Navigating Identity After Treatment

When Survival Changes Who You Are

For many people living with sickle cell disease (SCD), your identity has been shaped—often from childhood—by pain, resilience, advocacy, community, and survival. Undergoing a bone marrow transplant or gene therapy can be life-changing, but it can also create an unexpected emotional challenge: an identity crisis.

This experience is common, valid, and rarely talked about. We are here to help you name it, understand it, and navigate it—at your own pace.

What Is an Identity Crisis?

An identity crisis happens when a major life event disrupts how you understand yourself, your body, your role in the world, or your future.

After transplant or gene therapy, survivors may find themselves asking:

Who am I if I’m no longer living the life I prepared for?
Am I still part of the sickle cell community?
Why do I feel grief even after a “successful” outcome?
Who do I talk to when others think I should just be grateful?

These questions don’t mean something is wrong—they mean you’re experiencing profound change.

Why Identity Shifts Are Common for Survivors

Sickle Cell Was a Core Part of Your Story

For many survivors, SCD influenced:

Daily routines and decision-making
Relationships and independence
Career or education paths
Advocacy, leadership, or community roles

When that framework changes, it can feel like losing a familiar version of yourself—even if the change is positive.

You Are Mourning While Healing

Survivorship can include grief, such as:

Grief for the childhood or adulthood shaped by illness
Grief for relationships or opportunities altered by SCD
Grief for the version of yourself who endured so much

Grief and gratitude can exist at the same time.

Survivor’s Guilt and Belonging

Some survivors struggle with:

Guilt about accessing curative therapies others cannot
Feeling “in between” communities—no longer fully identified as sick, but not fully carefree either
Fear of speaking up or taking space

You are allowed to belong, evolve, and stay connected in ways that feel authentic to you.

Signs You May Be Experiencing an Identity Shift

Feeling emotionally disconnected or numb
Loss of motivation or direction
Anxiety about the future despite your improved health
Questioning your purpose or role
Feeling unseen or misunderstood by others

These experiences are not a failure of resilience—they are part of psychological adjustment.