When I was 14, my brother and only sibling, Ted, died. One of my more memorable experiences from that time is of standing next to his grave, watching, devastated, as they lowered his casket into the ground. A woman separated herself from the crowd, leaned down, took me by the arm, and leaned in, close enough so that I could see the lipstick on her teeth and smell her perfume. “You’ll have to be very good now,” she said, somberly. “Your parents are going through a lot.”

I wrote about that scene in my book–apologies to those of you who have read it, for repeating it. I tell that story a lot, in fact, when I’m trying to convey to someone what it’s like to lose a sibling. That story is kind of iconic, because most bereft siblings I’ve ever spoken to have one—usually more than one—like it. It’s as if siblings haven’t experienced a loss—or rather, not a loss that compares with that experienced by parents.

This phenomenon has a name: disenfranchised grief. Grief expert Ken Doka coined it to describe the experience of divorced spouses mourning the loss of ex-partners. They often weren’t considered “legitimate” mourners, and felt shut down and shut out of the loss.

But before long, Doka relealized that the phrase fit a lot of other situations and relationships, too. Cousins. Friends. Gay partners. There are lots of types of losses (miscarriage, for example) and relationships (cousins, friends, grandparents) aren’t deemed legit, enough, somehow to earn the right to mourn.

Siblings, despite the fact that they are, by definition, part of the nuclear family, often fall into this group, too. “The sibling relationship, wherever it is in the life cycle, is just very easy to neglect,” said Doka, when I interviewed him.

And hence the problem for many bereft siblings—because we aren’t seen as real mourners, and given permission to mourn, because we are seen primarily as the caretaker of others…we don’t mourn.

That was certainly my story. Anyone else?

Tags: ,

Elizabeth DeVita-Raeburn

Elizabeth DeVita-Raeburn is the author of The Empty Room: Surviving Sibling Loss, a memoir and journalistic exploration of sibling loss. Her brother, Ted, suffered from a rare immune deficiency disorder and spent 8 years in an isolation room behind a plastic curtain before he died. He was one of two boys upon whom the movie “The Boy in the Plastic Bubble” was based. She is a contributing writer for More magazine, and has also written for Self, Discover, Psychology Today and Harper’s Bazaar, among other publications. Elizabeth is currently working on a new book, The Death of Cancer, with her father, Dr. Vincent T. DeVita. She lives in New York City with her husband, writer Paul Raeburn, and her son, Henry. To learn more about Elizabeth and her work go to: www.devitaraeburn.com or visit her blog: www.tedishere.blogspot.com Elizabeth appeared on the radio show “Healing the Grieving Heart” discussing the Death of a Sibling. To hear her interviewed by Dr. Gloria & Dr. Heidi Horsley, click on the following link: www.voiceamericapd.com/health/010157/horsley070705.mp3

More Articles Written by Elizabeth