Chelsey Gomez grew up fiercely independent. Her abusive father left her when she was young. She went to college and met her future husband, who had also grown up in a dysfunctional environment, when they were just 14 years old.

“My husband and I grew up together, are close family to each other,” Gomez says, and have built our lives and careers.

Yet nothing prepared Gomez for losing her relationships with her best friend at work, and even the younger brother she doted on, after contracting cancer at 28. She shared her diagnosis with them, and — poof! – they disappeared. They stopped calling, stopped texting. They didn’t register.

More than the excruciating bone marrow transplant to deal with Hodgkin lymphomaor the chemotherapy that nearly killed her, Gomez says what hurt her the most was confronting the idea that — to these people she loved — she didn’t matter. “It’s the most painful thing, because you’re sitting there thinking, ‘Oh, I must have been a horrible person,'” Gomez says.

Shock for young patients

What happened to Gomez is common enough that some have coined a term for it: “ghost image of cancer“This social isolation and loss of support – even from close friends and family members – is a devastating and often unrecognized side effect of the disease. Survivors say abandonment creates deeper, more severe scars. take longer to heal than physical damage. particularly shocking for young patientswho have fewer peers who have experienced a serious illness and appreciate its many consequences.

Many, like Gomez, say they feel unprepared for the way the illness — and people’s reactions to it — has rearranged their relationships, gutted their self-esteem and, above all, left them feeling terrible. alone. For a long time, Gomez assumed the problem was her own. “I cried a lot more about that than the cancer, because it’s really shameful to talk about it,” she says. “And so I don’t want to talk about it. I’m ashamed.”

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Gomez is part of a growing population of 18.1 million people facing a relatively new frontier in cancer survivorship. As scientific advances allow more people to live much longer, survival comes with new challenges in later life. One of the main ones is social isolationthat several cancer survivors told NPR was more painful than the treatments themselves.

Six years after diagnosis, Gomez, now 34, has beaten a second wave of cancer and is now in good health. She lives in DeLand, Florida with her husband and their 9-year-old daughter. But the question of why these key people disappeared when she needed them most still eats at her.

“I think that’s one of the things about cancer ghosting: a lot of times you don’t get an explanation from people. They just cut you out of their lives and you never know why.” , she said.

An inability to deal with feelings

Almost all patients have a story of being ghosted by people they are close to, says social worker Carissa Hodgsonwho leads community support programs in Network of light pointsa support group for parents with cancer. The act of disappearing seems like cruelty, she says, but in fact ghosts usually do it because they are unable to deal with their own fears. They are speechless or afraid of offending the patient, she said. Or they cannot face the new possibilities: What if they died? Can I have cancer?

“All these feelings come up in people and they don’t know how to deal with them, so the way they deal with them is to run away,” says Hodgson.

Ashley Levinson, 53, concluded that this is what happened with two of her siblings, who pulled out after telling them she had breast cancer a year ago. One responded on Facebook with a message saying: “Good luck with everything, and see you soon for better health.” The other never responded at all.

Levinson, a single mother of two, says their silence made her feel like a burden and responsible, in some way, for her own illness.

Support can be simple

Fortunately, others intervened in their place. A cousin, her children, and especially a high school friend who was also an oncology nurse, “became the sister of my soul and my heart,” Levinson says.

Levinson, who lives in Mantua, New Jersey, is cancer-free after a year of treatment that included chemotherapy and a double mastectomy. Looking back, she says she didn’t need much from her biological siblings.

“Saying, ‘Hey, are you okay?’ – this confirms that they understand that what you are going through is difficult, and that even if they are not there every day, they will be there when you feel the need to turn to them at your weakest moment.”

Support it doesn’t have to be complicatedsays Arif Kamal, chief patient officer at the American Cancer Society. He says even simple messages like “I’m thinking of you” can really matter. And he says practical support is often best when it’s very specific, like: “I’m going to get a pizza for my family tonight. I’m going to get one for you too. Do you still like pepperoni?”

But Kamal says support can be difficult to maintain, especially when people sometimes survive for decades. “People’s social support, if they have it, will disappear over time,” he says, emphasizing Cancer Society study shows more than half of patients feel socially isolated when they are diagnosed, and even more so during active treatment. “Cancer is a rallying point for some, not for all. But there is an expiration date to that rallying point.”

Connection is an antidote

Florida cancer survivor Chelsey Gomez saw her social circle shrink as people seemed to tire of her illness. Relations with her brother never fully recovered, even after he explained that he had been watching her by questioning their mother. “Every time I see it, I think about it,” she said.

Of other friends who ghosted her, she simply let go: “They don’t exist to me anymore. They really are like a ghost.”

Visual editing by Katie Hayes Luke. Graphics by Juweek Adolphe. Editing by Diane Webber and Carmel Wroth.

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