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RARE Advocacy Exchange Session 6 : Grieving a RARE Diagnosis

September 23, 2025

Rare disease grief differs from the grief we commonly associate with losing a loved one to death. For those whose world is upended by a rare disease diagnosis, amidst the deluge of new information, new doctors, fears, and anxieties, it may not be clear that grief (even when there is no increased likelihood of death) has also intruded into our lives. Grief resulting from a rare disease is likely to be ongoing with continued and renewed uncertainty and chronic stress. This session will discuss managing many forms of grief, learning to live well in your new reality, and how to find organizations and resources that can help you cope. Community leaders will gain the skills to provide compassionate support and empathize deeply with those affected.

This session of the RARE Advocacy Exchange is from Sept. 15, 2025

Rare Disease Grief is a Sneaky Bitch: Grieving a RARE Diagnosis

Moderator:
Lisa Keefauver, Professor of Grief; Author, Grief is a Sneaky Bitch, Podcaster
Panelists:
Daniel DeFabio, Rare dad, Menkes Disease advocate, Global Genes
Jessie Fein, Rare mom, Author, Podcast Host, Mito Advocate
Ronda Thorington, Rare mom; Licensed Professional Counselor and Parent Coach A rare disease diagnosis brings unique and ongoing grief.

This panel explores the complexities of rare disease grief, offering strategies for managing uncertainty, chronic stress, and emotional challenges.  This powerful session created a sanctuary for honest dialogue around grief in the rare disease community.   Together, the panelists expanded the definition of grief beyond death, naming ambiguous, anticipatory, and disenfranchised grief, and explored how families can model healthy coping, create space for both sorrow and joy, and stay connected through the uncertainty of a rare diagnosis.

The discussion balanced raw honesty with practical strategies, emphasizing that grief is not something to “get over,” but something we integrate, carry, and live alongside—sometimes even alongside laughter, awe, and joy.

 

Topics addressed in this discussion include:

  •  How can our friends be better positioned to support us through grief?
  •  What has helped you think of grief differently?
  •  Why it was important to understand ambiguous grief, anticipatory grief, disenfranchised grief and other types in addition to grieving a loss to death?
  • Grieving a loss before a death is important and NOT disloyal to your loved one.
  • How did you learn to invite joy in the midst of your devastation?
  • How can parents support their children’s emotional health while navigating their own grief in the rare disease journey?
  • How can rare adults grieve the person the were before diagnosis?
  • What practical steps can families take to stay connected and resilient when grief threatens to overwhelm daily life?

Questions Posed & Key Answers

  • How can parents support children emotionally while grieving themselves?
    • Normalize feelings, model coping, maintain routines, and create small joyful rituals.
  • How do you cope with losing your “before” self after a diagnosis?
    • Name it as grief, ritualize the transition, practice compassion, and explore ways to carry forward core values into a “new version” of self.
  • What’s the best way for friends and family to check in?
    • Be specific, remove the burden of response (“no need to reply”), and offer concrete help (e.g., meals, rides, sibling support).
  • How do you balance grief that feels constant?
    • Accept grief as an ongoing companion. It shifts between foreground and background and can be integrated alongside moments of joy.

Related Resources:

Top takeaways from this panel include:

  • Tending to your own emotional, physical, cognitive needs in grief is important; it allows you to be more grounded and present for your child. 
  • Uncertainty and ambiguity can feel overwhelming, so periodically mindfully bring attention to the sweet or joyful things in your life you know are certain. 
  • Joy and grief can live together. It might not seem possible when you first get the diagnosis but they find a way to exist side by side.
  • Grief isn’t something that you ‘get over’ it’s something you learn to live alongside of; but with the right tools and support you can build connection, joy and resilience.
  • When thinking about the support we want from others, try to keep in mind how little we each knew about grief not long ago, and give grace if they still need to learn.
  • Grief is not only about death — rare disease brings ambiguous and  anticipatory grief that is just as real.
  • Feelings aren’t “good” or “bad.” They are meant to move through us, and naming them gives permission for healing.
  • Children learn by watching. Modeling healthy coping and allowing kids to see emotions (without overburdening them) helps normalize grief.
  • Structure and rituals matter. Simple routines (like pizza night) create stability in the chaos of disease and grief.
  • Permission to hold grief and joy. Both can coexist—pockets of happiness or corners of beauty help balance the weight of loss.
  • Disenfranchised grief is common. Society often doesn’t validate the grief of rare disease families; finding peer communities is critical.
  • Language shapes experience. Replace “but” with “and,” or “I am sad” with “sadness is upon me.” This small shift opens possibility.
  • Support others with specificity. Don’t ask “What can I do?” Offer concrete options—or create a “menu of help.”
  • Siblings grieve too. Remember brothers and sisters who often carry invisible burdens.
  • Awe and wonder build resilience. Small acts of kindness, noticing beauty, or moments of play strengthen our capacity to carry grief.

Key Quotes & One-Liners from the panel:

• “When grief is honored, courage returns—and true healing can happen.” – Nicole Boice
• “Feelings aren’t scary. They won’t undo us.” – Ronda
• “Ambiguous grief gave me permission to feel what I was already feeling.” – Jessica
• “Disenfranchised grief is what happens when society doesn’t recognize your grief as grief.” – Daniel
• “Grief is not about fixing—it’s about showing up, bearing witness, and holding space.” – Lisa
• “We need to find pockets of happiness.” – Ronda
• “Grief and joy sit at the same table.” – Jessica
• “Use ‘and’ instead of ‘but.’ The ampersand used to be the end of the alphabet—meaning there’s always more.” – Daniel & Lisa
• “I’m learning this version of myself.” – Damian (audience)

Considerations for Advocates & Community

• Normalize the ongoing grief journey for families—diagnosis, disease progression, and loss of expected futures all carry weight.
• Provide grief literacy training for staff, advocates, and volunteers to better support families.
• Build community “circles of support” where families can connect without needing to explain or justify their grief.
• Encourage ritual and routine as grounding practices for families navigating uncertainty.
• Recognize grief’s impact on mind, body, relationships, and spirit—and provide resources across all domains.
• Create spaces for siblings and extended family members to be seen, heard, and supported.

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