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Tell us about your own NPE story to the extent you’re comfortable sharing it.

Seeing only 1% French was the red flag in my initial 23andMe DNA report. I was raised to believe I was significantly French and Norwegian. A few months later I took the Ancestry DNA test to compare from the same database that my sister had used. Those results produced the most shocking and traumatic day of my adult life. I had a half brother appear on my DNA results, and I didn’t have a brother as far as I knew. A trip over to my mother’s house an hour later produced more confusion, dismissal, and a host of secrets started to come out. Apparently, my mother and BF worked together in the 80s and had a one-night stand. My mother never told him she got pregnant and never saw him again, or at least that’s what I’ve been told. My mother still claims she didn’t know to this day. I think the most painful part of finding this out is how my mother, birth father, and newfound family have treated me in the aftermath.

How far into your own journey were you when you started your podcast?

Six weeks after I had my DNA shock I published my first trailer for the podcast calling for NPEs to share their story and giving a launch date of July 2019.

What compelled you to start the podcast?

The only comfort I had in those first few weeks of shock was reading other NPE stories on the forums online. I was nodding along with their written stories and scrolling for hours and hours. I would read aloud parts of other NPE stories to my husband at all hours of the day and night. I wanted to be able to listen to these stories as I walked around the house and did my errands. I knew I couldn’t continue to sit in front of a computer the rest of my life but I wanted to bring the comfort of finding others like me everywhere I went. I searched “NPE” on the podcast platforms and at the time did not find anything like it so decided I would produce my own. I realize now I could have used other terms and certainly found other podcasts with these stories on them, but with my limited knowledge at the time I was unable to find other podcasts.

Did you initially find NPEs very willing to speak out, or did you have to coax people to share?

I have only ever asked one guest. My first one I had to search for on reddit; I was too afraid to ask anyone on the DNA sites because I didn’t want to break the rules and get kicked off if they considered it “self-promotion.” After that I’ve had a pretty steady stream of people who reach out. I’m booked for 22 weeks out. I can only handle about one guest a week at this time because I do everything myself including scheduling, recording, and editing. I’m only a hobbyist—I’m literally learning everything as I go.

I believe stories benefit the teller as well as the audience. From your experience sharing people’s stories, can you talk a little about the ways the stories help the listeners, and the ways telling the stories helps the storytellers?

I know every story I record is sacred. Somebody out there is listening and nodding along in relief. A lurker, or perhaps a new NPE bingeing on stories all night long when they can’t sleep from the overwhelming grief they are experiencing. I get emails from listeners saying they have been listening or bingeing all night long to some of these episodes.

As for the storytellers, I wish I could explain the relief, giddiness, and joy I hear in their voices after I sign off. Some of what they tell me afterwards is pure gold, but of course off the record after I’ve stopped recording. They all sound like a weight has been lifted off their shoulders; sometimes they’re exhausted and yawning. I leave every recording session feeling filled with empathy and love for my fellow NPEs.

Why do you think storytelling and sharing is so important for NPEs?

I don’t think most NPEs receive true understanding and empathy from people. We get it. We can empathize with each other’s heartbreak, confusion, anger, and, sometimes, joy. Finding a community has been life-saving for me in this journey.

In one episode you mentioned that you sought therapy after your NPE discovery. Can you talk about how you chose a therapist and whether it was difficult to find someone who understood NPE issues?

A common mistake adoptive parents make when hearing adult adoptees speak about adoption trauma is discounting their experiences because “times have changed” or their adoptee hasn’t voiced similar feelings. Some parents will straight-up ask their adopted children if they feel the same way and then rest easy when their children deny having similar feelings. Differing details of adoption stories can be used as evidence of irrelevance. Adoptee voices that land as “angry” are often quickly written off as “examples of a bad adoption.”

“Not my adoptee,” is a knee-jerk, defensive response that blinds parents to adoption-related dynamics that may be uncomfortable or painful to consider—especially when everything seems to be going swimmingly in early childhood. This posture, though, discounts the real and proven trauma inherent in adoption, missing an opportunity to fully support adopted children and ultimately benefit from closer, more authentic relationships.

That trauma looks good on you.

One reason it’s so easy to miss signs of adoption trauma is because it can present so well.

Adoptees are unintentionally groomed to be people-pleasers. Once we’ve lost our first mothers to adoption, we can work incredibly hard to win the love of our next mothers. We strive to measure up—doing and saying whatever is needed to keep our adoptive mothers close. This is all unconscious and certainly not meant to be fraudulent. To our brains, running the show, it’s simply a matter of survival. Children need parents, after all, and attachment is our greatest human need, taking priority even over such basics as shelter and food, as explained by child developmental psychologist Dr. Gordon Neufeld.

Don’ t miss the latest in a series of webinars from Right to Know (RTK), a nonprofit organization that advocates for the rights of MPEs (misattributed parentage experiences), including NPEs (not parent expected).

On Sunday, October 18, from 4pm-5:30 EST, the webinar will address mental health issues experienced by MPEs. Moderated by DrPh candidate Sebastiana Gianci, the panel will include Jodi Klugman-Rabb, LMFT, therapist, cohost of the podcast Sex, Lies & The Truth, and creator of the innovative training program Parental Identity Discovery; Cotey Bowman, LPC Associate, creator of the NPE Counseling Collective, and Lynne Weiner Spencer, RN, MA,LP, a therapist specializing in donor conception, adoption, and the experiences of NPEs and MPEs.

Among the topics to be explored are trauma, identity, grief, ambiguous loss, anxiety, and rejection.

In November, the series’ presenter will be Libby Copeland, award-winning author of The Lost Family: How DNA Testing is Upending Who We Are. (Look for our Q & A with the author here.)

And in December, RTK’s webinar features the DNA Geek Leah Larkin, an adoptee and genetic genealogist. If you’d like to attend the upcoming webinar, request the Zoom link at RSVP2RightToKnow.us, and check out RTK’s event page to stay in the loop about upcoming presentations.

If you missed the last webinar, “Understanding the Medical Ramifications in Your DNA Test,” you can watch the recording.

Right to Know, created by Kara Rubinstein Deyerin, Gregory Loy, and Alesia Cohen Weiss, aims to educate the public and professionals about “the complex intersection of genetic information, identity, and family dynamics.” It works, as well, to change laws with respect to related issues, including fertility fraud. Find it on Facebook and on Twitter and Instagram @righttoknowus.

How long did you spend researching and writing The Lost Family?

Altogether, about three years. I first wrote about Alice Collins Plebuch’s fascinating genetic detective story in The Washington Post in early 2017. The response to that story, which was hundreds of emails from other consumers sharing intimate and moving DNA testing stories, convinced me the topic needed to be a book, and I started researching for the proposal soon afterward. But the bulk of the work was done during 2018 and 2019. In The Lost Family, I revisit Alice’s story and tell it much more fully. I was able to travel to Washington State and spend time with her, as well as do historical research going back a hundred years to illuminate her family’s astonishing story. And as I follow her story, I also tell many other tales from people I Interviewed—wrenching, moving stories of how this technology is changing how we see ourselves and how we talk to one another, not to mention how we think about truth and the past.

What so intrigued you initially that you were willing to devote so much time and attention to this issue? Did you realize early on how complex the subject would be?

I was really intrigued by the idea that questions about genetic origins and family could lead individuals, families, and the culture at large to deep explorations of essential human questions about identity, what makes a family, and how we define ethnicity. The science was indeed quite complex, and so were the experiences of people affected by this technology. I got to interview a lot of genetic genealogists about their techniques and the history of the field, and to tour a DNA testing lab and speak with a number of scientists and historians about human genetics and autosomal DNA testing.

Tell me a little bit about your background and how you came to be interested in creating DNAngels, and how you educated yourself about genetic genealogy?

18 years ago, my aunt researched our Tippa family roots back to 1804, when these ancestors first sailed to America from Germany. My father surprised me with a beautiful bound book of this research as a gift, along with the story of how our last name was Americanized to Tippy. I loved sharing this history with my brothers, nieces, and nephews, relishing the sense of identity and family unity it brought me. I guess this is where my interest in genealogy really began.

In the Fall of 2017, I decided to create a similar keepsake of family history for my grandchildren as a Christmas gift. I already had an account with Ancestry, and became familiar with using their data to access all types of records, such as birth, death, census, military, and marriage. It occurred to me the Ancestry DNA tests would include specific information regarding the actual regions of one’s ancestors, so I thought this would be a nice addition to include in their family tree book.

Nothing could have prepared me for what happened next.
Six weeks later, my test results arrived. As someone who loves family research, it was exciting to see so many relatives listed from first to fourth cousins! Searching for familiar names on my father’s side, I was confused as not one could be found. I decided to call a few Tippy family members who I knew for certain had also tested. They logged into their Ancestry account but did not see my results either.

In the back of my mind, the distant memory of a comment made by my uncle surfaced. He once told me my daddy could not father children, so none of his kids were biologically his. I brushed the comment off at the time, as my brown eyes were certainly the same as my father’s, making me confident I was his. Suddenly, my world turned upside down as I feared there may be some truth to what my uncle said.

Life changing events such as grief and trauma have a way of changing relationships, too. Discovering surprise DNA  revelations like an adoption not previously disclosed, donor conception, or misattributed or falsified paternity—known as non-paternal events or not parent expected (NPE)—have been shown to have serious effects on family relationships, often pitting families against one another as secrets are uncovered and motives are questioned. The prevalence of commercial DNA testing in the last ten years made possible the revelation of these secrets, contributed to a surge in grief, identity crises, and conflicts within families, Psychotherapy is catching up to this phenomenon, poised to be a source of support and skill building as clinicians gain training on the unique constellation of conditions these discoveries present. However, recently I heard this play out in the worst way imaginable on a podcast I never listen to, but was forwarded by a shocked friend who wondering what my response would be given my own experience and expertise on the subject.

Dr. Laura Schlessinger is a well-known radio personality  for her “no nonsense” style, per her marketing.  She’s been dispensing advice in a sensational manner for decades, touting her ability to save marriages,  but, surprisingly, her professional help is delivered in a style akin to that of Gordon Ramsey or Simon Cowell. The last time I listened to anything from Dr. Laura

Usually, when we think about people opening a Pandora’s box by taking a direct-to-consumer DNA test, we’re thinking about NPEs (not parent expected)—people who learn through such a test that their parent(s) is not genetically related to them. But now donor-conceived (DC) people are wondering if when they test they’re opening a different sort of Pandora’s box.

The decision in a legal case called Teuscher vs NW Cryobank in January 2020 caused some members of the DC community to pause before spitting into that little vial. If you’re considering a test for you DC child (under the age of 18), it’s important for you to know the ruling should not affect your decision.

First, let’s talk about terms. NPE is used here to broadly to include anyone who learns their parent(s) is not their genetic parent(s). This can be due to donor-conception, adoption, a tryst, or an assault. The term DC is used here because it’s the most widely used, even though the term “donor” conceived is very problematic. Most DC people were not conceived by a donation. Assisted reproduction is an industry. People were paid for their sperm or eggs. A better term hasn’t emerged yet. “Donor” disguises the complex issues that arise from creating a human in this fashion. Maybe “dealer conceived” is better if we try to stick with the DC initials.  But I digress.

A short overview of the facts of the Teuscher case: Danielle Teuscher gave birth to a daughter after conceiving with the use of sperm (Donor #2744) purchased from NW Cryobank. She specifically requested an open ID donor so her child at 18 years old could know who her genetic father was. When her daughter was four, Teuscher purchased a direct-to-consumer DNA test with 23andMe to learn about her daughter’s genetic health factors as well as her ethnicity.

Tell us little about yourself apart from your adoption journey and your podcast/genetic genealogy work?

I am a wife and mother of two. I’m currently on my fifth career. I made my living as an actress/singer for most of my life. That slowed down in my forties, so, needing a creative outlet, I went to beauty school and got a cosmetology license. I’ve always been a genealogy hobbyist, but the advent of direct-to-consumer DNA testing changed my world and heralded a whole new skill set.

And the impossible question: Can you summarize your own adoption journey? 

Always knew I was adopted and was always implicitly aware of the general mismatch between me and my adoptive family. To be clear, that doesn’t mean I didn’t love and appreciate them. It means I spent my life feeling like I was “other” than those around me, and it was emphasized by the general consensus that I should try harder to blend in and not be my own person. I found my biological mother in my early twenties and it was quite uneventful and stress free. My parents were supportive of this effort and even reached out to my biological mother in solidarity.
Years later, after having my own children, I realized I needed to complete my search and began an arduous and often shocking journey into identifying my paternal family. It became an obsession. As has always been my way, if those around me told me that something was impossible, I leaned in to prove otherwise. Being hypervigilant is a common thread among adoptees and it has pretty much dominated my motivations in life. (For the full story, please listen to the first 20 or so episodes of my podcast “CutOff Genes.” Caveat: Genetic genealogy is relatively new and always evolving, and the testing sites update their platforms regularly. That said, some of the earlier episodes may contain content that’s no longer relevant.)

If keeping a secret—or being a secret—feels detrimental to your physical or mental health, it’s not your imagination. The expression “toxic secrets” is neither hyperbole nor a figure of speech. Researchers increasingly are learning that secrets place a profound burden on mental and physical health.

It appears it’s not the secret itself, or the act of concealing it in social situations, but rather the psychic energy it requires that contributes to the burden. It’s a pain that plays out in private. Researchers at Columbia University who have been studying the effect of secrets found that the degree to which secrets affect well-being is related to the frequency with which the mind wanders to them, suggesting that it’s the ruminating about secrets that’s damaging. This was true regardless of the significance or importance of the secret. Any secret frequently and turned over and over in the mind, researchers discovered, diminishes wellbeing. The damage is related to the extent to which a person is preoccupied by a secret. In other words, it’s not keeping secrets that hurts, according to Michael Slepian, PHD, lead researcher of the Columbia studies, “it’s having them.”

And what most causes people to obsess about their secrets? In a study called “Shame, Guilt, and Secrets on the Mind,” published in the journal Emotion, Slepian* and his colleagues surveyed 1,000 participants about feelings of shame and guilt associated with their secrets. They also asked survey responders how often they thought about and concealed their secrets each day in the prior month. Perhaps surprisingly, participants spent less time concealing than they did dwelling on their secrets, and it was shame rather than guilt that caused the greatest amount of daydreaming about secrets.

The 1953 discovery of DNA’s double helix and the 2003 completion of the Human Genome Project not only have transformed medicine but also have led to the advent of direct-to-consumer DNA testing, an unforeseen consequence of which has been that many people who test unearth long-buried family secrets.

I’m one of them. When I was an infant, my parents divorced and my mother disappeared without a trace, so I’m well acquainted with the yearning for an unknown parent. I felt abandoned anew when, 50 years later, a test revealed that I’ve never known either of my genetic parents—that my father wasn’t my father. At the same time, I discovered I’m Italian, not Russian; my family was Catholic, not Jewish; and my fear of the cancers rampant in my father’s family was unfounded.

My story—at least the second chapter—isn’t unique. A 2019 PEW Research Center survey found that 27% of home DNA test users discover unknown close relatives. Of these, those whose tests reveal misattributed parentage are known as NPEs—a name referring to the circumstances of conception—a non-paternity event or not-parent-expected.

These surprising results and their ripple effects illustrate what Libby Copeland, in her new book on the subject, The Lost Family, calls the “profound and disruptive power of DNA testing.”

DNA surprises often appear to cause a great deal of emotional upheaval. Would you describe it as traumatic?

Any surprise can be traumatic, but a DNA surprise raises one of life’s most fundamental questions: Who am I? Your very identity is made up of your memories, your shared stories, and experiences with family and friends. When you find out that something is not true, or not exactly true, it is a major shock to your emotional system.

Would it be accurate to say that people experiencing this kind of trauma don’t always recognize it as trauma? Perhaps they think they’re overreacting or are less capable than others of handling things?

It is easy to tell yourself, “This is no big deal. I should be able to handle this.” But “handling something” is a process. And that process may involve feeling upset and expressing various emotions. Like any trauma, the emotional reactions can come in waves and when you least expect them. You and your family members both may minimize your experience by emphasizing you had good parents, you shouldn’t be upset, or even that you’re being selfish by looking for answers. I tell people that I don’t know what qualifies as an overreaction to news that changes your understanding of your world. Your reaction is not a sign of emotional weakness—it’s a sign that you are in touch with reality enough that you react when reality changes. I suggest you accept your reactions, your feelings, as being there. Accept that they are what you need to feel in the moment. There’s no need to try changing them—that doesn’t work anyway. You need to work through the process.

In 2013, Danielle Teuscher, of Portland, Oregon, gave birth to a daughter, Zoe, who’d been conceived with sperm donated by an “Open ID” donor—a donor who’s open to contact when his donor-conceived offspring turn 18 years of age. Teuscher acquired the sperm from NW Cryobank, a Spokane, Washington sperm bank. Like other children conceived through donor sperm, Zoe not only lacked information about her ethnicity and ancestry, but she also lacked complete access to half of her medical history.

In hopes of learning more about Zoe’s heritage and any health risks she might face, Teuscher ordered a direct-to-consumer DNA test from 23andMe for her daughter. She had not attempted or intended to learn the identity of the donor, but when the results came in, there was apparently a close match on 23andMe who was willing to be contacted by matches. Teuscher sent a simple message through the 23andMe website indicating that the match’s son may be her child’s donor and that she, too, was receptive to contact. The match was puzzled, so Teuscher apologized and moved on. But the matter didn’t end there.

Soon she received a cease and desist letter from NW Cryobank threatening her with a $20,000 legal action for two breaches of a clause in an electronic agreement—one, having given her daughter a DNA test, and the other having contacted the donor’s mother. The letter warned her not to contact the donor or make attempts to discover his identity or background. Further, the sperm bank informed Teuscher that it had rescinded her access to four vials (she has five vials) of gametes that she’d paid for so that she might one day have another child who would be a genetic match to Zoe.

Three NPEs have teamed to form Right to Know (RTK), a nonprofit organization in Washington state to advocate for the rights of NPEs, which it defines broadly as all people directly affected by misattributed parentage, including adoptees, donor-conceived (DC) people, and individuals conceived during an affair, assault, or tryst.

Kara Deyerin, a nonpracticing attorney, Gregory Loy, an active duty Navy human resource manager stationed in Oak Harbor, Washington, and Alesia Weiss, a retired RN and military veteran have outlined and begun to set in motion an aggressive set of initiatives, each based on the fundamental premise—supported by the United Nations Convention on the Rights of the Child—that everyone has the right to know one’s genetic identity.
RTK, says Deyerin, has a two-pronged mission, the first and foremost of which is education—both for the public and NPEs. The organization wants to illuminate the public about what it means to be an NPE and what NPEs experience. It aims to give them a realistic picture of who NPEs are and engender understanding about the complexities of the intersection of genetic information, identity, and family dynamics. At the same time, it seeks to educate NPEs about the emotional and legal issues that may arise in the wake of a DNA surprise and help provide solutions.

When—after learning that the man she believed to be her father was not genetically related—Deyerin investigated her rights as an NPE. She was shocked to realize that she had none. That discovery drove the second part of RTK’s mission: to advocate for NPEs’ rights so that they will have what they need to heal and move forward.

The first step in setting this mission in motion is securing the funds to kickstart its initiatives, so Deyerin, Loy, and Weiss are in the process of seeking grant monies.

In only a year, Blake Gibbins’ YouTube channel “Not Your Orphan” has garnered an enthusiast base of subscribers who tune in for the host’s thoughtful, engaging, and provocative videos about a range of adoption issues from adoptee infantilization to genetic sexual attraction. Gibbins, a queer domestic adoptee and adoptee rights advocate, lives in Colorado and is deep into a self-designed graduate program in child welfare history and contemporary adoptee rights from Vermont’s Goddard College.

“Not Your Orphan,” Gibbins explains, is for “adoptees and allies and all who wish to understand.” And unlike so many conversations about adoption in which adoptee voices are nowhere to be found, “Not Your Orphan” is a place, they say, “where we talk everything adoption from the perspective of those who actually live it.”

Whether focused on how to be a better ally, cognitive dissonance and its place in the discourse on adoption, the gross inequities in the adoption system, or the trauma of family separation, the videos are informative, illuminating, and even—despite the seriousness of the subject matter—amusing. With an easy conversational style and a guileless gaze that connects with the viewer, Gibbins add a surprising intimacy and even the illusion of interactivity to these videos. This disarming presence, combined with deft editing and creative effects, glides viewers through what Gibbins acknowledges are sometimes uncomfortable conversations.

As host, Gibbins is both entertainer and the best kind of teacher, sharing deep knowledge of the history, workings, and abuses of the foster and adoption industry along with welcome dashes of humor and irony and a heap of social justice perspective. These videos, however, are informed not only by historical perspective but, and equally important, also by his lived experience. They’re clear and direct, and variously raw, vulnerable, angry, whimsical, and passionate.

Facebook groups and virtual support groups can be lifesavers, but nothing beats face-to-face time with people who know how you feel and have been where you’ve been. That’s why Erin Cosentino and Cindy McQuay have begun organizing retreats for adoptees, late discovery adoptees, donor conceived people, and NPEs (not parent expected) at which participants can get to know each other and share their experiences in a relaxed setting while learning from experts about the issues that challenge them. It’s not therapy, but it may be equally healing, and undoubtedly more fun.

Since the day that Cosentino, 44, discovered at 42 that her father was not the man who raised her, her mantra has been “Nothing has changed, yet everything has changed.” McQuay, 56, has known her entire life she had been adopted. Both married with children and busy schedules, each devotes considerable time to advocating for people with concerns related to genetic identity and helping searchers look for biological family. And each runs a private Facebook group, Cosentino’s NPE Only: After the Discovery, and McQuay’s Adoptees Only: Found/Reunion The Next Chapter.

Among her advocacy efforts, McQuay, who describes herself as a jack of all trades, helps adoptees locate the forms necessary to obtain original birth certificates (OBCs). A strong voice for adoptee rights, she strives to enlighten non-adoptees about the often unrecognized harsh realities of adoption, helping them understand that “not all adoptions are rainbows and unicorns.” Countering the dominant narrative, she’s quick to point out that adoptees “were not chosen, we were just next in line.”

Learning about family secrets that fracture your sense of identity can be profoundly shocking and destabilizing. If you’ve experienced a powerful emotional blow that’s left you feeling bruised, battered, and off balance, though you may not recognize it as such, what you’re experiencing is trauma. If you’ve been told or you suspect you’re overacting, be assured that feeling traumatized is a completely normal response to an exceedingly distressing event. While many around you may not understand or take seriously your feelings and expect you to brush it off and get over it—trauma isn’t something you just get over. It needs to be acknowledged and addressed, and it may be useful or even necessary to seek professional help that will allow you to move forward with less distress and integrate the experience into your life

Jamie Marich, PhD, a clinical trauma specialist, talks with us about recognizing trauma, understanding its consequences, and helpful strategies. She’s founder of the Institute for Creative Mindfulness and the author of seven books on trauma healing and recovery. Among the approaches she uses with clients are EMDR therapy, mindfulness, yoga, dance, reiki, and expressive arts. She’s led trauma recovery retreats at the Kripalu School for Yoga & Health in Massachusetts’ Berkshire Mountains and at the Esalen Institute in Big Sur, California. Her most recent book, published this year, is Process Not Perfection: Expressive Arts Solutions for Trauma Recovery.

As the new network television season begins this week, adoptees, NPEs (not parent expected or non-parental events), and donor conceived individuals are among the casts of characters on primetime programs. But will the series’ writers and producers bring a level of reality and depth to the depictions or simply exploit their experiences for dramatic purposes without accuracy, nuance, and sensitivity?
On October 2, the first show with a high-concept premise about donor conception premieres on Fox. The plot of “Almost Family” unfolds as it becomes known that renowned fertility doctor Leon Bechley boosted his clinic’s success rate by using his own sperm to help clients conceive—a practice that led to the conception of dozens of children.

While it would appear to be a plot line ripped from recent headlines, the show is based on the Australian Network 10 series “Sisters,” which premiered in October 2017 and may have been inspired by an earlier headline concerning an Indiana fertility doctor who in 2016 was sued for using his own sperm more than 50 times to inseminate patients. The show began streaming as a Netflix Original Series in September 2018.
As in “Sisters,” “Almost Family” focuses on the effect this bombshell has on Bechley’s daughter, Julia, and two women who discover that they were conceived from his sperm. One, Edie Palmer, has been a longtime friend of Julia. The other is a former Olympic athlete, Roxy Doyle.

Both shows purport to be about the redefinition of family and the issues that surface as these sisters face the facts of their conception, navigate the challenges, and encounter an ever-increasing number of siblings.

“Sisters,” with 7 episodes, begins promisingly enough. Dialogue suggests that feelings, experiences, and concerns arising from the characters’ discovery that they not only were donor conceived but conceived with the sperm of a fertility doctor will be on point.

In our society, we engage in age-old rituals that help share the burden of grief after a loss. We hold the hands of the bereaved through services and at gravesites. We send cards and flowers, make donations, and create meal chains. We stand in solidarity and share stories about the lost loved ones to buoy the spirits of those who mourn them. We offer practical and spiritual succor, shoulders to cry on, and a promise of being there for the bereaved when they need us.

Only sometimes we don’t. For losses that fall outside of society’s norms—particularly those linked with something perceived as shameful or socially embarrassing—the rituals are often absent or ignored, the grievers left alone to tend to their wounds, without empathy and support.

Kenneth Doka, PhD, formerly a professor of gerontology and now senior consultant to the Hospice Foundation of America and author of numerous books about grief, coined the term disenfranchised grief in 1987 to describe the sorrow associated with these situations that stand outside society’s norms of “legitimate” loss. It refers to the emotional aftermath of losses that are not acknowledged or validated by others—a solitary state in which individuals are unable to mourn openly and may suffer in silence. They believe—or are made to feel—that they’re not entitled to the ministrations typically provided when bereavement is socially sanctioned, that their losses aren’t worthy of grief, or that their feelings are inappropriate.