Building Psychological Flexibility
Acceptance + Commitment Therapy (ACT)
Psychological flexibility is the ability to adapt to internal experiences (thoughts, emotions, memories, physical sensations) and external stressors (medical uncertainty, life transitions, changing health needs) in ways that support your well-being and quality of life. For people living with sickle cell disease—and for transplant and gene therapy survivors in particular—psychological flexibility is a critical survivorship skill.
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Research shows that psychological flexibility is more strongly associated with reduced pain-related disability and improved functioning than pain frequency or severity alone. In other words, how we relate to pain, uncertainty, and emotional distress often matters as much as—if not more than—the symptoms themselves.
At Sickle Cell Prodigy, our programs are designed to support survivors beyond clinical milestones by addressing the emotional, cognitive, and identity-related aspects of living after a transformative therapy.
We do this through:
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Evidence-based mental health education tailored to sickle cell disease and survivorship
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Survivor-centered tools that normalize emotional challenges after transplant and gene therapy
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Accessible skill-building content grounded in behavioral science and lived experience
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We want to help patients build the capacity to respond to stressors with intention rather than avoidance—supporting long-term mental health, resilience, and self-efficacy.
One well-established, evidence-based approach that supports psychological flexibility is Acceptance and Commitment Therapy (ACT).
ACT Skills for Survivors
1.
Mindfulness
Being present in the moment without judgment.
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Try:
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Mindful breathing
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Gentle mindful movement
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Noticing sensations, thoughts, and emotions without trying to change them
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Mindfulness helps reduce emotional reactivity and supports nervous system regulation.
3.
Values
Chronic illness and intensive treatments can disconnect people from their values.
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Values might include:
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Family
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Independence
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Advocacy
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Creativity
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Health
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Purpose
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Research shows that taking values-based actions can reduce depression and increase life satisfaction.
2.
Acceptance
Acceptance does not mean giving up.
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Acceptance does mean:
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Acknowledging difficult thoughts, emotions, or sensations
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Finding new ways to relate to pain or uncertainty
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Being willing to experience discomfort in service of what matters most to you
4.
Committed Action
Choose one small goal connected to your values, such as:
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Medication adherence
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Nutrition or gentle movement
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Returning to school or work
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Spending time with loved ones
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Intentional rest or self-care
Ask yourself:
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When and where will I do this?
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For how long?
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How do I feel afterward?
Progress—not perfection—is the goal.
Emotional Support
Tips for Survivors
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Seek mental health care from providers familiar with your chronic illness or spiritual beliefs
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Join a transplant or gene therapy survivor support group
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Journal to process identity shifts and emotions
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Practice mindful breathing during periods of anxiety
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Engage in advocacy or peer mentorship when ready