By B.K. JacksonIn 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.

Although there are many contexts in which disenfranchised grief may arise, among the most common, as conceptualized by Doka, are when others:

• don’t recognize relationships (such as those involving ex-spouses, same sex partners, or individuals who’d had an extramarital affair);
• don’t acknowledge the loss as being significant (a divorce; the death of an adult sibling; the loss of a child in a stillbirth or a fetus in an abortion or a miscarriage; or the loss of a pet, a job, or one’s health); and
• view the loss as being socially stigmatized (such as suicide, AIDs, substance abuse).

In each case, the grievers have lost a significant relationship as well as the comfort of shared or public mourning and the social embrace that facilitates grieving and helps shoulder the pain.

Grief may be disenfranchised, Doka explains, not only by society but by oneself. People who are suffering may keep their feelings inside, self-disenfranchising themselves. “Sometimes people don’t feel they have a right to grieve. There may be shame or they don’t understand the legitimacy of their own losses,” he says.We recently spoke to Doka about how disenfranchised grief may be experienced by individuals with losses related to genetic identity, family separation, and family secrets. You may be vulnerable to it, he says, if, for example, you:

• find out that a family member is not genetically connected to you;
• discover the identity of your biological father only to find that he’s deceased;
• search for and find biological family members but are rejected by them; or
• you learn of the death of a biological family member who refused contact with you

In each of these cases, Doka observes, you’ve lost a relationship. “It may not be a relationship that you ever had, but you may have lost a fantasy of a relationship you wanted to have.” And when kinship roles are not recognized, he adds, the right to grieve is also not recognized.

Disenfranchised grief also comes into play when secrets prevent open communication, observes Kathleen R. Gilbert, PhD, professor emerita in the department of applied health science, Indiana University School of Public Health-Bloomington and an Association for Death Education and Counseling Fellow in Thanatology (FT). Furthermore, adoptees, donor conceived people, and NPEs (not parent expected or nonparental event) individuals often have fantasies of reconciliation and a desire to understand their origin stories. When they search and find that their biological parents have died or they contact living relatives who are nonresponsive, there’s a lot of grief involved. “A piece of what they need to know is not available,” says Doka. “We like to create stories about ourselves. We want to know where we were born and who raised us, but in some situations the narrative is incomplete.” When you don’t know how you began, he adds, it influences your sense of self, and there’s grief over the loss of identity.

For all these types of losses, it’s a good bet that few will stand with you in any rituals of mourning, because in many cases there are no such rituals. And when there are, such as the funeral of a birthparent with whom you had not reunited—the man who, while married, had an affair with your mother and later ignored your attempt to connect—you may be excluded or made to feel unwelcome. And if the birthfather you never had the opportunity to meet died, it’s not likely friends will acknowledge that you have cause to mourn, let alone send Hallmark cards or drop by with casseroles. It’s even less likely if you’ve only just discovered—at the same time you learned who your birthfather was—that he died some time ago. And there are no rituals for adoptees who mourn the parents they’ve never known and may never know or for donor conceived individuals who can’t locate their donors. In all of these situations, others may never understand your sadness and your sense of loss over someone you didn’t know and something that happened long ago.

You—and those around you—may not believe you have the need or right to grieve for a relationship that never existed, but the loss of the idea, the wish, the hope for a relationship is as painful as the actual loss of a loved one.

“There are losses here,” Gilbert agrees. If you were adopted, for example, she says, “You didn’t have just one loss, you had layer upon layer of losses.” About this grief you experience over not having known your biological family, she says, “You own it, you know it, you feel it. And then you have this social surround—all the people around you looking at you and saying, ‘I know it’s hard, but you should be grateful for everything you have, for having the knowledge you have.” While there’s no reason for adopted individuals to feel gratitude, it’s not only expected but is also believed to erase any pain associated with the adoption experience. “And the thing is,” says Gilbert, “you may be very grateful, but that doesn’t mean you didn’t have a loss.”

Adoptees, furthermore, “are often told how lucky they were to get adopted, so they may feel disenfranchised from being able to mourn the loss of their birth/first parents,” adds JaeRan Kim, PhD, MSW, assistant professor of  social work at the University of Washington Tacoma. And the feelings of donor conceived individuals may similarly be disrespected by those who suggest they not only should not feel loss but should consider themselves fortunate merely to exist.

What does it matter if others don’t understand? Social acknowledgement of losses is important, Gilbert says, because as social animals we require it. “It may be hard-wired into us to have those who support and care for us confirm the reality we’re trying to construct.” We don’t make sense of things ourselves, she explains. “We make sense in a social context. We play off of other people. We think about things and look at other people and see how they react to us.”People experiencing disenfranchised grief, says Doka, “often have manifestations of grief, anger, and guilt and they don’t identify it as such.” To cope with disenfranchised grief, it’s necessary to recognize it. Acknowledge your feelings and understand that they are legitimate—you own them and are entitled to them—and identify them as grief. After this first step, there are no silver bullets, Doka observes, but there are a few self-help strategies that can be useful.When helping clients with disenfranchised grief or other issues, Doka often asks them to examine their own coping abilities. He asks, “’How have you coped with losses in the past? What’s been helpful and what has not?’ My message would be to analyze your historic strength and utilize it, and that’s going to be different for everyone.”Rituals of mourning play a role in helping individuals mourn and integrate the experience of loss into their lives. If you’ve been excluded or prohibited from participating in these rituals and have not been supported in your sorrow, it might be helpful to create what Doka calls a therapeutic ritual. Even If the loss occurred in the past but there wasn’t an opportunity to mourn, it’s not too late to create these healing rituals.

There are several questions you’ll need to ask yourself when devising a ritual, Doka says. First, what is the message associated with the ritual you want to create? For someone who was rejected by a birth parent, “It may be a message of affirmation, just saying, ‘I don’t know why you didn’t have contact with me but thank you for giving me a piece of life, being part of my life.’ Or it may be a ritual of continuity, in which you say, ‘I acknowledge that I’m part of you even if you didn’t acknowledge me.’ It might be a ritual of transition in which you say, “I don’t need your approval or recognition any more. I am who I am and that’s fine.’”

The second question is, what are the elements of your healing ritual—what form will it take? And last, ask yourself whether anyone needs to witness the ritual, and if so, who? In some cases, Doka says, you may want to involve your siblings or your significant other, and in others you might want a broader audience of friends and family.

According to Gilbert, these don’t have to be “rituals with a capital R, but just acts that take you outside of the mundane, give greater meaning, and help you deal with something.” It might be as simple as lighting a candle and saying the name of the person you lost,” she says. It can be done privately or in a group, but it has to be something that’s meaningful to you. “It acknowledges that it was a loss, it was real, there’s emotion associated with it, and that that’s okay.” Gilbert remembers when she assigned a class of students to create loss rituals. One student, she recalls, wrote a letter to her father, who had died when she was very young. She went with a friend to a fire pit and burned the sealed letter. As the smoke was rising into the sky she said, “Dad I’m sending this letter to you and it’s coming to you on this smoke.” Another student cooked and enjoyed the favorite meal of someone associated with a loss. It doesn’t necessarily require an audience, says Gilbert, just a sincere intention to create a meaningful acknowledgement.

After you develop and carry out your ritual, it’s helpful, Doka says, to find someone, perhaps a therapist, “who can help you unpack the experience.” Together, he suggests, you can explore how the ritual worked for you and whether it met your needs or whether you need to do something else.Experiencing grief isn’t reason alone to need help. You needn’t seek help because others think you need to “get over it.” People can be uncomfortable with others’ grief, even more so when it’s disenfranchised. When they want you to get over it, what they’re really saying, Gilbert observes, is “‘Stop behaving in a way that makes me uncomfortable. I want you to go back to what I see as normal.’ But your normal is never going to be that normal anymore because you’ve had this loss and its changed reality.”

While others may want to rush you through your grief, you don’t have to operate on any timeline but your own. “Grieving is normal and can take a long time,” says Gilbert. “It can be like a river you fall into. Sometimes you’re drowning and sometimes you’re paddling along with it. It’s not that bad, the water is warm, and you can almost touch the bottom. And that’s okay.”

“Grief is its own being,” agrees Beth Kane, LCSW, a private practitioner in New Jersey. “It’s not something you get over. It’s something you learn to live with, a companion you learn to integrate into your life.” It changes you, she says, “but you learn not to let it define you. That takes whatever time it takes as long as you don’t get swallowed by it.” Healing, she says, no matter what kind, is never a linear process. “It’s a slip and slide, up and down, back and forth, two steps up and one back. We get there eventually, but processing and integration don’t work like a stepladder.” And with grief, “the only two fixed points are the shock and the resolution.” Resolution, she adds, doesn’t mean the pain goes away. It just means we have integrated it and it isn’t as acute as often.”

We’re complex creatures, Gilbert says. “We can’t be happy all the time. That’s okay. That’s where empathy and caring about other people comes from.” According to Kim, “Individuals who experience disenfranchised grief need to be supported by those who acknowledge the great emotional and psychological costs of trying to be ‘strong,’ rather than allowing themselves to mourn.”Disenfranchised grief, because its burden isn’t relieved through the support of others, may be internalized, resulting in what psychologists call complicated grief, or grief that has no resolution. “When we are invalidated, we often suppress our real feelings for fear of being judged, says Kane. This interference with the bereavement process, and disenfranchised grief, she says, can lead to complicated grief, which can cause symptoms such as difficulty with normal daily activities, a sense of purposelessness, longing for the object of the loss, and intense focus on the loss. It also can instigate or exacerbate mental health issues including anxiety, depression, substance abuse, and even PTSD. Worse, those who experience disenfranchised grief may be less likely than others to seek help for fear of being further stigmatized. But a therapist can help individuals get past these fears and dispel the attitudes that prevent them from working through their grief. Kane works with her clients to avoid labeling feelings and emotions as “good, bad, positive, or negative.” “It’s through awareness, acceptance, and support that we can work through them.”

What makes grief complicated and problematic, Gilbert says, is if you can’t function. “If you can’t carry out your day to day functions, if you socially isolate yourself, if you’re using drugs or alcohol to deaden your interaction with the world, if you feel ending your own life would be the best way to deal with what’s ongoing in your life at this time, that’s significant and a point at which you need to be working with someone who’s professional to help you find your way back.”You may find all the care and empathy you need by participating in a support group run by a trained professional. But when grieving is more complicated, professional help may be necessary. It’s important, Gilbert says, to seek help from an expert. Many people who consider themselves grief therapists may not be adequately trained, she says, and may believe helping individuals cope with grief is a matter of educating them about the five stages of grief—a largely discredited concept that’s not research-based and was never intended to apply to loss of loved ones. Look for a therapist, she advises, who’s certified in thanatology (the scientific study of death and practices associated with it) and credentialed by the Association for Death Education and Counseling.

“When people are grieving, they often feel that they’re crazy,” says Gilbert. “It’s helpful to have someone who can tell you that your crazy is normal.” When you think about it, she adds, “If something horrific happens and it knocks you off kilter, if you feel normal you’re kind of crazy.”

By B.K. JacksonWhen family secrets are unveiled by DNA tests or otherwise revealed, the secret discoverers and the secret keepers are faced with thorny decisions about whether to come clean about their secrets or double down on them. For each, the stakes are high. And with secrets related to genetic identity and origin stories, there may be many stakeholders and a ripple effect on many others individuals who might be deeply affected by the maintenance or divulgence of inconvenient truths.

If you’ve discovered, for example, that your mother has kept to herself the fact that you were conceived during a clandestine relationship, uncovering her affair is likely to trigger shock waves not only for you, but also for your social or birth-certificate father, your biological father, and all of their families. It might even affect your relationships with your significant other and your children. This is equally true if you’ve found that you’re a late-discovery adoptee or were donor conceived, the latter widening still further the ripple effect since the size of your biological family is potentially large and the revelations may be ongoing.

You may wrestle continually with whether to “come out” with your story knowing that in doing so, you will “out” someone else and there will be consequences. But because secrets pertaining to your origin story—to your truth—are fundamental and foundational, you may feel you have no choice. To not reveal your genetic identity may make you feel inauthentic or mired in a shame that isn’t yours.

Setting aside the issue of whose secret is it to tell and who has the right to open these hornets’ nests (we’ll get to that in another article), it may be in your best interest—in fact it may be essential to your well-being—to set the record straight. But unshrouding long-hidden truths is likely to trigger a cascade of reactions, including guilt, anger, shame, and feelings of betrayal, among all the parties involved. Whether families will withstand the impact or crack may depend on how the family skeletons are let loose.

The truth, it’s often said, will set you free, but there are ways of allowing the truth to come to light without leaving you with—as the song goes—“nothin’ left to lose.” Being mindful of the potential repercussions and talking about them may help reduce collateral damage.

There’s no right way to go about unburdening oneself of a secret, and when it comes to the consequences, every family is different, says Katy Barbier-Greenland, who studies family secrets as part of a PhD program based in sociology and psychology—Family Secrets, Secret Families. Inspired by the discovery of a major family secret of her own and a resulting fascination with the ways in which identity, secrecy, silence, stigma, taboo, knowledge, and power function in and around families, the project aims to explore how reproductive family secrets—those involving conception and birth—affect people’s lives. These include secret or hidden children, siblings, and half siblings; secret adoptions, surrogacy, donor conceptions; children conceived in ways seen as taboo; and misattributed or unanticipated parentage.

As part of her research, Barbier-Greenland interviewed adults about their secrets to “shed light on what these immensely personal and transformative life experiences mean for people, their identities, and their perspectives on families.” This research will provide a base that professionals can use to support individuals going through these difficult experiences.Barbier-Greenland sketches the two sides of the issue. “The adult child might think, ‘I don’t want to be dishonest anymore. I want to tell my story and begin to create my new identity. I want to search for my biological father and any siblings. I want to tell my kids the truth about our ancestry. I want to start to move on from the harm that secrecy has caused. I don’t want to lie about who I am anymore.” The parent, however, may think, “I don’t want to be exposed. I don’t want things to change. I don’t want to face negative reactions and judgment from others. I don’t want aspects of my private life made public.”

How is it possible to bridge the distance or meet in the middle?

It won’t be easy to move from secrecy to honesty after decades of suppressing the truth—even when there hasn’t been a “web of lies or active deceit and dishonesty,” says Barbier-Greenland.

All of her interviewees expressed the wish that they’d learned about family secrets earlier, “mostly so they could have developed relationships with family members earlier on in their lives and because their lives would have unfolded differently.” Still, they agree, it’s best not to rush into decisions. Preparation and support are key. It’s necessary for both sides to communicate with each other and work through the repercussions of revealing or keeping the secret. Each needs to know what’s at stake for the other and what needs to be overcome.

When debating disclosure of secrets, the determining factor should be more than merely “honesty is the best policy,” says Barbier-Greenland. It’s more complicated, she says, with much more to consider. “Some of my interviewees have spoken with their parents or family members immediately in sensitive and empathic ways and they’ve been able to find a positive way forward; some have tried to do the same but have had families completely shatter and relationships crumble.” It’s difficult to strike a balance, she adds, advising that it’s wise to take time to consider your way forward carefully and avoid making hasty decisions or sudden disclosures.

If there’s a positive relationship, for example, between an adult child who wants to be open about their origin story and a parent who doesn’t, she advises not rushing to disclose the secret. Although she acknowledges that everyone’s story is theirs to tell, she recommends proceeding cautiously and with patience and deliberation. “Given some time to get use to the idea, the secret keeper might be willing to be more open, and together you can find a way to understand each other’s needs and preferences and navigate this difficult time together.”

It would be helpful, she says, for the adult child who wants to be open to consider what’s gone into the secret-keeping—“how many years and how much of the parents’ identity may be wrapped up in this secret—and that unravelling it and sharing it with the world could have an immense impact on the parent.”

Take into account both how much their lives might be changed by opening this secret and be mindful of what the circumstances were in which the truth was hidden. Although sometimes secrets are kept for selfish reasons, says Barbier-Greenland, there are other reasons. “In doing this project, I’ve learned that compassion for secret keepers is of the utmost importance. People keep secrets for so many reasons, and it’s complex. Sometimes they keep secrets out of love, because they were obliged to, or they wanted to protect themselves or someone else.”

Further, societal taboos, stigma, and behavioral expectations might have been very different then than now, she observes.

On the other hand, the secret keepers must recognize that times have changed.

Decades of work concerning adoptees and donor conceived individuals have shown that understanding one’s biogenetic origins is essential to understanding oneself, says Barbier-Greenland. “It’s not everything, but it’s central. Since the 1990s, the literature globally has turned toward and recommended openness rather than secrecy in families and legislative and policy trends have shifted in response.”

Parents need to be aware of the reasons for this shift in understanding and realize that not knowing one’s origin story, or knowing it and not being able to share it, may be devastating. Learning that you aren’t quite who you thought you were and having to create a new identity will be an enormous and often painful hurdle, Barbier-Greenland observes. “Anger, anxiety, sadness, frustration—all these emotions are common, and the effects can be traumatic,” she says. “Discovering a family secret about your birth or conception is a transformative life experience and forces people to rewrite their life stories and reframe their identities and definitions of family. It impacts family relationships and can be utterly profound,” she says. It not only changes how you think about yourself and your future, she adds, but may even change how your children think about themselves and their future.

“People have to deal with the fact that close family members kept a major family secret from them as well as deal with the actual secret itself. This is huge.” Thus, there almost certainly will be trust issues to work through and your relationship can’t help but be affected in some way.

Parents need to be aware, too, that your discovery of a secret surrounding your conception may have been shattering. It’s essential, she says, that they understand both why you need to know the details of the secret and why you may need to share the secret.

“It’s important to acknowledge that the relationships will be affected in some way. It’s quite possible that relationships between other family members will also be affected, and that some families can come together and some will splinter and fall apart after such disclosures. To reduce the possibility of the latter outcome, seek support. A therapist can help you and your parent work together to understand each other’s feelings and viewpoints, to understand the possible repercussions, and talk about how to proceed with dignity and sensitivity.

“You’re not alone,” says Barbier-Greenland. “I encourage everyone in this situation to seek support.” In addition to therapists, genetic genealogists are especially well suited to help, she says, because they have a deep understanding of all sides of these issues. “There are also some great online groups where people can chat with others in similar situations and those who are at different stages in their journey, which can be immensely valuable.”It might be worth considering, Barbier-Greenland says, “that disclosure doesn’t mean shouting it from the rooftops or making a big announcement on social media or at a family gathering.” Instead, you can disclose in stages, giving people time to adjust, telling first a few family members and friends, and then over time others as it seems appropriate or necessary.

Reassuring your parent that you would only ever reveal the secret to appropriate people in sensitive ways is important, she says. While some may disagree with the need to restrict the nature of the revelation or be unwilling to be anything but fully forthcoming, being as sensitive as possible can help preserve relationships and reduce harm.

The parents, says Barbier-Greenland, “would also benefit from some strategies for having a conversation with people if they get approached by family members or others that the adult child has disclosed to. This would help develop their capacity and equip them better,” she says. “It also might help them feel more confident about shifting toward openness and honesty.”

Taking the time to work through things, says Barbier-Greenland, “gives everyone time to process the experience for themselves, ensuring that no one reacts in the moment without considering each other and others in the family. There’s the possibility that with time and work, and professional support, the parent will eventually feel able to support you in revealing the secret to the world.”

She mindful that’s a best-case scenario. In many cases, the discussions can’t be broached because the secret keeper is adamant about maintaining the status quo. And in others, discussions breakdown, resulting in an impasse. In such cases, says Barbier-Greenland, “maintaining secrecy or colluding with deception is not an option for the adult child.” Still, a meaningful conversation and a meeting of the minds, she says, is something to strive for.

To learn more about Barbier-Greenland’s research, see her website and follow her on twitter @KatyBeeGreen.

By B.K. JacksonEveryone knows about the five stages of grief. And therein lies the problem. Introduced in 1969 by Elizabeth Kübler-Ross in her book “On Death and Dying” as a blueprint for the emotional responses experienced by people with terminal illness, the five stages of grief—denial, anger, bargaining, depression, and acceptance—have been applied, or, many argue, misapplied—to the experience of grief. The media touted the stages to such a degree that they became dogma, and now, decades later, they remain influential. They’re recommended by medical professionals to patients and by friend to friend, not only as guide to coping with the loss of a loved one but also as a balm for the emotions associated with any type of loss, whether a romantic breakup or a job termination. All this, despite the fact that there’s no scientific basis for the five stages, even for use with the terminally ill.

While the stages, arguably, may have limited usefulness as a tool in the hands of trained grief therapists and in end-of-life care, their value for helping individuals self-manage grief has been widely overstated and, according to some experts, misrepresented.

“So many people think grief is described by Kübler-Ross’s ideas about the five stages of grief,” says Kathleen R. Gilbert, PhD, professor emerita in the department of applied health science, Indiana University School of Public Health-Bloomington and an Association for Death Education and Counseling fellow in thanatology (FT). “But people don’t do those stages. The concept, she says, was devised by a chaplain who wanted to help people of his faith who were in the process of dying. It wasn’t based on research, she adds, only on his own belief system. Kübler-Ross appropriated the concept and applied it to people experiencing grief related to the loss of loved ones.”

The concept, Gilbert says, “feels real because it seems like such a nice progression. The problem is that we as a species don’t do progression well.” The stages don’t even work with the dying, she adds. “Nobody does it that way, but it feels good to think you’re not going to have to find your own way. But everyone has to find their own way because everyone grieves in their own unique manner.”

Mention the five stages to Pauline Boss, a family therapist, educator, and expert on loss—as we did in an interview—and she simply says, “Oh please!” She points out that “in Kübler-Ross’s last book, which unfortunately few people read before she died, she herself said they were meant for the person who was dying, not for the mourners. And she herself said grief is messy, not linear.”

David Kessler, who, having cowritten two books with Kübler-Ross—“Life Lessons: Two Experts on Death & Dying Teach Us About the Mysteries of Life & Living,” and “On Grief & Grieving: Finding the Meaning of Grief Through the Five Stages of Loss”—acknowledges that during the last 40 years the stages have been misunderstood. Still, in his forthcoming book, “Finding Meaning: The Sixth Stage of Grief”—informed by the loss of his 21-year-old son—he continues to discuss grief in terms of the stages, even delineating a sixth stage—finding meaning. While he describes the five stages as “tools to help us frame and identify what we may be feeling,” he acknowledges, as Kübler-Ross did, that individuals don’t go through these stages in order. It’s a curious statement, though, since a stage, by definition, is a step in a process.

While Kessler agrees that “there’s not a typical response to loss as there is no typical loss,” he characterizes the stages as “responses to loss that many people have.” Yet even that’s a notion in dispute. Although Kessler says the stages were “never meant to help tuck messy emotions into neat packages,” many experts observe that they continue to be “prescribed” exactly for the purpose of compartmentalizing emotions into tidy categories, offering what may be an unreliable road map through grief—one that’s bound to make travelers who don’t experience the stages feel lost and confused. The problem, these experts suggest, is not only that the stages aren’t linear, but that they don’t truly represent the collective experience—because there really is no collective experience.

Numerous critics have noted conceptual weaknesses and over-simplification in the stage concept, some insisting it doesn’t stand up to scientific scrutiny. In 2003, Yale researchers looked at the grieving experience of 233 people, and although they found some aspects were as described by Kübler-Ross, others were not. They also found that the while Kübler-Ross described depression as the most intense of the reactions to grief, the grievers in their study pointed to yearning for their lost loved ones as the most powerful negative effect. And Columbia University psychologist and grief expert George Bonanno disputes the stage theory, suggesting instead that grief is experienced in waves, the severity of which diminishes over time. And in 2011, Ruth Davis Konigsberg argued against the usefulness of the stages in “The Truth About Grief: The Myth of its Five Stages and the New Science of Loss.”

In “Misguided Through the Stages of Grief,” Margaret Stroebe, Henk Schut, and Kathrin Boerner track the rise of Kübler-Ross’s stage theory and the subsequent variations offered by other scholars. In the article, they focus on “emergent lines of argument against stage theory, covering conceptual concerns, lack of empirical validity, its failure to assist in identifying those at risk or with complications, and the potentially negative consequences for bereaved persons themselves,” concluding that the stages miss the mark in each aspect. They argue not only that the steps have no utility, but also that they actually may be harmful to people who do not go through them. The stages, they believe, should be discarded and “relegated to the realms of history.”

If they have so little real value, how did these stages become so deeply accepted and ingrained as to become the gospel of grief? According to Boss, who’s working on a book about the myth of closure, “American society loved the five stages because they offer a way to get over it, to find closure, which is a very American idea,” she says. “You don’t hear people from Latin American, Mexico, or Asia ever talk about that. They don’t see it as necessary to have closure.” The idea that we need to get over loss and move on, Boss believes, is a uniquely North American idea.

So, what do you need to know about the five stages of grief? Forget about them. The steps are appealing because they offer comforting guideposts to the unknown and promise order and predictability. But grief is neither orderly nor predictable. Columbia University’s Center for Complicated Grief characterizes typical grief in simpler terms, dividing the experience into acute grief and integrated grief. The former is the intense experience of sorrow and yearning that overshadows an individual in the immediate aftermath of a loss. It may be accompanied by difficult emotions including guilt, anger, and anxiety. Integrated grief is the grief we live with and fold into our lives; it takes up less space but doesn’t disappear. Not a typical reaction to loss, complicated grief is when acute grief persists and continues to overshadow one’s life, interferes with normal life, and results in dysfunctional beliefs and behaviors.

If your feelings threaten to overwhelm you, it’s wise to seek help from a trained grief therapist, preferably one certified in thanatology (the scientific study of death and practices associated with it) and credentialed by the Association for Death Education and Counseling. A therapist can help even when grief isn’t all-consuming. If, however, you’re wading through so-called normal grief alone, remember that the use of words like “journey” and “path” don’t suggest there’s an endpoint. Grief is ongoing, meandering. It may be universal, but it’s not universally experienced. Your journey will be unique. There’s no timeline and you don’t need a map. You’ll find your own way, and it will take as long as it takes.

Whether it arises from the death of a loved one, the loss of a genetic identity, or rejection by birth family—grief is a wild, unpredictable tumbleweed and you’re along for the ride.

By Kara Rubinstein DeyerinIt’s been about 18 months since I discovered the man on my birth certificate was not my biological father and I joined the growing tribe of people who are lucky enough to call themselves NPEs, or Not Parent Expected. I thought once I discovered who my biological father was and had time to process my feelings, I’d be able to put this NPE nonsense behind me. It took me about six months to be sure I’d found the man behind half of my genes. I gave myself another six months to let it all sink in and then, I hoped, everything would return to how it was before my DNA surprise.

Great, I thought, let’s wrap that rollercoaster ride up, stuff it in a box, put it in the deep recesses of my mind, and slam the door shut. I processed. It was time to move on. But I couldn’t. When my best friend died of cancer 15 years ago, I was eventually able to work through my grief. She’s still in my heart, and sometimes something reminds me of her and I smile. Smile! With my NPE status, I compressed all of those emotions and tried to consider myself “over it.” But it wasn’t working, I still couldn’t smile about it.

In DNA NPE Friends, an NPE Facebook support group, a fellow NPE asked everyone to list just one word to describe how they feel about their NPE experience at that moment. The emotions you feel when you discover you’re an NPE are intense and change over time. I tallied the more than 600 responses and generated a word cloud.

What struck me most was the number one feeling—lost. As soon as you realize you’re an NPE, you lose your tether to the world. To the family you grew up with. To the person you were just moments before. You are adrift. You are confused and overwhelmed. I remember reading a description of an experience in the “Twilight Series” that reminds me of what it’s like to discover you’re an NPE. In “Breaking Dawn,” Jacob describes what it feels like to “imprint” on Bella and Edward’s baby daughter Renesmee the first time he sees her. “Everything that made me who I was—my love for [Bella], my love for my father, my loyalty to my pack, the love for my other brothers, my hatred for my enemies, my home, my name, my self—disconnected from me in that second—snip, snip, snip—and floated up into space.”

For Jacob, seconds after he’s adrift, millions of new cables immediately chain him to his new center, Renesmee. When my NPE status was new, I was afraid I might float away. I felt alone, confused, and overwhelmed. As I considered my name, who my pack was, what it meant to have a different biological father, other emotions bubbled to the surface: cheated, betrayed, anger. I thought about all the times I didn’t fit it and now I knew why. Feelings of truth, vindication, and validation were added to the mix. Rejection was next as I reached out to my new family, only to be told they did not want contact. As an NPE, I’ve had to work hard to retie many of my lines and I still am. In rebuilding my identity with the information my DNA surprise imposed on me, I’ve also added loved, supported, and awakened to the list of my NPE emotions.

Even after you’ve remade your connections and feel tethered to the world again—this may take days, weeks, or months—there are still those terrifying moments when something reminds you of your NPE status. In an instant, you lose your grip and find yourself lost or overwhelmed again. It’s funny the things that may send you spiraling: someone mentions adoption, you have to check your race on a box, father’s day, a photograph, a memory . . .

I now understand I will never be “over” being an NPE. This is something I will carry with me for the rest of my life. My NPE status will forever be part of the definition of who I am. Sometimes I will have rough days, but the ties connecting me to my world are now stronger than they ever were before. I feel reborn.

Oh, in case you’re wondering, Monochopsis means the subtle but persistent feeling of being out of place.At age 44 through over-the-counter DNA testing, Kara Rubinstein Deyerin discovered she wasn’t half black but Jewish. She’s an NPE (not parent expected), mom, wife, writer, cook, knitter, and connoisseur of all things human. Follow her on Twitter @UnexpectedlyJ and look for her blog, Unexpectedly Jewish in Seattle.

Look for more essays on various aspects of genetic identity here. Do you have a story to share? We want to hear from you. Find our submission guidelines here.

By AllyI suppose my story begins once my parents realized having a baby wasn’t going to be as easy as everyone makes it out to be. Infertility is a weight on the soul, a burden that my parents carried for ten years while they tried to have me, or whatever version of me would have existed had they been able to use their own gametes.

Here I am now, my parent’s daughter, though not wholly. My parents resorted to using a sperm donor. The only people who knew about my genetic roots were my parents and the doctor who performed the artificial insemination. The burden of infertility transformed into the burden of a secret, one they kept for 28 years until an AncestryDNA test ratted them out. That’s the rub, I think, for many donor conceived adults who find out late in life they had been donor conceived. Why lie? Why keep a material fact about a child’s identity hidden from the world? I blame the infertility burden. I picture it as a force pressing down on my father’s lungs whenever he heard comments that my eyes looked just like his late father’s. I imagine it, too, as something that squeezed my mother’s jaw shut every time a pediatrician asked about family medical history.

If I had closed my eyes tight on the day my parents explained to me everything they knew and remembered about my conception, I might have been able to feel their burden roll off of their backs and onto mine. The weight of my new reality isn’t eased by the fact that I have since located 14 half-siblings and the man my parents used as a donor.

I feel it every time I go to a new doctor who asks about family medical history. It’s ironic that now—as my new doctors are gynecologists, fertility specialists, and genetic counselors—I, too, am shouldering the weight of living a childless life when I so desperately wish to be a parent.

I feel it when I grow tired of telling my story again and again. Like a top starting to wobble after it’s been spinning for a while, I’m running out of steam. “Yes, my parents used a sperm donor. Yes, I know who he is. Yes, I know my dad is still my dad. Yes, crazy, I agree.”

I really feel it when I look at my aunts, uncles and cousins who likely don’t know we aren’t genetically related. I know I could tell them—it’s my story to tell now—but there’s another burden: I want to be seen as my dad’s daughter, wholly and genetically. There are the questions they’ll ask, the relationships that will change, and the nagging feeling that maybe I don’t belong.

It’s an emotional burden, without question. There are days when I can’t help but say out loud “I wish I were my dad’s daughter.” There are days when I’m captivated by the gut-punch stories of other donor conceived adults, especially those who didn’t have the idyllic childhood I enjoyed.

My parents aren’t narcissists. They didn’t keep this secret from me to hurt me or as a way to bury their heads in the sand. I’m allowed to say that because I know who they are at their core. My parents have fiercely loved and protected me for 39 years (I’m 29 now, but I will add in the 10 years when they tried and tried to get pregnant). They have nurtured me, supported me, laughed and cried with me. I know how they love me, and thus I blame their secret-keeping on that massive burden of infertility grief and shame. They shouldered that weight so I wouldn’t have to. A part of me is really grateful for that. I enjoyed 28 years of white-picket-fence life without having to wonder about half of my DNA.

I don’t want to think about it in terms of it now being my turn to carry the burden of infertility and donor conception grief and shame, but I do think I’m in a place to chip away at that weight, to lessen it for myself and for my future children. In the seven months since I’ve found out, I’ve spoken to dozens of donor conceived adults about their truth and their stories. I’ve made real connections with intended and recipient parents, spoken with several counselors, and shared my story, semi-anonymously, with an audience of thousands. I talk to my parents about questions I have, both around my conception story and my newfound infertility issues. While I do still have some dark days, the trend is upward, lighter, and heading in the direction of a reality without the weight of a decades-old secret.Ally, who hosts the Half of Me podcast about donor conception, is a 29-year-old teacher living in New Jersey with her husband. She’s located 14 half siblings. Find her on Instagram. 

Look for more essays on various aspects of genetic identity here. Do you have a story to share? We want to hear from you. Find our submission guidelines here.

By Amanda SerenyiFrom age four, when Mom began nursing school, whenever she saw the tops of my bare feet or the inside of my arms where my skin was nearly translucent and the blue veins running underneath looked like inky branches in a milky sky, she’d say something like, “Those veins! I’d love to practice starting an IV on you.” She might as well have asked to amputate my foot. The thought of needles piercing my skin made me involuntarily curl into a ball and turn my hands into a living turtleneck to protect my exposed neck and inner elbows.

Mom and Dad gave blood routinely when I was little. I would go with them to the blood bank, first as a family, then individually with each after the divorce. Inevitably, I would be the one lying down on one of those sky-blue leather recliners with orange juice and a cookie offered to me, to prevent me, the person who was not giving blood, from passing out. I’d love to say it was all a ploy for free cookies and juice, but I wasn’t talented enough to fake draining all the color from my own face.

What I remembered from those blood bank visits was that both of my parents were blood type A+. Thinking in report-card-terms, it didn’t get any better than that.

In seventh grade biology, our teacher, Mr. Hayes, required all students to poke a finger and type their blood in order to get an A in the class. My grade depended on the needle prick, so I relented, but was too afraid of the tears that would flow in front of my classmates to do it during regular hours. I was the know-it-all in class who aced every assignment and test. Showing a weakness was not an option.

Mom came in after school to help restrain and calm me. While I panted with my eyes squeezed shut, she held my hand down while Mr. Hayes stabbed my index finger. I felt Mom tip my finger over onto a glass microscope slide. She put a band-aid over the puncture site while Mr. Hayes dropped a little solution on the blood confirming what logic already told me: My blood type was A. We didn’t test for the Rh factor (the + or -).

According to the Red Cross website, among Caucasians, like me, the most common blood type is O, with 37% O+ and 8% O-. The next most common blood type is A with 33% A+ and 7% A-. Type B is rare, with only 11% including + and -, and Type AB is only 4%. If I were Type A, then, given my parents’ types and the breakdown of + and -, the odds were overwhelmingly in my favor that I was A+. Perfect.

For our first married Valentine’s Day, I ordered a matching set of Road IDs for my husband Denis and me. They were a sporty, modern version of medical ID bracelets. Each small metal plate was threaded on a piece of Velcro, meant to loop through shoe laces.  Mine included my name, address, Den’s name and phone number, and my blood type. It tickled me to see my new married name etched in metal, both on my own tag and as the emergency contact on his. Being an overachiever and former straight-A student, I also enjoyed seeing my blood type, A+, declared proudly.

As weekend warriors, we spent Sundays and warm evenings running and biking on the paved rails-to-trails paths near our home. We wore our amulets of safety to ward off catastrophe for a year or so before they found a new home in our entryway table, where they rattled amongst unlabeled keys, orphan batteries, and crossed-off to-do lists. The novelty of my new name and the protection our new union seemed to need had worn off.

Years later, when learned I was donor-conceived, I turned to 23andMe for any health- and ancestry-related answers I could find. After finding my biological father and half-brother, I reviewed the Health Tools section to see what else I could learn. My results indicated that my blood type was probably A, and my Rh factor was probably negative. I was probably A-. I tried not to think of this in terms of being 100% (A+ grade) vs. 92% (A- grade), but it was hard not to feel like something in my sense of self had loosened, lessened.

When my big toe swelled to the size of a lime after a competitive yoga class, my doctor had two concerns: a broken toe and gout. An x-ray was required to rule out a break. A blood test would rule out gout. My stomach somersaulted in dread. I turtled my limbs into the protection of the billowing dressing gown.

“Can you add blood typing on top of the gout test?” I asked my doctor.

“You know, the best way to determine your blood type is to donate blood,” he said.

“That’s not an option for me,” I said.

I begged.

He relented.

When my results arrived, I texted Mom: “Did you ever have my blood typed?”

“I’m pretty sure your blood was typed as a pre-op when you were little,” she wrote.  “Not because it was needed, but just so I would know. You were the same type as me. A+.”

“I’m A-,” I wrote.

“Really? I don’t remember that,” she wrote. “Aunt Theresa is also A-.”

Oh, well, as long as someone else has the same blood type, then being wrong about it all these years is fine, my inner snark snarled, still miffed that my donor-conception had been kept from me for 33 years.

“I’m pretty sure I would have remembered if someone told me you were A-,” she wrote.  “I wonder if it was typed wrong in the past? Didn’t you give blood once?”

“No,” I wrote. “Too afraid of needles.” How could she not know this about me after all these years?

It’s such a minor detail, one’s blood type, until it isn’t. It’s doesn’t affect me on a daily basis, but it’s part of me. The most frustrating part is it’s one more thing that I thought was one way before I found out I was donor-conceived, but now is something else. Just like “I used to be Irish-Italian” back when I thought I was related to my great-grandfather born in Dublin and great-grandmother born along the Italian/Swiss border. That Irish-Italian half has been replaced by a Jewish half. What else have I been mistaken about all these years?

After Mom involuntarily told me I was donor-conceived, I was frustrated at not knowing half of my genes, my family, and myself. She asked, “Why does it matter? Nothing has really changed. You are who you are.” That attitude works if you really know who you are and are comfortable with who that person is. It’s easy to shrug off minor pebbles tossed at your armor. Finding out I was donor-conceived stripped away any defenses I thought I had. My raw flesh was exposed and every minor pebble thrown my way felt like a flaming cannonball.

I’m grateful to have never needed to know my blood type for an emergency. I’m grateful to have never had to rely on the Road IDs since mine wasn’t accurate anyway. There will come a time when I will need to have key information about myself, or Denis will need to have it. I just hope when that day comes, I will have finished piecing together the mysterious parts of me. Until I feel whole and fully knowledgeable about myself again, I’ll keep searching for the little clues that help define me from the inside out. A- wasn’t a death sentence. It just meant there was room for improvement.Amanda Serenyi lives with her husband and dog in San Francisco.  She’s working on a memoir, “Family of Strangers,” about rediscovering notions of family after learning at age 33 she was donor conceived. Learn more about her at at her website.  

Look for more essays on various aspects of genetic identity here. Do you have a story to share? We want to hear from you. Find our submission guidelines here.

By Jonathan S. PollackI consider myself one of the fortunate ones.

I learned after taking a DNA test in January 2018 at age 41 that I was donor conceived. After corresponding with two half-siblings the day I received my test results and talking with my mother the next morning, it became painfully obvious my mother was a recipient of donor sperm and that my late father wasn’t the sperm donor. As part of the medical treatment for my parents’ infertility, my mother explained, doctors suggested mixing my father’s sperm with that of an anonymous donor—the only type available at the time of my conception. While these doctors didn’t advise my parents not to say anything about this to the child they would have, they didn’t encourage them to say anything either.

In an instant, I realized I wasn’t biologically related to my father or his entire side of the family I grew up with—grandparents, an aunt, and many cousins. To have this sudden realization in adulthood was traumatic. Learning about my truth changed nothing and everything in an instant. Learning I was donor-conceived had a sudden impact on my identity and will continue to affect me for the remainder of my life—in ways both good and bad.

I channeled my shock, grief, and anger into action. Within 24 hours of learning that my parents used an anonymous sperm donor to conceive, I used my DNA matches to identify my biological father. I shared that information with the half-siblings I’d been in contact with, and we all searched for photos online until we found the right picture, one of a present-day doctor who once was a medical student at a school affiliated with the hospital where we were conceived. I stared into the mirror, unsure of who was staring back at me as I searched the photo for physical similarities with this complete stranger who made up half of me. Within a week, I’d sent my biological father an email message to his workplace requesting contact about a personal matter. Impatiently, a few days later I sent another email to a different address I found, including details of what I’d learned and asking for confirmation that he had been an anonymous sperm donor.

While the months passed with no response, I discovered and connected with more half-siblings. (At this time, I’m one of eleven half-siblings.) I got involved in the online donor-conceived community by becoming a member, and eventually a co-administrator, of the Facebook group We Are Donor Conceived, and I reached out to distant family members for any information I could get about my immediate biological family. I believed my email messages hadn’t gotten through to my biological father or had been viewed as spam, so I sent a letter to his home address. While I waited to hear from him, I spent months building a family tree, researching his—my—family, learning what ailments family members died of and at what ages, gathering addresses and phone numbers, and trying to fit together these puzzle pieces to make sense of myself.

I didn’t choose to be a product of anonymous donor conception, and the choices made by others had a devastating effect on my sense of self as soon as I became aware of them. Family members suggested that my interest in my biological family and my perseverance in trying to learn about it had become unhealthy, but I did what I had to do to make sense of the situation I found myself in and to mend my newly fractured identity.

After three months of deliberation, my biological father still hadn’t responded. I contacted my half-brother Paul (not his real name)—the son my biological father and his wife raised. Well over the age of majority, he’d taken a DNA test before I had and was listed as a genetic match. When after several months Paul hadn’t responded, I reached out to his wife via Instagram, and she told him that I’d sent him a note. When Paul finally saw and returned my message, we set up a call and talked for hours. I told him what I knew, and he acknowledge that the shared DNA percentages demonstrated that we were half siblings and that his father was my parents’ anonymous sperm donor.

Within a week, Paul let me know that our father confirmed to him that he’d participated in the sperm donation program that led to my creation in the mid-1970s. Paul freely shared a family medical history and told me a bit about our father (or, as he likes to write, “my father/your father/our father”) and said he would ask him to contact me. Still, my letters to my biological father remained unanswered.

In March 2019, fourteen months after I first learned that I was donor conceived and about six months after talking with Paul, I drove eight hours to meet him and his wife. We ate and drank and talked for a solid twelve hours. Paul’s wife took the obligatory photo of me giving a noogie to my youngest half-brother. Late that night, Paul texted me to see if I would like our father and his wife to join us for brunch the next morning. I’m not privy to the conversations that took place behind the scenes, but I am grateful to everyone who helped my biological father overcome any hurdles he faced and be willing to meet.

I can’t adequately put into words the feeling of seeing, for the first time, someone who is half of me. I stared at my biological father and he stared back at me. My nerves—and, I imagine, his—were on edge. I look like him. His mannerisms are familiar. His dry sense of humor is mine. Our hands are the same size. We both have great memories. Our meeting was uncomfortable and amazing and surreal and revelatory all at the same time. We’ve since met once more, along with a few of my half-siblings who were also donor-conceived—his biological children. None of us expects or wants a parent-child relationship with our biological father. For me, that relationship is reserved for the father who raised me. For my biological father, that type of relationship is reserved for Paul, the son he raised. But I now have access to the person who gave me half of my DNA, which is what I sought; I can’t overstate how important that is to me.

Of all possible outcomes, mine is generally considered favorable by donor conceived people.

I’m fortunate that my relationship with my mother, strained for more than a year, is mended. I’ve come to understand her motivations and actions, and she understands mine.

I’m fortunate that my biological father’s wife and Paul were forces working to help him through this tricky business of unmasking anonymity. So many donor-conceived people are refused contact or cut off after initial contact by those close to their biological parents who fear contact will threaten their relationships. I will be forever grateful that my biological and extended family has been, and continues to be, so open to the possibilities.

I’m fortunate that I have half-siblings who are open to contact and to meeting, including Paul. We communicate regularly, and it’s strangely familiar and unforced. Our interests and personalities overlap in fascinating ways.

I’m fortunate that, despite anonymity intentionally separating me from my family and keeping me for so long unaware of my biological roots—and despite the difficult social situations that result from donor conception and the secrecy that can surround it—I’ve been able to meet and forge some kind of a curious relationship with my biological father. I look forward to seeing where it leads.Jonathan Pollack is a freelance photographer who specializes in food and restaurant photography as well as large life events. He uses his photography skills and computer science background to help his wife Stefani run Cupcake Project, her baking blog and social media destination. He and Stefani live in St. Louis, Missouri, with their wonderful son and egg-providing pet chickens. Pollack enjoys spending time with farm animals on photoshoots.