Understanding the Chronic Illness Journey: From Rejection to Acceptance and Beyond
Living with a chronic illness or chronic pain is more than just managing symptoms. It often means navigating changes to identity, sense of self, relationships, and what feels possible in life. Researchers who study illness identity describe four states people might move through: Rejection, Engulfment, Acceptance, and Enrichment (Bulck et. al, 2018; Shneider et. al, 2024).
Understanding these states can help you notice where you are, what you might need, and what might feel supportive as you cope with your illness journey. These aren’t linear stages — you may move back and forth, live aspects of more than one state at once, or sit somewhere between them. That’s okay. The journey is yours.
What is Illness Identity?
Before diving into the four states, it helps to know what “illness identity” means. It refers to how much your illness becomes part of how you see yourself — how much it shapes your daily life, thoughts, choices, relationships, and values (Bulck et. al, 2018; Shneider et. al, 2024).
How illness identity is experienced can have real effects:
When illness is largely rejected or overwhelmingly present (engulfed), there tends to be greater distress, worse mental health outcomes, and more difficulties with managing treatment or self-care (Bulck et. al, 2018; Oris et al., 2018; Shneider et. al, 2024).
When illness identity is more accepted, or even enriched, people report better psychological well-being, better quality of life, and greater resilience (Bulck et. al, 2018; Carroll et. al, 2020).
The Four States
Here’s a closer look at what each state tends to feel like, common challenges, and what can help move toward more adaptive places.
| State | How it Feels | Risks | What Might Help |
|---|---|---|---|
| Rejection | A sense of disbelief, denial, or anger. Feeling cut off from your body and life before illness, desperately trying to return to “normal.” | Delaying treatment, pushing beyond limits, worsening symptoms, emotional exhaustion. | Gentle education about the condition, validating feelings of grief and frustration, pacing activities, and early psychological support to process the shock. |
| Engulfment | Life feels consumed by illness. Identity revolves around symptoms, appointments, and restrictions. A sense that the illness is controlling every decision. | Isolation, depression, loss of hope, relationships strained by constant focus on illness. | Support groups or therapy to expand identity beyond illness, mindfulness practices, reconnecting with small pleasures and non-illness roles. |
| Acceptance | A growing ability to acknowledge the reality of the illness without giving up. Recognising limits and making balanced choices. | Risk of slipping back into rejection or overwhelm during flare-ups or setbacks. | Developing realistic routines, self-compassion practices, collaborative medical care, and adaptive coping strategies that honour both needs and desires. |
| Enrichment | Finding meaning and growth through the experience. Illness is part of life but not the defining feature. Gratitude and purpose begin to surface. | Pressure to remain “positive,” overlooking ongoing medical needs, others misunderstanding the journey. | Continuing self-care, mentoring or supporting others, pursuing fulfilling activities, maintaining flexibility when challenges arise. |
Moving Between States: What to Know
These states aren’t fixed. Most people move back and forth, sometimes over days, weeks, or years. In times of flare‐ups, pain, or new losses, rejection or engulfment may become more prominent again. That’s natural. Real progress doesn’t mean never slipping back, but having tools to move toward more peaceful states (Bulck et. al, 2018; Oris et. al, 2018).
There’s no “right” timeline. What matters is acknowledging where you are and finding compassion for yourself there.
Support from others who understand, whether peers with chronic illness, therapists, or compassionate friends/family, can make a big difference. Social validation helps reduce shame and isolation.
What Helps in the Chronic Illness Journey
Here are some evidence‐informed suggestions to help you move toward acceptance and possibly enrichment, while reducing the weight of rejection or engulfment:
Psychoeducation — Learning about your illness, what you can do, what to expect. That can reduce fear and help with acceptance.
Mindfulness & Compassion Practices — Being present with what is, without harsh judgment. Learning to be kind to yourself when things are hard.
Values Clarification — What matters most to you (relationships, creativity, purpose, rest, joy)? Let those guide where to put your energy.
Goal‐setting (small, meaningful goals) — Not all goals will be illness‐related. Celebrate what you can still do.
Connection & Peer Support — Hearing others’ stories of moving through the states can normalize your own experience.
Therapeutic support — Therapies like Acceptance and Commitment Therapy (ACT), Narrative Therapy, parts work, somatic therapies, DBT, or Brainspotting can help.
Self‐care — Physical rest, pacing, good nutrition, rest, managing flare ups. These help reduce overwhelm so your mind has space to do the internal work.
Realistic Expectations & Gentle Reminders
It’s okay to feel frustrated, angry, or sad. Those feelings are valid, especially in rejection or engulfment.
Acceptance does not mean giving up hope or resigning to suffering. Rather, it's about finding ways to live alongside the illness, with as much agency as possible.
Enrichment does not erase the pain or loss — it’s about finding meaning, growth, or new perspectives despite the illness, not because the illness is “good.”
The journey of chronic illness isn’t just physical — it’s deeply emotional and relational. Recognising Rejection, Engulfment, Acceptance, and Enrichment as possible parts of your illness identity can help you feel less alone, more understood, and better able to find supports that truly help.
You may already live partly in Acceptance or Enrichment. You may feel stuck in Rejection or Engulfment right now. Wherever you are is okay. What matters is compassion, connection, and small steps toward what feels life‐giving.
References:
Bulck, L., Luyckx, K., Goossens, E., Oris, L. & Moons, P. 2018. Illness identity: Capturing the influence of illness on the person’s sense of self. European Journal of Cardiovascular Nursing. 18(1): 4-6. doi:10.1177/1474515118811960
Carroll, S., Laufer,M., Thomas-Kowal, P., Lossie, A., & Moss-Morris R. 2020. From Engulfment to Enrichment: Associations Between Illness Representations, Self-Concept, and Psychological Adjustment in Mayer-Rokitansky-Küster-Hauser Syndrome, Journal of Pediatric and Adolescent Gynecology, 33(6), 639-648. doi: 10.1016/j.jpag.2020.07.006.
Oris, L., Luyckx, K., Rassart, J. et al. Illness Identity in Adults with a Chronic Illness. J Clin Psychol Med Settings 25, 429–440 (2018). doi: 10.1007/s10880-018-9552-0
Shneider, C.E., Robbertz, A.S. & Cohen, L.L. 2024. A Systematic Review of Relationships Between Illness Identity and Health-Related Outcomes in Individuals with Chronic Illnesses. J Clin Psychol Med Settings. 31, 130–142. doi: 10.1007/s10880-023-09973-1