Every person living with chronic pain has a unique story to tell.

Together, those stories create a chorus that points to undeniable truths: What it’s like living with pain. How others can help—and what isn’t helpful. Where gaps exist in treatment and understanding. And how we can all move forward.

For years, the U.S. Pain Foundation has heard from thousands of people living with pain, through national surveys, peer support group meetings, and individual conversations and interactions. Here are nine lessons we’ve learned, shared with comments from people who have taken our surveys.

1. Listening Should Come Before Assumptions

“We have been beat down so far, and no one will listen.”

People living with pain are used to hearing the words “I don’t know” from healthcare providers and loved ones—regarding what’s wrong, what the diagnosis is, what treatment will work best, why a treatment isn’t helping.

On the other side of the coin, they often find themselves on the receiving end of unsolicited advice from loved ones or acquaintances.

“If I could change one thing about public understanding, it is that I am so tired of getting advice or ‘Have you tried…’ I have been living this way for almost a decade. I’ve seen every specialist. It is exhausting constantly nodding along when people chime in.”

Unanswered questions are an unfortunate reality of life with pain. But there’s something any provider, friend, or family member can do—and that’s listen.

“If you love someone in chronic pain, the best way to support them is to listen.”

For someone living with chronic pain, feeling validated and believed can mean the world.

“It’s real. We’re not making it up. Believe us.”

 

2. People With Pain Are Experts in Their Own Lives

Brief medical appointments are often dominated by test results and scores on a pain scale. But people living with pain know more about what’s happening in their own bodies and lives than what’s captured in a chart.

“People with chronic pain need to be believed as accurate reporters on their own condition.”

This applies at every age. For example, kids and teens living with pain often develop a deep understanding of their conditions, treatment, and needs. They know their own experiences, yet too often their voices are overlooked or underestimated.

“Even though you cannot see it, my child is in pain every moment, and if they want an accommodation, it is because they need one. Trust them.”

In our 2025 national survey of kids and teens with pain, 19% said they don’t feel believed when they talk about their pain, and 61% said they are only sometimes believed.

“I wish they would listen to me when I tell them that what I’m feeling isn’t normal. I know the difference between something just hurting and something to be concerned about, and I feel like they think I don’t. I know when something is wrong with my body.”

Individuals living with pain, including kids and teens, should be directly involved in decisions about their care.

 

3. The Goal Is Not Simply Less Pain. It Is More Life.

“All we want is a chance for a life.”

For people navigating chronic pain over years or a lifetime, treatment and management are about much more than reducing pain levels. They’re about protecting and rebuilding function.

“I wish people understood that I want to do more than my body will allow.”

In practical terms, that can mean preserving or regaining the ability to work, go to school, maintain relationships, care for children and loved ones, maintain independence, enjoy hobbies, connect with others, and simply participate in life.

“I am not my pain. I am a woman who wants to contribute to society.”

It’s about quality of life—not just a number on a pain scale. And functional improvement looks different for each person.

“Living with chronic pain is about so much more than just pain. But if you can get the pain to a manageable level, a person can start to live a social, productive life again in their own eyes. We don’t expect anything to take the pain completely away, but just to get it to a level where we can be functional every day.”

 

4. There Is No One-Size-Fits-All Approach to Pain

The complexity of chronic pain means that a treatment plan that works for one person may not work for the next—even if they have the same type of pain. And even when someone lands on a treatment strategy that works for them, their needs may change over time.

“The treatments today are one-size-fits-all, and we are not all the same.”

People with pain consistently share that they need more choices when it comes to available treatments.

“There are a lack of options for people with intractable chronic pain.”

In a recent U.S. Pain survey about over-the-counter (OTC) pain medication use, 86% of respondents shared that having more OTC options would be helpful, and 68% shared a desire for more access to non-opioid treatment options.

Multidisciplinary care—combining medication and medical treatment with restorative therapies, complementary and integrative approaches, behavioral health care, and self-management—is considered the best approach for pain management, according to various research findings. This approach is outlined in the Pain Management Best Practices Inter-Agency Task Force Report. U.S. Pain’s Director of Policy and Advocacy, Cindy Steinberg, served on the task force as the only patient advocate and representative of a patient advocacy organization. 

“There are no magic bullets or all-encompassing treatments. Thriving is a matter of having an array of techniques, life hacks, medications, and mental health adherences in your bag of tricks.”

Many respondents across multiple U.S. Pain surveys shared that there is no single option that offers consistent or complete relief, and that while multidisciplinary care is crucial, a lack of care coordination makes receiving holistic care difficult.

“Integrative pain care should be the standard, and it should be made accessible. As of now, the onus is on the patient to string together an integrative care plan, and if you don’t have the money, you are at an incredible disadvantage.”

 

5. Care Isn’t Truly an Option if You Can’t Access It

“We often can’t afford the care we need, be it due to time, fighting with insurance, and actual cost of care.” 

The existence of effective treatment options is one step. Making sure everyone has access to care is another—and it can’t be ignored.

Cost, insurance barriers, geography, transportation, bias, pharmacy barriers, provider availability and knowledge, and other structural obstacles keep too many individuals with pain from accessing the treatments that could help them.

“It’s not just hard from the standpoint of living in this body, but also the external barriers like insurance issues. I’ve spent over 100 hours across six months trying to get a medication covered by our insurance only to get thwarted at every turn. It’s not just draining but demoralizing and dehumanizing.”

In U.S. Pain’s 2022 national survey on barriers to care, 77% of respondents said that cost kept them from accessing at least one treatment option. Half noted that mobility issues kept them from accessing treatment.

“Traveling is impossible, but most of my doctors are an hour away, because I need specialists.” 

Among those taking our 2025 national survey, almost one-quarter of those whose household income was less than $50,000 had not seen a provider at all for their pain. And over one-third said that having a lack of nearby providers had prevented them from accessing care.

“Relief is possible. Having consistent access to it, in its many forms, is the barrier.”

 

6. Mental Health Matters. So Does Believing Physical Pain.

Chronic pain can fundamentally impact emotional and mental health. And mental health conditions can increase pain and make it harder to manage, creating a cycle that’s difficult to break.

“Pain that persists, pain that’s chronic, can overload your mental capacities. It’s difficult to remember little things, it’s difficult to plan the future, it’s difficult to do basic, ‘normal’ things. There’s such profound frustration in not being able to access my body and even my mind, the most intrinsic parts of my identity, because I’m swept up in the daily bumble of ‘going through the motions.’ It’s a compound struggle that builds, because life doesn’t allow for a break.”

Almost 9 in 10 of people living with pain who took our 2025 national survey said that they experience anxiety or depression due to their pain, and over half noted that having depression or anxiety makes it more difficult to manage their pain. Strikingly, 85% said they feel overwhelmed by the combined weight of pain and mental health symptoms.

At the same time, individuals living with pain experience profound harm when their physical symptoms are dismissed as psychological. “It’s all in your head” is an all-too-common refrain.

“I wish people understood that pain is real, it is debilitating, and there is definitely a mental health aspect to it that needs to be addressed. The physical and emotional burden is always there.”

Recognizing both realities—that pain can affect mental health, and that physical pain remains real even when mental health challenges are present—is imperative.

“Many of us need mental-health support not because our psychology creates pain, but because the physical stress of long-term pain has mental health consequences.”

 

7. Support Is More Meaningful When People Can See Themselves In It

Many pain experiences are shared, across ages and diagnoses. But at the same time, the uniquely individual nature of chronic pain means that each person’s experience with pain is their own.

“My kid feels like she is the only kid with chronic migraines.”

Finding resources and support tailored to certain ages, demographics, diagnoses, or life experiences can feel especially relevant and validating.

That need has shaped some of the resources U.S. Pain has developed, including “Living Strong With Chronic Pain,” a version of our free “Living Well With Chronic Pain” guide created specifically for veterans and military members.

“I served my country, and my country needs to listen and serve me and those like me.”

We’ve heard over and over from people with pain that connecting with others who understand can be a turning point in their journey. That is one reason age-specific, diagnosis-specific, and population-specific resources and peer support can matter so much.

“It’s very easy for somebody with chronic pain to isolate, which is not good for mental health. It is very helpful for somebody with chronic pain to speak to others with chronic pain. Because they understand, where others just don’t.”

 

8. Pain Affects More Than the Person Living With It

Chronic pain creates a web of impact surrounding the person living with it. Parents and guardians, siblings, spouses and partners, children, caregivers and care partners, friends, and others who provide support are all touched by pain as well.

Those individuals also need support, and they often don’t receive it.

“Caregivers, parents, and friends need to have resources and the knowledge on how to recognize when it becomes too much for the person they are caring for.”

The impact is complex: in our 2025 national survey of caregivers and care partners, 94% reported mental or emotional strain, and 85% reported physical strain. Fewer than one-third felt truly prepared for caregiving, and more than 4 in 5 said they don’t have access to adequate resources or support.

Parents and guardians of kids living with pain who took our 2025 national parent survey shared similar challenges—and 61% said that they, too, are living with chronic pain. They described difficulties for siblings, as well: 44% experienced changed sibling relationships, and 26% took on caregiving roles or additional chores at home.

“The caregivers and the siblings need emotional support, financial support, and reprieve for the families to connect in different ways that just the pain or disability. We need space for families to have fun. So often, we get stuck in the muck of the daily management, that we lose sight and bandwidth to plan fun and connection in different ways.”

Caregivers, care partners, and loved ones need recognition and resources that take their experiences into account.

“We need support for caregivers. We are not alone in this, although many times it feels like we are alone.”

 

9. Lived Experience Should Shape What Comes Next

“We need to understand the very real limitations, blind spots, and training and research failures of modern medicine, in this country and others, if we are to understand how people can find themselves in unrelenting pain with no cures and few treatments available.”

One of the biggest takeaways from countless conversations with people living with pain, and those who care for or treat them, is that the individuals navigating pain must have a voice in the solutions offered to them.

Most healthcare providers receive fewer than 10 hours of pain education in medical school, and 96% of U.S. medical schools didn’t require students to take courses on pain medicine as of 2018. According to our 2025 national provider survey, only 50% of providers feel adequately prepared to treat chronic pain.

“PLEASE listen to patients’ concerns. Include them in your education program to inform physicians about the pain process. If I say fresh air relieves my pain, do not tell me I am crazy; ask me to explain and educate you about how it helps me.”

What’s more, research aimed at developing new pain treatments is often designed without input from people with lived experience.

“I am a scientist and believe input from people with lived experience is important for research.”

Just listening to those living with pain isn’t enough—their insights must be positioned to help drive change, whether through provider education or research design.

“My voice matters because I’ve lived this reality for decades, and I can use what I’ve experienced to make someone else feel believed, understood, and less alone.”

 

These lessons are a reminder that listening is only the beginning. When we truly allow the voices of people living with pain to drive action, their experiences can help shape better care, stronger support, more relevant research, and a future where every person with pain feels heard, believed, and included.