When Katie Thurston was diagnosed with Stage IV metastatic breast cancer earlier this year, at age 34, people kept telling her they knew someone with the same diagnosis. Solidarity, you might think. A helpful way to relate. Not exactly: Their friend or family member had died.
This scenario is “pretty recurring,” says Thurston, who starred on season 17 of The Bachelorette, and while people have good intentions—they want you to know they have experience with what you’re going through—the remark doesn’t land well. “We understand that death is a possibility in this diagnosis,” she says. “I don’t need to hear that.”
Thurston has been on the receiving end of a lot of outreach and opinions since she shared her breast cancer diagnosis—from strangers online, as well as people she knows in real life. While death-related stories are particularly painful, there are plenty of other comments that fall short of helpful.
Communication slip-ups in this area are common, experts say. When a loved one is diagnosed with cancer, people often struggle to figure out how to express their support, leading them to trip over their words or hold back from saying anything at all. “The data I have to back that up is all the people in my office who say, ‘People don’t know how to talk to me,’” says Felicity Harper, a clinical psychologist at Karmanos Cancer Institute in Detroit. “It’s very difficult, unless you’ve been through it or have some frame of reference, to really know what to say. You don’t want to say the wrong thing, but you don’t know what the right thing is.”
Here’s what to avoid when you’re talking to someone diagnosed with cancer—and what to say instead.
Make real and meaningful contact
When you hear about a friend or family member’s diagnosis, you might default to saying how sorry you are. “They’re going to hear that a million times,” Harper says. But “no one is sorrier to hear that they were diagnosed with cancer than the cancer patients themselves.”
Instead, she recommends phrasing your message like this: “I heard about your diagnosis. I’m thinking of you, and I’m here for you.” It’s also helpful to add that you don’t expect a response—or to simply prepare yourself not to receive one. “If you’re sick and you get all these cards or texts, it makes you feel wonderful, but you also don’t want the pressure of having to respond to everybody,” Harper says. If you haven’t heard back, “reach out again in another couple weeks or a month. It’s just being consistent.”
Don’t respond with toxic positivity
The No. 1 complaint Harper hears from cancer patients is that other people try to tell them how to feel—and it inevitably involves thinking positively. “You’re going to beat this!” they might say. “Don’t worry. You just have to stay positive.” People often assure Thurston that everything happens for a reason or promise that everything will be OK. “It almost belittles the reality and emotions that a cancer patient is going through,” she says.
Having cancer means tackling a range of emotions, sometimes all within the same hour: anxiety, fear, hope, uncertainty, disappointment, and anger, just for starters. “When someone is having a hard time, our inclination is often to want to fix things and say, ‘Oh, don’t feel bad,’ when really what they need is space to feel their feelings,” Harper says. The patients she sees often tell her that they feel like they’re doing their cancer experience wrong because they can’t stay positive—which makes them feel guilty, or like they’re failing. That’s exacerbated by comments like, “If you just thought positively, you’d be doing better,” or telling someone that their stress is making them sicker.
Read More: 10 Ways to Respond to Someone’s Bad News
Instead, Harper advises, make it a point to listen without judgment. Rather than invalidating them by downplaying the gravity of the situation, support your loved ones by telling them: “Gosh, that sounds scary. That must be so hard.” Then stick by their side as they experience the whiplash of those ever-changing emotions.
Although it might feel challenging, it’s key to allow your loved one the space to talk freely about whatever they want—even the especially hard stuff. If a cancer patient’s disease reaches an advanced stage, the people closest to them are also scared, so they try to shut down those conversations: “You don’t need to think about your funeral plans.”
“We’ve got to find a way to let that patient talk about it, and maybe that means we need to go talk to somebody about our own feelings,” Harper says. “That’s for us to deal with separately.”
Check before offering advice
People with cancer often get fed up by their loved ones telling them what to do. The word “should” comes up a lot, Harper says: “You should see this doctor! You should try that treatment plan! You should put these supplements on autoship.” Translation: “I don’t trust that you’re getting good care, or that you know enough about what’s best for you.”
In general, it’s a good idea to avoid offering solutions, well-intentioned as they might be. “The thing I always say to patients is, you can tell those people, ‘Look, when you’ve had cancer, you can come back and tell me what to do,’” Harper says. “Until then, the best thing is to allow the patient to be the expert on how they’re feeling,” and the ways they’re managing their disease.
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While unsolicited tips aren’t always welcome, Thurston appreciates when people open a conversation like this: “If you’d like to hear some advice, let me know. Or, if you want help researching any specific topic related to your diagnosis, I’m here.” In other words: “I want to help you get information, but only if you’re ready to accept it or want help researching it.” That makes it much more palatable, she says, and she’s taken loved ones up on the offer.
Avoid a litany of other unhelpful remarks
When the conversation turns to appearance and cancer-related changes, some people say: “It’s just hair. It will grow back.” “But the thing is, it’s just hair until it happens to you,” says Thurston, who’s documenting her medical journey via an Instagram group she dubbed the Boobie Broadcast. “This isn’t a bad haircut. This is a very emotionally and physically difficult time, and we need to be cautious of comments like that.”
Many breast cancer patients undergo a mastectomy, which involves removing all or part of the breast, and can be followed by reconstruction to rebuild the breast shape. Some people pounce on that when making conversation. “I think people try to be optimistic on our behalf, so they’ll say these lighthearted comments like, ‘Oh, at least it’s a free boob job,’” Thurston says. “‘Oh, you get a free tummy tuck.’ And while they mean well, it’s not free. There’s so many consequences—it’s not some vain situation I’m going through. It’s a surgery because of my medical diagnosis.”
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The subject of family planning is also full of landmines. Thurston was vocal about undergoing IVF before beginning treatment as part of her fertility preservation plan. It’s an incredibly sensitive topic, she says, and she’s already heard plenty of unhelpful feedback, like from people who tell her she can always foster or adopt. “A lot goes into IVF, and I don’t know where I’m going to be physically, emotionally, and financially if that doesn’t work out for me,” she says. “To simply say ‘you can always adopt’—it’s not as easy as you’re making it sound, and you’re belittling the entire experience I’m going through when it comes to IVF.”
Thurston recommends letting the person with cancer guide these conversations—and if you do venture into the subject, to ask questions like, “How much do you want to talk about it?” She’s encountered people who are truly sensitive about the situation and, for example, ask if it’s OK if they bring their children to places where she’ll be. “Sometimes it can be triggering to even see a baby,” she says, and when people are cognizant of that, their thoughtfulness goes a long way.
Don’t default to silence
Not everyone says the right thing when they’re trying to support someone who’s just been diagnosed with cancer. But saying anything—even if it’s not perfect—is better than saying nothing at all. “I think people don’t know what to say or they feel uncomfortable, but I’d rather someone stumble on their attempt at talking about it, vs. not saying anything,” Thurston says. “That one hurts the most, and I think people don’t realize it.”
If you’re not sure what to say, tell your friend exactly that. Thurston recommends adding: “I might have difficulties having this conversation. Help me navigate—help me understand.”
Many of Harper’s patients say they learned who their real friends were after they were diagnosed with cancer. Some of the people in their network stepped up and were present; others vanished, perhaps because they didn’t know what to say or didn’t realize their voice would be missed. Checking in matters, Harper stresses, and not just at the beginning of treatment. Once active care ends, “People assume you’re fine, and they never ask about it again,” she says. “But patients deal with the effects of cancer treatment long after the treatment’s over”—not to mention that those who have metastatic disease will need to manage it long term.
Read More: 10 Questions to Help You Plan for the End of Life
If you’re staying mum because you don’t want to pester your friend, reconsider. Thurston suggests directly asking: “Do you want me to check in about your diagnosis? Do you want me to check in about your life? How much are you wanting to have this in front of you, vs. having it be an afterthought?” Talking about cancer is so emotional, she adds, that sometimes she just wants to talk about reality TV, the restaurant she went to last weekend, or her dog—anything else.
Harper counsels patients on how to set boundaries around talking about their disease. Some get in the habit of saying: “I don’t want to talk about it—when I do want to, I’ll bring it up.”
“Sometimes cancer needs to be on the back-burner,” Harper says. “It doesn’t need to be your whole identity—sometimes you just want to remember what your life was like before.”
Offer practical, specific help
If you want to do something to lighten a cancer patient’s load, consider asking the people closest to them—a parent, sibling, or spouse—how you can best be helpful. Word it like this: “The church is thinking about setting up a meal train for the family. Is that something you think would be good?”
Aim to offer practical support, like setting up a fund for gas money, building a wheelchair ramp connected to their front door, providing childcare, or planning a low-key visit once a week, Harper says.
Thurston loves when people make specific offers to help, like telling her they want to provide dinner—and then asking if she’d prefer Thursday or Friday drop-off. Or, someone might reach out and say they’d like to drive her to her next oncology appointment. “Those action items of offering support make such a huge difference,” she says. “To some people, it might feel small, but to a cancer patient, it really makes such a positive impact.”
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