Randall H. Duckett

16. Cruel Loneliness

A survey offers a disturbing portrait of
what it’s like to live with pain​

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Here’s the thing you aren’t told about living in chronic pain: It’s lonely as hell.

My pain is isolating. It’s like being trapped in solitary in a prison with only my own thoughts for company. There’s an eerie sense of being cut off from the general population, all by myself. No matter how hard I try to explain what my experience is like to others, there’s still a fundamental disconnect.

In this sense, I am like the vast majority of chronic pain sufferers, according to a 2025 survey by the U.S. Pain Foundation (see Sources of Solace).

Among other results, the survey of nearly 2,100 self-selected people living with chronic pain found that their pain is deeply lonely, long-lived, misunderstood, and stigmatized. As depressing as that sounds, understanding pain sufferers’ struggles better is a key to helping them find relief.

Living in isolation

Pain isolates sufferers socially and robs them of the relationships that make life so rich, including love and romance. Notice the huge majority of sufferers who reported similar experiences in the survey:

• 90% missed social events in the past year due to their pain.

• 79% said their pain makes it difficult to spend time with family or friends.

• 73% felt socially isolated or misunderstood.

• 70% said their romantic relationships were significantly impacted.

• 65% reported difficulty communicating with loved ones about their pain.

• Only 28% said their family and friends are very supportive.

Nicole Hemmenway, the CEO of the U.S. Pain Foundation, tells me: 

Chronic pain doesn’t just affect the body  — it can quietly unravel our relationships, our routines, even our sense of self. What this survey confirms  —  and what we hear every day  — is that isolation itself becomes its own kind of pain: quiet, devastating, and deeply real. It means missing out on milestones, being misunderstood by loved ones, and feeling invisible and left behind in a world that keeps moving forward.

Long-lived pain

By definition, chronic pain is enduring, but it’s eye-opening how long sufferers deal with it. Once pain becomes chronic, it’s notoriously difficult to remedy.

The survey, titled Behind the Numbers: What It Really Means to Live With Chronic Pain and released to coincide with Pain Awareness Month in September 2025, showed that about nine out of 10 sufferers have lived with pain for more than five years. Worse yet, almost one-third have lived in pain for more than a quarter of a century.

It also takes a long time for sufferers to get a diagnosis. Only 15% were diagnosed within six months of their pain’s beginning. A third waited one to five years, and 29% got a diagnosis after five years. Others never get a reason for their pain.

Finding a provider to help is difficult: “21% had seen more than 10 providers in search of answers. Another 32% had seen between 6 and 10 providers,” according to the report. It goes on to say:

Younger respondents  —  especially those under 35 —  were more likely to report waiting three or more years for a diagnosis. This suggests systemic dismissal of younger people’s pain, lack of access to specialists early on, or the bias that pain in youth or young adulthood is ‘psychosomatic’ or temporary.

Adults who were 55 and older were more likely to receive a diagnosis within a year of symptom onset, possibly reflecting more-frequent health care interactions, higher likelihood of belief from providers, or more obvious physical correlations with aging.

Even after years of seeking answers, many individuals continue to live with unexplained symptoms and a sense that something important has been overlooked. In fact, 38% of respondents  —   even those with a diagnosis  —   or their providers believe they still have undiagnosed conditions.

The implication is that large swaths of Americans endure significant pain for a remarkably long time. Despite the painful statistics, pain is relatively low on the national public health agenda.

Pain is complicated

One of the biggest challenges of coping with chronic pain is how complex it is. It often goes with other comorbidities (other conditions).

“Respondents reported an average of 10 distinct diagnoses per person. Conditions like back pain (64%), arthritis (53%), neuropathic or nerve pain (48%), osteoarthritis (42%), and fibromyalgia (37%) were among the most reported,” said the survey results.

Further, it’s hard to pin down pain. According to the report, a significant majority of sufferers have overlapping kinds of pain:

• 84% of those with inflammatory pain also had musculoskeletal pain.

• 83% of those with nociceptive (due to injury or tissue damage) pain also had neuropathic pain.

• 79% of those with musculoskeletal pain also had neuropathic pain.

“These patterns highlight the inadequacy of ‘one-size-fits-all’ care. Pain is not just felt in the nerves, joints, or tissues —  it often spans all of these,” concluded the report.

Mental toll

Pain also takes an intense emotional toll on sufferers. Nearly three-quarters reported a significant impact on their mental and emotional health. A similar percentage felt socially isolated or misunderstood. Exactly half said they lacked emotional support from others.

Chronic pain has a big impact on sufferers, severely limiting their lives:

• 93% said pain significantly limited physical activity or hobbies.

• 79% struggled with household chores.

• 76% reported serious sleep disruption.

• 76% missed work or school regularly.

• 74% said pain significantly interfered with employment or job performance.

• 61% were unable to care for children or dependents due to pain.

Pain hits some groups particularly hard:

Women often reported higher social and emotional impact across all ages in many categories. Nonbinary or gender-diverse respondents reported the greatest emotional burden —83% said their mental health was significantly affected. Adults between the ages of 35 and 64 experienced the most disruption to employment, relationships, and household chores. Adults who were 50 and older continued to face physical limitations, sleep disruptions, and challenges with household chores.

The stigma of pain

I’ve written the stigma of pain (see chapter 33). The report reinforces that.

• 79% believe that stigma around chronic pain and its treatments is a major barrier to improving pain-related policies.

• 61% of sufferers have experienced stigmatization from providers or pharmacies related to opioid prescriptions.

• 21% are concerned about using medical cannabis or CBD for pain management because of associated stigma.

“Stigma was an all-too-common experience for respondents,” the report’s authors wrote. “Whether related to their condition or the treatments they use, individuals experienced stigma from a range of sources: friends, employers, family members, and even health care providers.”

Stigma caused sufferers to be called “drug seeking,” “difficult,” and “dramatic.” 

“Such judgment reinforces isolation, discouraging individuals from advocating for the care they need or openly sharing their realities,” the report said. The survey results further showed:

[M]ore care did not always mean better care. Among those with frequent appointments, 21% still felt ‘not at all understood’ by their providers, a similar rate as those seeing the doctor less frequently —   highlighting persistent gaps in provider empathy, communication, and trust. Only 12% felt their providers fully understood their pain; 60% said others (medical and non-medical) don’t understand at all. Only 3% felt very well understood.

The bottom line

This all sounds very depressing, and as a pain sufferer I can testify to how chronic pain can make one feel down. No rose-tinted glasses can put a cheery face on pain.

But we sufferers are not without hope. The intent of the survey is to show the rest of the world the reality of chronic pain, not sugarcoat it. Only by spreading the truth about pain —  to the public and policymakers  — can things start to change.

Comments U.S. Pain Foundation CEO Nicole Hemmenway:

The findings are sobering  — and they should be. But within them is a powerful call to action that can no longer be ignored. What gives me hope is the strength and honesty of the respondents. By speaking up, they’re breaking through the silence that has surrounded chronic pain for too long. Recognition is the first step  —  and with it, we can push for meaningful change in policy, healthcare, and society. 

Remember, behind those stats are real people who have serious challenges in life. Start by showing us compassion and helping us feel less isolated.

Hemmenway concludes, “And to every person living with pain: we see you, we hear you, we recognize your experience, and you are not alone.”

Pain Points

“Being seen and heard is incredibly helpful. There is a clear distinction between pity and compassion. Pity isolates and separates those who offer it from the recipient. Compassion connects the two parties, thus alleviating some of the loneliness.”
—Michele Cambardella 

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“Chronic pain builds a quiet, unspoken prison — one where the body’s suffering is only deepened by the loneliness that grows in its shadow.” —HIMA

“Since I retired in January, I’m here with my wife, who suffers from chronic pain, almost 24/7. I do what I can, but it still doesn’t scratch that isolation itch.” —Joel Everhart

Pain Points are comments on this essay as it appeared originally on Medium.com. They are solely the opinion of the commentators and do not necessarily reflect the views of the book author or publisher.