Making space for the identify shifts that come with a long-term diagnosis
Written by Dr. Antonia Repollet
Licensed Clinical Psychologist
Certified School Psychologist
GI Psychology
When living with a chronic illness, the diagnosis is only the beginning. What often follows—quietly, confusingly, and painfully—is grief. Not always the kind associated with death, but a slower, less visible kind: the mourning of the you you used to be. This emotional process is both real and valid, yet too rarely acknowledged.
Whether you’re navigating Inflammatory Bowel Disease (IBD) or another autoimmune condition, chronic pain, or functional GI disorders, it’s common to experience changes in your roles, routines, relationships, and sense of self. That’s not just frustrating—it’s a form of ambiguous loss.
Understanding the Loss of the “Old You”
Ambiguous loss is a term coined by family therapist Dr. Pauline Boss, describing losses that lack clarity or closure (Boss, 2006). In the case of chronic illness, it’s the persistent, often invisible grief that arises when your body or abilities shift in ways you didn’t choose—and can’t fully control.
You may find yourself saying:
- “I used to be able to do that.”
- “I just want my old energy back.”
- “I don’t recognize myself anymore.”
These are not signs of weakness. They’re signs of grieving a version of you that no longer exists in the same way.
The Psychological Stages of Chronic Illness and Chronic Pain
Dr. Jennifer Martin (2015) outlines these emotional shifts in her excellent post, The Psychological Stages of Chronic Illness/Chronic Pain. Much like the stages of grief, people living with chronic conditions may move through phases such as denial, anger, bargaining, anxiety and/or sadness, and eventually—if space is made for it—acceptance and integration.
The important thing? These stages are not linear. You might revisit sadness after years of acceptance. That doesn’t mean you’re failing. It means you’re human.
Making Space for Identity Shifts
Living with a long-term condition often means recalibrating what “normal” looks like. For many people, this includes:
- Letting go of old metrics of productivity
- Redefining social roles (e.g., caretaker, athlete, perfectionist)
- Adjusting how and where joy is accessed
- Advocating for needs in ways that feel vulnerable or unfamiliar
Research shows that those who adapt with psychological flexibility—the ability to face difficult thoughts and feelings while staying connected to personal values—report better outcomes in chronic illness adjustment (Graham et al., 2016; McCracken & Vowles, 2014).
What Helps?
Here are a few approaches that can support this emotional transition:
Name the grief
Giving it language helps you honor it. Try: “I’m grieving how easy things used to be.” or “This isn’t the life I expected, and I’m learning to live it anyway.”
Write a letter to the “Old You”
This practice, often used in therapy, can help you honor what you’ve lost while acknowledging your resilience. (Want a guided version of this? Reach out here.)
Practice psychological flexibility
Therapies like Acceptance and Commitment Therapy (ACT) help patients increase flexibility and reduce suffering by separating identity from symptoms.
Connect with others
Whether through support groups, online communities, or a therapist who gets it, being seen and understood by others with chronic illness can be deeply validating.
You Are Not Broken
You are not the same as you were before your diagnosis—but that doesn’t mean you’re broken. Making space for grief allows room for meaning, adaptation, and even post-traumatic growth. As you move through this process, be gentle with yourself. You are navigating something layered, real, and hard.
And you’re not alone.
Explore our resources, schedule a free consultation, or reach out at admin@gipsychology.com to learn more.
References
Boss, P. (2006). Loss, trauma, and resilience: Therapeutic work with ambiguous loss. Norton Professional Books.
Graham, C. D., Gouick, J., Krahé, C., & Gillanders, D. (2016). A systematic review of the use of acceptance and commitment therapy (ACT) in chronic disease and long-term conditions. Clinical Psychology Review, 46, 46–58.
Martin, J. (2015, April 27). Psychological stages of chronic illness/chronic pain. Jennifer Martin, Psy.D. https://www.jennifermartinpsych.com/yourcolorlooksgoodblog/2015/4/27/psychological-stages-of-chronic-illnesschronic-pain
McCracken, L. M., & Vowles, K. E. (2014). Acceptance and commitment therapy and mindfulness for chronic pain: Model, process, and progress. American Psychologist, 69(2), 178–187.