Part 1 of 2 Receiving a diagnosis for a serious illness unleashes fluctuating emotions like a rollercoaster that no one wants to be tall enough to ride. If you have been through that or are going through it now, it’s likely you’ve been on the receiving end of well-meaning, but less than helpful comments. Sometimes that’s because people don’t know what to say, and other times, they are too uncomfortable with their own feelings of worry, lack of control, and fear to confront difficult truths. Either way, it can be hard to deal with those types of comments on top of the all-consuming health challenges.
I have been successfully treated for both malignant melanoma and squamous cell carcinoma, and while cancer is just one subset of serious illness, it is currently the second leading cause of death in the United States. According to the Centers for Disease Control and Prevention (CDC), Over 1.6 million people in the United States were reported to have new cases of cancer in 2020, which is the most recent year for which data is available (Cancer Statistics). So, chances are each of us is or will be in a position to need or offer support at some point in our lifetimes.
Throughout the health issues I’ve experienced and witnessed, along with the current testing I’m undergoing for a plasma cell disorder, I’ve heard a variety of supportive and non-supportive comments. As a result, I’ve reached the conclusion that it’s best for me to directly express my needs and concerns to family and friends very early on in the diagnostic process. This is not only empowering during a time when everyone involved is facing a lot of unknowns, but it also helps create the most supportive community of care to surround me as together, we deal with the ups and downs of unique health concerns.
Looking back, I know I have made plenty of “off” comments to people prior to dealing with my own illnesses. But one of the lessons there is seeing ways to be more present and compassionate with myself and with others. With that in mind, the following are some common things people say when someone has a serious illness, along with how that might be interpreted, and suggestions for developing a more authentic, supportive connection.
Comment: “You look great, though!”
Thoughts: This can feel invalidating. Many disabilities, cancers, and serious illnesses are invisible to others, and it can be frustrating to explain that our insides may not match our outsides, and looking well externally doesn’t mean we feel well.
What to say instead: “I’ve been wanting to check in with you. It must be frustrating to deal with an illness that others cannot see.” This shows interest and is validating.
Comment: “Let me know how that goes,” or “Keep me posted.”
Thoughts: A person facing serious illness has a lot on their mind. A LOT. This isn’t about a job interview or an offer on a house. Don’t trivialize a person’s illness and add to an already heavy emotional burden.
What to say instead: “I’d like to check in with you to see how you’re doing. Would that be o.k.?” This is engaging and asks for consent, which gives the recipient control. Asking about the frequency of check-ins can also be a good way to ensure you’re not inadvertently over-communicating or potentially contributing to feelings of loneliness and isolation. Another option is, “Is there someone in your circle who’s managing communication around your health?” If not, consider offering to be that individual, along with “and if not, that’s o.k., too,” which offers choice.
Comment: “You’re so thin,” or “You’ve put on a few pounds.”
Thoughts: Some cancer drugs cause weight changes that can make a person feel self-conscious. And we shouldn’t be commenting on others’ appearances, whether a person is healthy or not.
What to say instead: “I’ve been thinking about you. Can I ask how you’re doing?” This demonstrates care and concern and invites a conversation while giving the person with illness the choice whether to share a health update.
Comment: “I’m going to think positive! Fingers-crossed!”
Thoughts: This can come across as invalidating and dismissive, as if we can wish away illness and is usually indicative of someone’s inability to sit alongside uncomfortable feelings.
What to say instead: “I care about you deeply and want the best possible outcome for you.” This is honest, direct, and creates connections.
Comment: “I know someone who had the same thing you do, and they’re totally fine now.”
Thoughts: No. Just no. If you find yourself starting to tell a “success” story, please stop immediately. No two health situations are exactly alike, and it can feel like the person with illness is not measuring up when things aren’t going as well as they did for the person in your story. Also, centering yourself at a time