by Nina Wachsman

There are over 50 million people in the United States that live with chronic pain. However, researchers studying pain have learned something important: perception of pain is personal, and may have more to do with other factors than just the physical cause of the pain.

For some, a pain ‘flare’ can be influenced by internal emotional factors or external environmental factors. What’s more, limited access to pain specialists, and the lack of knowledge or understanding of pain caused by rare conditions, can leave people in pain for a long time without a way to manage it.

More research into pain has explored how the relationship between the person in pain and their doctors can influence the recovery from a pain crisis. Some research has demonstrated that, when a doctor is aware of a person’s physical, psychological, and social issues, there is greater likelihood for a better outcome – such as faster recovery from a pain episode. Several factors, including pain that is difficult to treat, having limitations in moving around, and the social stigma of being viewed as a ‘chronic complainer” or “drug seeker,” can also impact results.

A recent analysis of several research studies on people’s experiences of living with chronic pain revealed many common issues, such as feeling as if:

• life is limited and lacking

• you are struggling against your body

• you are on a quest for a “Holy Grail” to help with the pain

• you’ve lost people’s confidence and belief

• you’re constantly trying to keep up appearances

• you feel the need to be treated with dignity

Doctors are challenged by the pressure to rush through appointments, reducing the time they have to both explore aspects of pain and how they can be addressed. Doctors may also not have easy access to resources to recommend to patients to help them make any lifestyle changes that can make a difference.

In one study, researchers not only interviewed people with chronic pain but asked the people to show their homes, living space, and medicine cabinets, and to demonstrate how and where they exercise, take their medication, and use assistance devices (such as canes or walkers). The interviews also collected information about people’s motivations, values, beliefs, pain experiences, their pain doctors, and current or past pain treatments. Most of the participants in this study (68%) had chronic pain for 5 or more years, and, for most (84%), the pain was severe enough to limit their ability to move, as well as think or talk about other things.

Six key learnings were shared by the participants in this study: 

1. Self-reliance: having been left alone to fend for yourself, you learn you are your own best advocate for relief.

2. Critical thinking: you need to be well informed when faced with making decisions, so you can reconcile medical advice received from doctors and learnings from your own research, even when the two are conflicting.

3. Creativity: designing and testing your own relief regimens until you discover what works for you.

4. Determination and resilience: Maintaining hope that researchers can find something that will help, even after years of seeking treatments, undergoing countless cold medical experiences, and facing ineffective research.

5. Generosity of spirit: People in pain have a special desire to aid other sufferers, hoping to help them avoid the mistakes and trials they have endured.

6. Identity and authenticity: People still want to be treated with respect and recognized as a person and not just by their pain. They can take hard news and appreciate it when it’s delivered frankly and with real support.

The researchers then developed 5 fictional characters that represent patterns they saw among the participants in their studies. Which one do you identify with? 

Persona 1: Diagnosis Detectives

Diagnosis Detectives are determined to find and fix the source of their pain. Almost everyone is a Diagnosis Detective at some point in their journey with chronic pain. Diagnosis Detectives often feel lost, isolated, and as if they are going down dead-ends to find effective treatments.

Persona 2: Searching Sufferers

Searching Sufferers tend to feel like they have little support. They seem themselves as outsiders of the care system, lacking clear information or resources. They often opt for naturopathic or over-the counter-treatment out of concerns about medications.

Persona 3: Multitasking Managers

Multitasking Managers spend years putting together an effective relief plan on their own. They are skeptical of the healthcare industry providing them with support, and, when they visit doctors, they likely have a very good idea of what they need. Multitasking Managers are most interested in mind-body connections and having a comprehensive treatment library to tap into. 

Persona 4: Tenacious Triers

Tenacious Triers are more knowledgeable about the reason for their pain versus the other groups. Tenacious Triers have been living with chronic pain long enough to know which treatments work for them and which do not and why, but still feel like they have not gotten complete relief. Emotionally, Tenacious Triers can be, among those with chronic pain, most at risk for hopelessness, distress, and psychological challenges.

Persona 5: Supportive Survivors

Supported Survivors have access to good care and a sense of having assembled what they need to feel adequately supported. Supported Survivors are confident in their belief of what is causing their pain and have accepted pain as part of their life. They feel they have a care team that helps them. While they experience many of the same frustrations as the other personas, they are not as angry about their condition or as mistrustful of the healthcare system.

Source: Cullen M, et al. Journal of Pain Research 2023:16 2803–2816