The Pendulum of Rare Disease Coping: Navigating Grief, Loss, and Resilience

Far Right of the Pendulum: Adjustment & Resilience

On the adjustment and resilience side, many important aspects can foster adaptation, including:

Changing Identity: A rare disease can alter one’s sense of self, requiring reflection and adaptation to a new identity. Recognizing that identity is fluid and ever-evolving can be empowering. Moving from the idea that identity needs to be static to recognizing that identity can shift and change will greatly assist in moving toward resilience.

Securing Supportive Medical Teams: Having a team of knowledgeable and compassionate healthcare providers can make a significant difference in managing a rare disease. Seeking out specialists, patient advocates, and coordinated care can help ease the burden and gain additional learning within communities that understand the depth of rare diseases.

Finding Small (and Big) Moments of Joy: Even amid hardship, small moments of joy—whether through hobbies, relationships, or simple pleasures and milestones—can bring light into daily life.

Moving from Self-Care to Survival Care: While traditional self-care practices are important, sometimes patients must focus on “survival care”—meeting the most basic needs in times of extreme physical or emotional distress. Being able to focus on what is needed most for survival care in any given moment can lead to the ability to lean into identity changes as well as help to communicate with loved ones about what helpful support can look like.

Legacy and Storytelling: Sharing one’s journey, whether through writing, speaking, or other creative outlets, can be a powerful way to process experiences and leave a lasting impact. This sense of intertwined storytelling and legacy-making can be extremely empowering and fulfilling.

Middle of the Pendulum: Transition

Navigating the pendulum swing between grief/loss and resilience/adaptation is not passive—it is guided by several key transition forces, which include:

Seeking Meaning and Purpose: Finding purpose, whether through advocacy, relationships, creative expression, or personal growth, can provide a sense of fulfillment.

Connections: Building relationships with others who understand the journey—whether through online communities, support groups, or friendships—can provide invaluable emotional support.

Self-Compassion and Patience: Recognizing that healing and adjustment take time and allowing oneself grace during difficult moments is essential.

Balancing Advocacy Work and Self-Care: Many individuals with rare diseases become advocates, but balancing advocacy with personal well-being is crucial to prevent burnout and helpful in leaning into identity changes over time.

Finding a Felt Sense of Safety: Emotional and physical safety—having trusted support systems, reliable care, and personal coping strategies—creates a foundation for resilience.

The Pendulum of Rare Disease Coping: Navigating Grief, Loss, and Resilience

cont'd

TwoPersonalJourneys:NavigatingthePendulum

To illustrate this journey, consider Sarah and James, two individuals living with different rare diseases.

Sarah’sStory:TheOngoingDanceBetweenLossandResilience

Sarah, a 25-year-old living with a rare blood disorder, initially felt overwhelmed with grief upon her diagnosis. She mourned the active lifestyle she once had and struggled with frustration and fear for her future. Seeking support, she joined an online rare disease community, where she connected with others who understood and shared her experience. Over time, Sarah discovered small moments of joy — painting, meditation, and storytelling — helping her shift toward resilience.

However, just as she felt she had found balance, a severe flare-up forced her to pause her new hobbies and return to feeling isolated. She once again found herself grieving her body's limitations. A therapist helped her reframe this moment not as a failure but as part of the pendulum's natural swing. Gradually, she rebuilt her strength and found new ways to express herself,provingthatresilienceisnotadestinationbutanongoingprocess.

James’s Story: Finding Strength Through Setbacks

James, a father of two, was diagnosed with a rare degenerative neuromuscular disorder in his late 40s. At first, he found himself consumed by grief —mourning his physical decline and worrying about how his condition would impact his family. He withdrew socially, fearing he would become a burden. However, through the encouragement of his wife, he sought counselling and eventually connected with a patient advocacy group. With time, James shifted from despair to resilience, using his experience to mentor newly diagnosed patients. He found a renewed sense of purpose in sharing his journey, helping others navigate the same struggles. Just as he felt he had embraced his new role, an accidental fall leading to the worsening of his condition left him feeling powerless again. He fell back into grief, questioning his ability to continue advocating. But through support from his community and the reminder that his voice still mattered, he adapted once more—adjusting his advocacy efforts to fit his new limitations. His journey highlights how the pendulum never truly stops swinging, but each swing brings deeper understanding and new ways to cope.

The Pendulum of Rare Disease Coping: Navigating Grief, Loss, and Resilience cont'd

Conclusion:FindingBalanceintheSwingofChronicIllness

Thejourneyofcopingwithararediseaseisneverlinear.Itisaconstantmovementbetweengrief and adaptation, struggle and strength. There will be moments when the weight of loss feels overwhelming and others when resilience shines through in unexpected ways The pendulum may never stop swinging, but with time, support, community, and self-compassion, its motion canbecomemoremanageable

Copingwithchronicillnessisnotaboutreachingafinalstageofacceptance itisaboutlearning toleanintothebeautifulhardofthejourney,tolivewithintheflux,embracingboththedifficult and the hopeful. It is about constant movement back and forth between both ends of the pendulum. By acknowledging grief while also fostering resilience, individuals and their loved onescanfindasenseofbalance,evenintheever-changinglandscapeofrarediseaselife.

Kristy Brosz, MSW, RCSW

Kristy is a mental health therapist in private practice and is registered to see clients in 5 Canadian provinces including: BC, AB, SK, ON, and NS. Kristy's practice specializes in chronic illness and focuses on the intersection between trauma and grief.

Kristy has presented nationally and internationally and has authored 2 trauma-informed books, including one book on rare disease title: Letters to HAE: Finding Hope While Living with Hereditary Angioedema.

Contact: kristy@brosz.ca; www.brosz.ca/kristy