When Pain Persists: The Reality of Chronic Illness

Co-authored by Nina Bakoyiannis, Ph.D., and Amy Vigliotti, Ph.D.

Chronic pain can feel like an overbearing presence. Some describe it as an unwanted guest that turns up unannounced to dinner parties. Others speak of it as an unrelenting shadow that follows them wherever they go. It is no secret that chronic pain influences daily life in physically and emotionally demanding ways.

Temporary pain is different—it is an evolutionary function that signals to the body that an injury needs to be tended to. While that pain eventually subsides as healing ensues, chronic pain due to disability or illness can persist for years, sometimes without a clear cause or resolution. Many are left grappling not only with the physical pain in their bodies, but the psychological suffering that accompanies it.

The Cycle of Chronic Pain

Chronic pain exists in cycles that impact the mind and body (Turk & Okifuji, 2002). When pain persists, enjoyable activities can become too physically demanding. Imagine a former tennis player who can’t be on the court due to an injury. Or perhaps a parent who can’t pick up their child due to chronic back pain. When engagement in life decreases, it is common to experience frustration, sadness, or anxiety. Thoughts such as, “This will last forever,” or “When can I return to….?” tend to emerge, which fuels the distress and hopelessness. In the face of this, many then further withdraw from activities they used to enjoy, often due to the worsening pain, dysphoria, discouragement, or some combination of these.

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Coupled with the emotional complexity of chronic illness, our society is not well set up to meet the needs of those with chronic conditions. As a result, many retreat not because of their own hopelessness, but simply because their careers, social environments, and local communities aren’t accommodating to people with chronic conditions. Jobs may not provide the accommodations needed. Public transit systems are often centered around long periods of standing, making traveling unattainable or risky. Loved ones may have a hard time understanding, they may not know what to say, or even may begin to exclude the individual. Over time, as this cycle deepens, lives become smaller and pain becomes deeply emotional.

We are discouraged from talking about this in our modern world. Our society praises the silent sufferers. We reward the individuals who “power through” pain and wear it like a badge of honor while continuing to rack up accomplishments. Common inspirational quotes such as "the only disability in life is a bad attitude” reinforce the misconception that being impacted by disability or illness is a choice one makes.

Chronic Illness and Character

When we frame being affected by illness as a weakness of character, we allow an exclusionary society that shifts the burden of isolation onto the individual. We expect them to "overcome" or “reframe” the impact of pain to conform to the unwelcoming world around them. When society is built around able-bodied standards of productivity and socialization, it amplifies the social withdrawal of those with chronic conditions.

People react to this in various ways. Some feel discouraged in the face of this, and isolate themselves further. Others push themselves to the brink of exhaustion, trying to keep up with the demands of the world, only to worsen their pain. Both reactions are two sides of the same coin—both shaped by a culture that denies the reality of human vulnerability. As Brené Brown writes in her book Daring Greatly, “Vulnerability is not winning or losing; it’s having the courage to show up and be seen when we have no control over the outcome.” It is a demanding act of courage to acknowledge our limitations not as something to be just ignored or entirely surrendered to, but simply as the messy, complicated, and beautiful reality we continue to weave.

There is certainly much progress to be made in how society approaches illness to better support the quality of life of those with chronic pain. Nevertheless, there are still ways to reclaim power at the individual level. Living with chronic pain requires a balance between slowing down to listen to your body while still allowing yourself to live life alongside the pain.

Finding Community and Support

Rather than resisting or surrendering completely to the pain, approach each day with mindful intention—acknowledging all the emotions that arise from pain without judgment. Share your experience, name your emotions, and communicate your needs.

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Allow yourself to find a community that can meet you where you are. Seek meaning out of your experiences—not as a way to justify pain, but to make space and advocate for the lives that exist alongside it.

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