people feel connected. But for others, that may barely scratch the surface of their loneliness.

As Murthy points out, a "dark thread of loneliness" can cause physical health problems, including drug abuse. Physical distancing may keep many of us safe from the coronavirus—but without human connections, the richness of life can be elusive.

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.

I’m Lonely. Are You Lonely Too?

By Ann Marie Gaudon, PNN Columnist

We are born for connection and being socially separated is bad for our physical and emotional health. From altering our immune systems to creating more inflammation to increasing the risk of heart disease and stroke, the health consequences of loneliness are significant.

Being a chronic pain patient can put you at even greater risk of being lonely. On the one hand, we know that social isolation is unhealthy, but on the other hand, we don’t have a choice as we must practice social distancing and self-isolation to protect ourselves and others from the coronavirus.

I’m lonely, you’re lonely – now what?

Don’t Do This

Do not attempt to run from your loneliness by zoning out for hours on end with Netflix or video games, consuming too much alcohol or other substances, or over-eating.  Trying to escape loneliness that way might give you some reprieve in the short-term, but those strategies will suck the life out of you in the long-term.

Trying to avoid or suppress feelings actually has a rebound effect in that they become stronger and more invasive in our lives. Avoidance is not a benign strategy and can have catastrophic results.

Do This Instead

Pay attention on purpose. Slow down, notice and name it. For example, “I am feeling lonely. It feels heavy and sluggish in my heart.”

Can you let this feeling be there just as it is, without judging or evaluating it? Without reacting to it? Can you just slow down and let your body feel what it is feeling? Can you let go of the urge to do anything at all with this feeling of loneliness? This is a normal response to an abnormal situation and your body is wise to this, so let it be.

Make an intention. Ask yourself, “What will I do with this feeling of loneliness now? My mind sees this as something that makes me weaker, unlovable and sad. But I choose not to buy into this. I accept that this loneliness is mine. What will I do with it now that it is here?”

The way out of this suffering is to behave your way out of it. Changing your behaviour will change the way people interact with you and will also change the way you interact with yourself. Make an intention to change your behaviour while holding the loneliness lightly, as you might hold a butterfly on your hand.

Expand your experience. You’re not going to shrink away from your experience of loneliness, but rather learn from it. We hurt where we care. Loneliness tells us that we care deeply about relationships. If we didn’t, we wouldn’t feel anything at all.

You will learn that your experience cannot bring you to your knees or ruin your life. You will learn that you can go through hell on earth and still treat yourself in a non-judgmental, non-reactive way. You will learn to wrap yourself in the warmth of self-kindness – even in moments of loneliness – and expand out into life to be part of this world.

Stay Connected

If you are reading this, you already have at least one technology that you will use to move forward with a new meaning. How you take control over what you do have control over – your behaviour – will be up to you, so choose something that you value.

People all over this planet are getting creative with ways to connect with each other. Stay connected to those you love. Use your phone or software such as Skype or Zoom. Use whatever floats your boat, just remain consistently connected.

There’s a virtual world out there for everyone. You can access therapy, support groups, entertainment of all kinds, exercise of all kinds, and even stream from your local library. How about taking that online course right now that you’ve been putting off? The great thing is that you can connect with a resource anywhere in the world.

The take-away message is this: Feel what you feel and make an intention to change your behaviour. Expand your world even if has to be online right now. Talk with people, laugh with people and cry with people.

The point is to emotionally connect during these especially lonely times. Texting, emailing, speaking, video-conferencing – the sky's the limit. Change your behaviour and change your life. Self-isolation need never mean emotional isolation.

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.

One Is the Loneliest Number

By Ann Marie Gaudon, PNN Columnist

Part of what makes pain "painful" is the feeling of being misunderstood and the feeling of aloneness.

"Nothing is quite so isolating, as the knowledge that when one hurts, nobody else feels the pain,” Robert Murphy wrote in his memoir, “The Body Silent: The Different World of the Disabled.”

When you combine a sufferer who sees only pain with someone who can't see it at all, a barrier often springs between the two.  Pain causes this barrier because it inverts our typical perspective. No longer able to reach out to others for work or leisure, pain patients turn inward and life becomes about self-protection. Something is wrong inside of us, so we must tend to it and ensure it doesn't get any worse. This is an evolutionary response for survival; it’s instinctive and quite normal under these circumstances.

Once patients are constrained in their daily activities, a large part of their social world and the emotional health that depends on it can quickly deteriorate. Relationships are arguably the largest part of what makes life worth living.  In contemporary Western society, our self-confidence and identity arise from social interactions.

But as chronic pain sufferers’ lives become more restricted and limited, they frequently experience an erosion of their former self-image without the simultaneous development of a new one.

For example, I have heard: “I was a nurse, a mother, a wife, a friend, a daughter, and a sister, but now all of that is gone and I am alone in a cage with my pain.”

When isolated and in pain, our mind can become our worst enemy. The collapse of one’s social world can result in feelings of anxiety, emptiness, loneliness, anger, sadness, grief, guilt and low self-worth.

All of this psychological stress (aka “dirty pain”) is a response to your physical pain (aka “clean pain”).

Stress is a complex cascade of physical and biochemical responses to strong emotional stimuli. Emotions are electrical, chemical and hormonal discharges of the human nervous system. When not processed in a healthy manner, they can generate or increase pain and illness.

People can and do help themselves. Some join groups. If possible, join a walking group for exercise. If you don’t like walking, join another. The point is not so much what the group is doing, but rather that you are in a social situation.

Online forums are another way that people connect, especially if one is mainly housebound. Online communication can help you feel not so alone with your pain.

Maybe it’s possible for you to open up your home to low-maintenance company. Host a popcorn and movie night, or it could be cards or board games. You do the choosing, including when it begins and ends. Start with a single and simple event to prevent over-exertion and see where it leads.

Remember, what’s important is that you are building and maintaining relationships. To the extent that it’s possible, stick with those who support you. This could mean family, friends or even a support group for your condition, which can be a platform to form meaningful relationships with people who understand you. By listening to each other, you both know that you are heard and that you are not alone.

Some folks make their pain more communicable and thus sharable through pictures, artwork or expressive writing. Oftentimes this helps to bring barriers down to help others understand how you are feeling. There are no rules, you choose your form of expression.

Finally, realize that it is not your fault that you live in a pained body. Adding self-blame to your list of challenges will only make things worse for yourself. Learn to ask for help when you need it. Asking for help is never a weakness but is an act of self-compassion. I work extensively with clients on self-compassion, most of whom are quite naïve about it. If beating yourself up were the way to better health, wouldn’t you be the healthiest person on the planet by now?

I also work with people to get realistic about their life and expectations. What can stay? What can go gracefully to make room for new ways of being?

People aren’t broken, they’re just stuck. It’s not always easy, but with new learning, adaptations and support, people also become unstuck.

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.