FINDING MEANING

When caregiving has been at the core of someone’s experience and identity, the end of caregiving can trigger not only distress, but also guilt and uncomfortable and unanticipated feelings of relief.  Similar to individuals who have lost a loved one to suicide (“suicide survivors”), raregivers might experience a period of prolonged or complicated grief. Raregivers who have lost a child might re-experience feelings of loss and grief for many years after their child’s death, especially during times that would have been milestones for their child. It can be difficult, too, to feel motivated to engage in life or connect with people who have not experienced a similar loss. These feelings are normal. 

Redefining Identity

Following the death of a loved one, many raregivers suffer identity loss and find it difficult to adjust to life without their caregiving role, whilst still also living with an acute sense of loss. For some raregivers, grieving involves not only the loss of their loved one, especially a child, but also involves grieving for the life they hoped to live with their loved one. Over time, it is possible for raregivers to feel stronger and develop a new identity. But it can take time to find a new sense of purpose in life, to re-enter the world of paid work, and to make new relationships with people who are not raregivers. 

Exploring Purpose/Giving Back

It is possible to reconnect with life and reinvent one’s sense of purpose and identity following the loss of a loved one with rare disease. It is valuable for raregivers to find and embrace sources of emotional support that affirm their relationship as a raregiver and encourage motivation to continue living. Caregivers of people without rare disease say that providing support to other caregivers and finding ways to honor and keep bonds with their deceased loved ones are helpful ways to explore purpose and give back. Many raregivers who have survived this stage find purpose in drawing on their lived experience to support research, advocacy, or fundraising, or by mentoring rare families or professionals.

Emotions: Bitterness, recovery, enlightenment, empathy, “Angel”

There is potential for raregivers to feel bitter and experience feelings of shame, blame, and isolation following the death of a loved one with rare disease. As a result, it can be extremely difficult for raregivers to talk about or, at times, even acknowledge their grief and loss. At the same time, family members, friends and acquaintances might be reluctant to talk about death and how the raregiver’s life has changed. But the lived experience of survivorship also sows seeds of empathy and makes it possible for heart-to-heart connection with others going through this experience. 

Support for the Finding Meaning part of the journey

Every raregiving emotional journey is unique and the types of support that raregivers need following loss will vary, but might include:

• Opportunities talk about the experience of loss with other raregivers who can provide empathy and acknowledge their experiences

• Support to lessen negative feelings and find purpose

• Space and time to make practical and lifestyle adjustments

“The Survivorship part of the journey can initially be a very complicated mix of grief and relief, accompanied by an overwhelming sense of ‘Who am I now?’ But it can also become an opportunity to redefine one’s identity and to find new purpose in life.” - Randy Phelps Ph.D., Clinical Psychologist and Rare Disease Family Member