How to handle a scary diagnosis

It’s tough to know how to talk about a life-threatening illness, whether it’s your own or someone else’s.

When Chiara Riga was diagnosed with stage 4 metastatic breast cancer at 27, she was absolutely stunned. As her feelings morphed into a form of acceptance, Riga tried to live her life according to some semblance of normal — aside from the fact that she was undergoing intensive cancer treatment, barely mustering the energy to get through the day, and managing side effects like painful mouth sores. In retrospect, she realizes that attempting to move on as though nothing had changed didn’t work at all. In fact, it psychologically backfired.

When she was diagnosed, Riga was told she would have another 10 to 15 years if she was lucky and that only 26 percent of women with her diagnosis live past five years. “The biggest emotional struggle has been watching all of my friends and peers go on with their lives — buy homes, have babies, get married — and I feel like I can’t do those things,” says Riga. “Terminal cancer is always going to be something that’s separating me from others.”

September will mark three years since Riga was diagnosed. “There are a lot of people who were there at the beginning, wearing pink, bringing me pink things, who I now haven’t heard from in over a year,” she says. “It doesn’t end when it’s no longer [fresh] news because this is going to be my life. It feels like everyone thinks that I’ve got it settled because I’ve been [navigating] this for so long, when in reality [my life with metastatic cancer] is constantly changing, and still checking in and still making an effort — even however many years in — is still really important.”

It’s common to receive a scary diagnosis. In 2023, roughly 2 million people will be diagnosed with cancer in the US and an estimated 600,000 people will die of the disease. Hundreds of thousands of Americans also face life-threatening diagnoses related to advanced lung, heart, kidney, or liver disease, stroke, and other neurological diseases.

And yet, talking about these diagnoses in a compassionate, supportive, understanding way often presents challenges for everyone involved — both the people who have been diagnosed and those who love them. While their heart may be in the right place, people learning of a loved one’s diagnosis, often due to a feeling of helplessness, offer words that are anything but helpful. “Sometimes I’ll hear patients say, ‘My loved one, my partner, or my family member was so well-intended in telling me what they think I should be doing or why I got cancer, but it wasn’t helpful to me,’” says Valentina Ogaryan, a clinical psychologist at the Simms/Mann Center for Integrative Oncology at the University of California Los Angeles. Meanwhile, people who’ve received a life-threatening diagnosis are facing a bevy of complex emotions and may not know how to ask for what they need — or even know precisely what they need (or want) just yet.

There are ways to thoughtfully discuss and respond to such a diagnosis, whether you’re looking for support from loved ones after receiving news about your own health or you want to be there for someone you care for. Here’s some guidance.

How to talk about a scary diagnosis with friends and family

Who you share information about your diagnosis with as well as the best time to bring it up with them will depend on your individual needs and what feels right to you.

“You need to do what you feel comfortable with at your own pace,” says Meredith Cammarata, an oncology social worker at Memorial Sloan Kettering Cancer Center in New York City. “You don’t necessarily have to immediately start telling everyone if you don’t want to. This is your own life, your own business, your own personal circumstances. It’s okay to pick and choose who you want to tell and who you don’t want to tell.”

In doing so, you can create a support team with whom you feel able to be vulnerable. Conversely, you may also feel alone and isolated because you don’t have people in your life you feel you can rely on or trust with this poignant news, says Cammarata. If that’s the case, it can be helpful to reach out to other people navigating the same diagnosis in your medical community or connect with a mental health professional, she says.

For example, Riga says the “single most helpful thing” for her mental health was making connections within the cancer community, like meeting a mentor with whom she has become close friends through an organization called After Breast Cancer Diagnosis (ABCD) and working with a psycho-oncologist. She also volunteers and advocates with b-present, an organization that provides resources for those supporting adolescents and young adults navigating cancer.

Amri Kibbler, a 48-year-old from Putnam Valley, New York, who was diagnosed with stage 3 colorectal cancer in December 2020, felt that connecting with people in support groups who were in a similar situation “age- and responsibility-wise” was “priceless.” “Community, as a cancer patient and survivor, really makes you feel less alone and makes you feel less afraid,” she says.

Once you’re clear on the people you can really rely on, you may begin to ask for what you need. Cammarata adds, “It’s also normal, however, to feel like you don’t know what you need.”

For this reason, Cammarata says you may find it helpful to say, “I’ve been diagnosed with X and I’m not exactly sure what I need, but I will reach out to you when I need it,” or, depending on preference, “I’d appreciate it if you’d check in on me because I’m not someone who is comfortable reaching out to someone else for support.”

Talk to your doctor and care team about how you can anticipate engaging with your caregivers and loved ones, suggests Cammarata. Questions might include:

• Will treatment require a ride from a family member or friend?
• What side effects might I experience?
• Am I going to be able to drive?
• Am I going to be able to do the cooking?
• Am I going to be able to take my kids to school or sporting events?

You may be someone who can care for yourself physically and take yourself to and from treatments or procedures but who is seeking emotional connection and would like to discuss the diagnosis with family and friends. Or you may need them to show up to handle logistics and not want to discuss what’s going on emotionally. Either way, speaking with your treatment team can help you get clear on which types of support you need most.

At times, you might set definitive boundaries. In 2021, Sacramento, California-based nursing student Rachel Thomas, now 32, was diagnosed with gestational trophoblastic neoplasia, a disease that occurs in early pregnancy, in which cells that would typically develop into the placenta turn into an abnormal — and in some cases cancerous — mass. She recalls being direct with friends and family from the get-go that she didn’t want them to share their hot takes on her diagnosis and treatment.

“I was pretty clear that I didn’t want opinions,” she recalls. “I said, ‘If you don’t have hard data for me, I just don’t have faith in it.’ I think it was a good choice for me, and they respected it.”

What to say — and not say — to a loved one who has received a scary diagnosis

While learning that someone you love is facing a life-threatening diagnosis is no doubt frightening, showing support involves managing your own feelings as opposed to expecting them to. “Check in with yourself, and check in with your own emotions,” says Cammarata, who adds that it’s normal to feel helpless when you’re in this position. “It’s hard to tolerate feeling helpless, and instinctually, it makes people feel like they need to just do something quickly.” Instead, become aware of your own feelings, pause, shore up empathy, and then see how you might be able to be helpful to your loved one, she suggests.

It may be helpful to bear in mind that once patients receive a cancer diagnosis, they can experience an abrupt shift in their sense of self and identity, says Ogaryan. Facing one’s mortality and contending with potential existential distress can be overwhelming, and it can have different implications for the various roles in their lives, she notes. You can be helpful by “being a sounding board, a listening ear, responding compassionately, and giving permission for [your] loved one to share any/all of the emotions and feelings that may arise.”

By making a concerted effort to tune into and follow your loved one’s cues — a valuable step Cammarata recommends taking ongoingly — you’ll note that there are times in which they want to open up and other moments in which they’d prefer not to discuss their experience at all.

“The best thing,” according to Riga, is when her friends ask, “Do you want a solution, or do you just want to vent?” “I think most people want to fix it, but you literally can’t,” she says. “Don’t try to make me feel better. Just validating that what I’m going through sucks is the most important.”

If sharing about their diagnosis seems like the last thing your loved one wants to do, you might say, “I’m here to listen if and when you want to talk,” suggests Cammarata, who adds, “Be mindful that they might not want [their diagnosis] to be a topic of every discussion. They might say, ‘Let’s talk about the news or celebrity gossip.’ They might want to change the topic, and that’s okay, too. It might be a nice reprieve.”

There will be moments in which you may not know what to say at all. When that happens, it is best to admit that, points out Meredith Diamond, a 30-year-old in California who was diagnosed in April with stage 4 nodular sclerosis Hodgkin lymphoma. “I was grateful when people reached out and said, ‘I don’t even know what to say,’ because that feels more appropriate than when people start saying how sorry they are,” she says.

That said, some moments call for simply being present in silence, holding space, and reflectively sitting side by side — something Thomas wishes her loved ones would have done more often.

“It’s helpful to be in the moment with the person,” acknowledges Ogaryan.

Concrete actions are also appreciated. You might note that you’re going to the grocery store and ask if you can pick anything up for your loved one, suggests Cammarata. You might get them a gift card to a store or a restaurant that serves an extensive menu.

Kibbler agrees that useful gifts — such as cute hats, ginger candies to ease nausea that may result from chemotherapy, a cozy sweatshirt to lounge around in, even links to meditations, sound baths, or personalized playlists and photos of the people who care about them — are valued.

However, it’s possible that your loved one might not be able to eat those baked treats or be able to use certain gifts, so when in doubt, ask them, “How can I support you?” or “What do you need right now?” suggests Thomas. “People often hesitate to put that burden on somebody, to tell them what they need,” she says. “But I personally would have preferred to say, ‘This is what I need today’ or ‘Thank you so much for offering to buy us dinner. I’m really in the mood for In-N-Out.’”

Continuing to show up and check in over time is also a must. “In the beginning, there tend to be a lot of check-ins, a lot of ‘how can I help,’ a plethora of support — sometimes so much support, some patients don’t know what to do with it all,” says Cammarata. “And then, treatment goes on. It’s the third month, it’s the sixth month, it’s a year and a half. Patients start to feel isolated because the amount of check-ins slowly starts to decrease.” For that reason, she emphasizes the impact of even a quick text like, “Checking in, how are you doing this week?”

Kibbler wishes she had received more texts like these. “I wished that people had reached out more,” she says. “Any little message of support always made a big difference in my day and how I was feeling. It’s just a very lonely experience. You see the world going on around you [and] remember being sick. You really appreciate any kind of connection with other people that are taking the time to think of you in any which way.”

Avoid platitudes such as, “You’re a warrior,” “F*ck cancer, let’s win the battle,” or “Believe in the power of positive thinking,” all of which make it seem as though attitude is the sole determinant of the disease’s outcome, says Cammarata. And while some people do find strength in these words, they can also exacerbate anxiety and existential distress, she notes. “When you say ‘Be brave, be strong, think positively,’ it unintentionally tells someone how they should cope and how they should feel, and it takes away from that person’s ability to truly describe their own feelings and their own individual experience. Oftentimes I see it leading to patients feeling invalidated and isolated.”

Along the same lines, steer clear of starting a sentence with “at least” (e.g. “at least they caught it when they did,” “at least you don’t need chemotherapy,” or “at least you already have children, a thriving career, a partner, have traveled the world,” etc.), which minimizes your loved one’s experience.

Instead, you might aim to validate that experience, offering words of support that mirror the following examples Thomas wishes she had heard more often from people in her circle:

• “Thank you for sharing with me.”
• “Thank you for trusting me with your story.”
• “I hear you.”
• “That sounds hard.”

Diamond says you’ll also do well to avoid “over-dramatic” statements, such as, “Why does this have to happen to you?” or “This isn’t fair,” “This is the worst thing that could happen.” She explains that these statements feel like people are just trying to say what they think she wants to hear, when in fact all they do is ignite additional anxiety.

Steer clear of telling stories about other people who have dealt with a similar diagnosis, adds Diamond. To her, this has felt overwhelming and as though people want to share their own stories, which only served to further complicate or even minimize her own. “Everyone has their own experience,” she says. “And sometimes, [it] felt like they were telling me how they thought my journey [should] be.” Peppering in other traumatic stories (even when the outcome is a positive one) typically only results in increasing anxiety rather than alleviating it.

Talking about a life-threatening diagnosis presents challenges for everyone involved — especially the person diagnosed. Thoughtfulness is key. Riga recalls casually telling a friend that she had a scan scheduled weeks in advance. “Just before, I got a text [that said] ‘Hey, I’m thinking of you. Don’t feel like you have to share the results, but I just want you to know that I’m wishing [you] the best.’ It’s so simple. It’s the little things, remembering, showing that you care.”

Jessica Zucker is a Los Angeles-based psychologist specializing in reproductive health and the author of I HAD A MISCARRIAGE: A Memoir, a Movement. Her writing has appeared in the New York Times, the Washington Post, the Guardian, New York magazine, and Vogue, among others. Jessica’s second book is due out next year.