‘Your grief is your grief. You can’t compare it to others’

When I’ve asked people what they lost in the past year of pandemic life, the answer often starts the same way.

“I can’t complain.”

“I’m one of the lucky ones.”

“I know I should count my blessings.”

They are, of course, comparing their losses to the loss of life of 2.6 million people around the world during this pandemic, which makes it harder to talk about these smaller losses. Many people have lost precious time with family and friends, or they’ve been forced to cancel travel plans and miss milestone events like graduations and weddings. In the hierarchy of human suffering during the pandemic, a cancelled prom, a lost vacation or missing out on seeing a child’s first steps may not sound like much, but mental health experts say that all loss needs to be acknowledged and grieved.

“People don’t feel like they have the right to grieve,” says Lisa S Zoll, a licensed clinical social worker in Lemoyne, Pennsylvania, who specialises in grief counselling. “A year into this, the losses are piling up. I just had this conversation in my office when this person said, ‘I can’t complain about my grief, because people have it worse.’ But we have to correct that thinking. Your grief is your grief. You can’t compare it to other people’s.”

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A year ago, Georgiana Lotfy was forced to cancel her dream wedding in Joshua Tree, California. She and her partner, Stephen Schullo, had found new love at the age of 72, and they had wanted to celebrate with 55 friends and family members. Instead, they got married in their Rancho Mirage backyard on 21 March, by an officiant who stood 8ft away. Invited guests watched via Facebook Live, the wedding flowers, which had been paid for, were sent to nursing homes, and the caterer delivered the wedding dinner to a local homeless shelter.

“I’ve cried over it,” says Lotfy, who is a licensed psychotherapist. “When we started to think about how we are going to celebrate our anniversary, it just hit me all over again, the sadness of the loss of this beautiful wedding. There’s no ritual for this grief. It’s not like losing a person, but it is a sadness.”

Naming your grief

There is a name for grief that isn’t routinely acknowledged: disenfranchised grief. The term was coined in the 1980s by Kenneth J Doka, a bereavement expert who began studying unacknowledged grief while teaching graduate students at the College of New Rochelle. When the class discussion turned to the death of a spouse, an older student spoke about the lack of social support when her ex-husband died. His new wife was the widow. Her children had lost their father. But she felt she had no standing to grieve for a man with whom she’d gone to high school prom and shared 25 years of her life.

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The conversation prompted Doka to begin studying grief that isn’t acknowledged or supported by social ritual. It can happen when we don’t have a legal tie to the person we lose, as is the case in a romantic affair or after a divorce. When the loss makes others uncomfortable – like a miscarriage or suicide – we might also lack support for our grief. But often disenfranchised grief happens around smaller losses that don’t involve loss of human life, like the loss of a job, a missed career opportunity, the death of a pet or lost time with people we love.

“A constant refrain is, “I don’t have a right to grieve,’” says Doka.

A lost goal

When college campuses shut down a year ago, students were forced to pack up, say quick goodbyes to friends and finish the semester at home. Before the lockdowns, Victoria Marie Addo-Ashong, who grew up in Falls Church, Virginia, had big dreams for her senior track season at Pomona College. After setting a school record in the triple jump and placing fifth in the 2019 NCAA Division III Outdoor Track and Field Championships, she had her eyes set on a national title.

But then Covid arrived, and the 2020 track season was over before it started. “We only had three meets before our season was cancelled,” says Addo-Ashong. “The lack of agency and the complete surprise, it was pretty disheartening. It felt so surreal. It felt like no way this is happening.”

Addo-Ashong, 22, knows other people have lost so much more in the past year, which has made it hard to grieve her own loss. Her senior year was supposed to be the first time her parents saw her compete in a college meet. She also grieves for her teammates and her coaches, who invested so much time and energy into her training.

“We had these big goals together. It was such a disappointment we couldn’t finish it out the way we wanted to,” says Addo-Ashong, who now works in economic consulting in Los Angeles. “I’ve lost a track season, whereas people have lost lives. But it was such a big part of who I was, and who I still am. It’s hard because there’s nothing I could do about it. There was no concrete way to go about mourning the end of a lost track season. Even that sentence sounds stupid now. Whether I won I didn’t really care. I was looking forward to having the chance to try. To compete one more time.”

Missing a chance to help

A year ago, Ginger Nickel’s life in Eugene, Oregon, was full. The 74-year-old retired teacher was volunteering three or four days a week at a local hospital, often accompanied by her white labradoodle, Gryffindor, a trained therapy dog. As part of a No One Dies Alone programme, she would sit with dying patients, some of whom were homeless, with no family at their bedside. Her favourite job was working three-hour shifts as a “cuddler”, holding the babies in the neonatal intensive care unit.

But in March, all hospital volunteers were sent home – there wasn’t enough protective gear available, and the rapid spread of Covid-19 made it too risky to allow volunteers to come and go from the hospital.

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“It was so abrupt. It wasn’t anything I could prepare for,” says Nickel. “I remember I had that same feeling I had when my best friend died. It’s like your day is normal, and you get this news and everything changes. You’re standing around like, well what should I do now? It was really an unsettling feeling. It was almost as if someone had died, and I would not see them again.”

Nickel says she redirected her energy into sewing masks. She donated them to the hospital and to local homeless people, and she even hung them from clotheslines in her front yard for people to take. Often she would find thank you notes clipped to the clothesline where a mask had been.

But she misses the nurses and staff she saw every week for the past 13 years. And it’s still not clear when or if the hospital will bring back volunteer workers.

“I know what I’m going through is nothing like what the families of 500,000 people have gone through,” says Nickel. “But I’m grieving. I lost something. It’s been a year, and I haven’t seen any of them. I know the babies still need to be held.”

Cancelled travel and lost time with grandchildren.

Dr Brian Edwards, 69, a retired physician in Topeka, Kansas, calls himself a “cup half-full kind of guy” who doesn’t like to complain. He and his wife, Ginger, missed out on a lot last year. They had two new grandchildren they weren’t able to see. His daughter got married. They had five cruises planned in 2020 before Covid-19 hit

Edwards also has Alzheimer’s disease, and time is precious to him. His doctors have advised him to “just have fun” while he’s healthy, something that pandemic restrictions have made more difficult.

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“I know my time is limited,” he says. “But I feel our loss is nothing compared to people losing loved ones. Did I ever feel sad? Yes, but that’s not my way, to linger on bad things. I try to think positively. We all have many losses in many ways. Some losses are more important than others. The big thing is, if you have a loss, you should grieve. Nobody can tell you that your feelings are wrong.”

A cancer diagnosis during lockdown

Lockdowns had an immediate financial effect on Annabelle Gurwitch, a Los Angeles writer who lost assignments and speaking engagements. The promotion for her new book, You’re Leaving When?: Adventures in Downward Mobility, has gone virtual. But it was when her child’s graduation from Bard College moved online that she found herself weeping in her backyard. Her child had worked hard and even started a sobriety club on campus.

“I was so proud of them for graduating college in four years,” she says. “David Byrne was supposed to be the speaker. There’s so much suffering going on, and I felt like such a terrible person being upset that I couldn’t go to my kid’s graduation and see David Byrne. That’s low on the suffering level. But damn, we got our kid through four years. The kid got sober during college. Am I allowed to say we were disappointed?”

Around the same time as the graduation, Gurwitch developed a cough. She got a coronavirus test and a chest X-ray, which eventually led to a diagnosis of stage 4 lung cancer. After her cancer diagnosis, Gurwitch started to notice that her friends began to downplay their own struggles and grief. One friend was diagnosed with breast cancer and underwent a double mastectomy, but didn’t want to tell her because she felt like breast cancer was not as bad as lung cancer.

“I had out-cancered her,” says Gurwitch. “It’s terrible to not feel like your suffering has a place.”

A year of lost fertility and a lost marriage

Erin, 38, who asked that her full name not be used to protect her privacy, says she lost another year of fertility during the pandemic lockdowns. After suffering a miscarriage a few years ago, she had been trying to conceive, but her husband didn’t think it was wise to start a pregnancy during a pandemic. “Mother’s Day came, and I was about to turn 38, and it became clear that I don’t have a lot of time left,” she says. “That biological clock – the tick is very loud, and it’s a very real thing.”

Erin says her marriage began to fall apart, and she realised that if she wanted to become a mother, she likely would have to pursue it on her own. She and her husband are now getting a divorce, she’s taking steps to freeze her eggs, and she’s exploring adoption and foster parenting. She says the grief of infertility and miscarriage has only been amplified by pandemic life, as she gets glimpses into people’s family lives via video calls.

“A co-worker, every time we talk, she talks about Lamaze class,” she says. “That’s great for them, but it’s not an OK space for me to say I’m struggling with this. I lost a child. I lost my fertile years. This is an area where I’m really struggling. It’s not something we as a society openly talk about.”

Acknowledging your grief

One of the biggest challenges with disenfranchised grief is getting the person who is suffering to acknowledge the legitimacy of their own grief. Once you accept that your grief is real, there are steps you can take to help you cope.

– Validate the loss. Identify the thing or things you’ve lost this year. “I’ve gotten a number of letters from people who read my book and said, ‘You gave my grief a name,’” says Doka. “There’s power in naming it. It’s a legitimate loss.”

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– Seek support. One of the challenges of disenfranchised grief is that we often suffer in silence. Going to a support group or a therapist or reaching out to friends to talk about your grief is an important step in coping with it. “I think sharing helps because people feel a lot of times with grief, especially disenfranchised grief, they feel alone and isolated,” says Zoll. “They think nobody else is experiencing what they’re experiencing. Someone has to be brave enough to bring it up. When you talk about it, people will say, ‘I’ve been experiencing that too.’”

– Create a ritual. Funerals, memorial services and written obituaries are rituals around death that help us process our loss. Consider creating a ritual that honours your loss. Consider planting a tree, for example, or finding an item that represents your loss, like canceled airline tickets or a wedding invitation, and burying it. Host a pretend prom or graduation ceremony. Some people might want to get a tattoo to memorialise the loss. “What we struggle with is to find meaning in the loss,” says Zoll. “Grief and loss don’t make sense. The rituals are part of finding the meaning.”

– Help someone else. Zoll says small acts of kindness have helped her cope with her own losses during the pandemic. She overheard a woman in a grocery store whose mother had died, and she was making her mother’s favourite meal as a way to honour her. “We waited for them to get to checkout, and we paid for their groceries,” says Zoll. “I wanted her grief narrative to include something nice that happened. When she talks about remembering her mom, she also remembers that someone paid for her groceries.”

– Find small moments of enjoyment. Don’t force yourself to be happy, but try to find things to do that you enjoy. “Joy is a lofty goal,” says Zoll. “Sometimes the best we can do is find moments of enjoyment that are enough of an escape that we get a break.”

Missing small joys

To cope with grief, it’s important that you don’t rank your loss as better or worse than another person’s. RaeAnn Schulte says her first reaction is always to say she hasn’t lost anything during pandemic life. “I thought I was lucky. I haven’t lost a loved one; I haven’t lost a wedding or a graduation or a job; I haven’t lost my health,” she says. “So why do I feel so terrible?”

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she says she started thinking about all the small losses this year, like lost time with family, especially her young nieces and nephews who are changing every day. She misses her co-workers, browsing in bookstores and going to yoga class.

“I’ve lost vacations and concerts and hockey games and festivals,” says Schulte. “And maybe by themselves none of these things matter so much. Certainly in the face of so much grief and loss, I realise how fortunate I am. But what is life if not a collection of small joys? Taken altogether, maybe my loss is not so small after all.”

© The New York Times