Guide to grief
Global Genes has created a guide tailored to rare disease grief, which is ongoing and unique to the rare community.
Global Genes highlights that the rare community’s ‘version of grief does not align well with most people’s grief around the loss or death of an older loved one.’ When a rare diagnosis upends your world, grief can sneak in.
Global Genes’ guide covers the following five subsets of grief that occur when living with a rare disease:
Grieving a diagnosis
Emotional response to learning about a significant medical condition, either for oneself or for a loved one, and realising that life will change in unexpected and often challenging ways.
Ambiguous grief
When the loss is unclear or lacks closure resulting in emotional uncertainty.
Anticipatory grief
The emotional response experienced when a loss is expected but hasn’t yet occurred.
Compound grief
When a person experiences multiple losses in a short period of time, or when unresolved grief from a previous loss heightens the emotional impact of a new one.
Disenfranchised grief
When grief is not acknowledged or validated by society, leaving the grieving person feeling unsupported or isolated.
Read testimonials from the rare community about their experiences with grief and view resources tailored to support you through your journey.
The resource shared here is an external source that Beacon had no involvement in creating. Whilst we believe this resource will be of benefit to our community, we cannot verify the accuracy, completeness, or reliability of the information provided in this resource. Sharing this resource does not imply endorsement, approval, or affiliation, nor have we received any compensation or benefit in return for sharing it. Please exercise your own judgment, and if necessary, consult with a qualified professional when relying on external information.