What psychology teaches us about our chronic illness journeys

Body changes can raise disturbing feelings, such as looking in a mirror and seeing a reflection that may feel spiritually empty, unproductive, ugly or weak.

Unpleasant sensations such as pain, pins and needles, soreness coursing through limbs and an inexplicable fog filling the head remind us that this body is not the same one anymore, prompting us to wish there were a way to get back there. It may feel impossible to live well unless you do.

This is the disillusionment that most of the population will face at some point in life through aging, chronic pain or invisible illness (a disease or health problem that cannot be externally seen, including autoimmune diseases, chronic pain and fatigue, and recently, long COVID).

Chronic pain, illness and aging

Recent global estimates suggest one in five people currently experience chronic pain. The most prevalent chronic pain reported by adults ages 75 and older includes low back pain and migraine, while tension-type headaches are more often experienced by younger adults. Chronic illness (diabetes, heart disease and other mid- to late-life diagnoses) affects about three-quarters of the world population.

Despite how common chronic illness is worldwide, the nuances of navigating a changing body are not often discussed. It’s time for an honest, evidence-based conversation about what it means to navigate chronic pain and illness, aging and transforming identity post-diagnosis, and how to grieve this loss and maintain meaning through these changes.

Why it matters: what grief looks like

Research suggests that those with internalized stigma of chronic illness are more preoccupied with how their illness detracts from their view of themselves and have a greater tendency to overlook positive aspects of life with a chronic illness.

Psychologists have observed how preoccupation with illness or pain is often accompanied by other grief behaviors. A 2025 study explored how Danish patients with chronic illnesses navigated loss and growth. The study found that many people with chronic illnesses mourned the life they thought they would have, often leading to a loss of motivation and joy in everyday life.

The perception of losing the life they had once envisioned is often accompanied by a focus on getting back to the “before illness” version of themselves as people struggle to accept how their body has changed, perhaps in how it looks but definitely in how it feels.

These changes and associated feelings of loss often permeate a person’s sense of identity, as well as their perceived roles within social relationships. Many report a fear of burdening others, especially loved ones, often describing feelings of guilt that “others have it worse than I do.” This is where internalized stigma festers.

Some people have also described feelings of anger, isolation, shame and exhaustion accompanying sadness. Meanwhile, others have expressed frustration over a gradual loss rather than a “clean break,” accompanied by an inability to find closure.

Using psychology to make sense of grief

First, it’s important to understand why accepting this continuous loss feels so impossible. Theories of control in psychology state that humans desire control, or the ability to achieve a desired outcome according to our own standards.

When that ability is seen as stripped away, people are more likely to experience negative mental health symptoms, like anxiety, depression and even grief. Specifically, feelings of diminished perceived control (subjective belief in our ability to achieve desired outcomes) occur when we face continuous roadblocks to living our desired life because of chronic illness.

Making meaning from change … and loss

One of the major consequences of loss and major life change is that it can disrupt meaning and challenge identity, purpose and assumptions about the future. At a time when people feel there is little they can control, psychologist Robert Neimeyer’s Meaning Reconstruction Theory poses the questions: “How do I move forward?” and “What matters most?”

While the original theory was proposed as an approach to coping with the loss of a loved one, the process is somewhat similar to grieving the close ally that is your body. This theory approaches grief by making sense of the loss and finding ways to rebuild a sense of purpose in a changed life (and body).

To answer relevant questions about how to move forward with chronic illness, two ongoing approaches are needed: integrating the loss and recentering purpose and meaning.

Integrating the loss may look like processing significant bodily losses in therapy, finding trusted loved ones to talk with about the loss and focusing on being realistic about your current body without judgment.

Second, recentering purpose during this major life change involves understanding your why: Why is this loss so significant to you? Why does it hurt? Maybe it’s because you love hiking in the mountains and a new diagnosis of arthritis feels like the end of this joy. Part of rebuilding meaning is finding new approaches to fulfilling this purpose—perhaps hiking will look different, but nature can be accessed and loved with chronic illness present.

Rebuilding meaning might also look like making meaning from this loss: What has this change taught you about yourself, about the impact you can make? Approaching the present and future with this perspective helps process grief in a more protective way.

Living with chronic pain, illness and the changes that come with aging often involves grieving physical loss, but also shifts in purpose, relationships, identity and future plans. While these changes challenge our perceived control and purpose, the Meaning Reconstruction Theory suggests that acceptance and growth come with integrating loss and rebuilding purpose alongside these changes.

Although the present is different than anticipated, fulfillment is still possible with your current body.

Who’s behind this story?

Gaby Clark

MA in English, copy editor since 2021 with experience in higher education and health content. Dedicated to trustworthy science news.

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Andrew Zinin

Master’s in physics with research experience. Long-time science news enthusiast. Plays key role in Science X’s editorial success.

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This article is republished from The Conversation under a Creative Commons license. Read the original article.