Rare disease grief is different from the grief we commonly think of around 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. Our sense of isolation is likely deepened by this experience since our version of grief does not align well with most people’s grief around loss to death of an older loved one.
Grief around living with a rare disease may include all of these subsets of grief:
- Grieving a Diagnosis
- Ambiguous Grief
- Anticipatory Grief
- Compound Grief
- Disenfranchised Grief
“Grief for rare disease patients and caregivers is unique in its depth and reach. It’s not just about the loss of health; it’s the life we imagined, the careers we can no longer pursue, the financial strain, the relationships that shift or fade – the list goes on. This is a grief that can’t be set aside or compartmentalized. It touches every corner of our lives and refuses to be ignored.” – Ronda Thorington, Rare mom
Hear more on grief from Ronda in this recorded Global Genes presentation:
Navigating Grief And Trauma with Ronda Thorington. Licensed Professional Counselor
In it she addresses:
1. The impact ambiguous grief and medically induced PTSD has on families
- Specific strategies to help empower families experiencing grief and trauma
- Signs that a family may be in need of additional supports and next steps.
“As the shock of a rare-disease diagnosis wears off, the grief can quickly arrive. Grief is the acute pain that accompanies loss. It can come in many forms, including anger, denial, guilt, bargaining, and depression. Grief can have emotional, physical, and physiological responses. It can be a numbing freeze or an all-out wail. Grief has its own trajectory and is different for all of us.
For me, as the shock wore off, the pain set in. Grief washed over me like an all-out flood. I’m talking on hands and knees, on the cold bathroom floor, wailing. This “Wailing” period was truly the definition of distress. I felt it in every bone of my body and with every beat of my heart. I grieved. I grieved for months.”
– Nikki McIntosh, Rare Mom
Read more in Nikki’s blog post Stages of a Rare-Disease Diagnosis
“It was a major turning point for my wife and me to learn that what we were dealing with was called grief. And to go on to learn the many subtypes of grief we were also facing. Menkes Disease was what was affecting our son, what was affecting us was grief. Having the right name for it helped me find resources and better understanding. It helped us to get to not closure (I don’t think closure is possible or desirable) but to some integration.“
– Daniel DeFabio, Rare dad
Hear more from Daniel in Grieving Diagnosis, Lack of Diagnosis and Loss
More Resources from Global Genes
Managing Mental Health, Ambiguous Grief, and the Impacts of Diagnosis and Disease Progression
Grieving Diagnosis, Lack of Diagnosis and Loss: 2023 RARE Advocacy Summit Session
Navigating Life with a Terminally Ill Child – Emily Rapp Black Keynote at Global Genes Summit 2022
The Continuous Grief of Chronic Illness
The Changing Role of Caregiver Advocates When Caregiving Ends
Webinar: Showing Up 101 with Myra Sack on frameworks for grieving and coping
“I’m certainly grieving with my diagnosis.
…Dr. Marc Brackett has a book “Permission to Feel” and I need to give myself permission to feel.”
– Adam Johnson, Living with a rare disease
More from Adam is in the video Grieving And Permission
“Grief can show up unexpectedly. Years after the diagnosis, we were out on a date and in between appetizers and cocktails, I started sobbing. My husband said, “Are you feeling okay? What’s wrong? Should we leave?” Suddenly, out of nowhere, I was thinking about the fact that I’d never go wedding dress shopping with our daughter. She was seven at the time. I realized later that I was grieving the loss of what I thought her life would be like, and, by extension, what mine would be like.” – Jessie Fein, Rare mom
More on this from Jessie is in her blog post The Steps After a Rare Diagnosis — What To Do Next
Hear more from Jessie on grieving in this panel session recording Grieving as a Community
“I went into a depressive time for several months while I was processing it (the diagnosis of STXBP1) and going through these multiple stages of grief.”
– Charlene Son Rigby, Rare mom
From the film Life After Diagnosis Day
Other Resources
Videos
Life After Diagnosis Day (Grieving the diagnosis) – short film, The Disorder Channel
Moving through Anticipatory Grief – Courageous Parents Network
Unfixed – I was, I am (Rare Adults) – short film
Super Powered Grief on Once Upon a Gene TV
Grief as a Superpower – Courageous Parents Network
Podcasts
A Place of Yes – A Grief Podcast
Rare Disease and Grief – Its Ok That You’re Not Ok with Megan Devine – Once Upon A Gene podcast
A Mother and Son Explore Grief – Courageous Parents Network podcast
Normalizing Grief with Meghann Crane-Russ – Brave Together podcast
These Two Rare Disease Parents: Chronic Compassion and Grief – Once Upon A Gene podcast
Websites
The Grief of Parents When a Child Dies – Compassionate Friends
Grieving Loss in the Rare Disease Community – by Jenny Jones
Supporting Your Partner Through Chronic Grief – Rare Parenting Magazine
Books
Breath Taking by Jessica Fein
The Grieving Brain by Mary Frances O’Connor
Finding Meaning: The Sixth Stage of Grief by David Kessler
Grief is a Sneaky Bitch by Lisa Kefavuer
Harnessing Grief: A Mother’s Quest for Meaning and Miracles by Maria Kefalas
Positively Rare edited by Erin Paterson
The Still Point of the Turning World by Emily Rapp Black
“Rob Delaney’s intimate look behind the curtain of grief in A Heart That Works speaks to the unbelievable atrocity that is child loss, exemplifying the anger, confusion, betrayal, and ultimately overwhelming love that’s left when a child dies. Profoundly raw, and unabashedly honest, this unflinching narrative explores what it means to continue on in this world as a parent when our child has left it ahead of us.
It’s a perspective I found to be so refreshing and personally validating when you’re not at the place of searching for silver linings in your pain, yet are desperate to be seen and understood.”
– Becky Benson, Rare mom
Hear more from Becky and Jessie on grieving in this session recording Grieving as a Community
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