What Not to Say to Someone Who Just Got A Serious Diagnosis
Ramona Mead | Wednesday Sep. 1st, 2021
If someone shares their recent diagnosis with you, you are important. This is heavy, private stuff. Even if you don’t know the person well, it means they see you as a potential safe space.
With that being said, this isn’t about you. Keep in mind, the purpose of this conversation is to support this newly diagnosed person who is dealing with a crisis, not to make you feel better.
You may be scared or sad about your friend’s diagnosis, that’s okay. If you need to process your feelings, talk to someone else. If you don’t know anything about the condition, be honest. Don’t offer input before you understand what the diagnosis means. Your friend might not be up for explaining the condition to you, so ask where you might be able to find reliable resources. (Don’t read the Wikipedia page or Google results. Try the Mayo Clinic’s website or that of organization for the specific condition.)
When I had genetic testing for Huntington’s Disease this past fall, I wasn’t expecting the result to be positive. I did the test mostly to rule it out. Thanks to estrangements that began when I was a kid, I don’t know much about my family history. So while of course I knew it was a possibility I’d be positive, it didn’t seem likely.
Not only was I shocked by my test results, I had no expectation of what might come next. I wasn’t prepared to handle the responses and questions my loved ones had.
I made the mistake of telling a few people exactly what time I would get my results. About an hour later, the texts started coming in along the lines of How did it go? and No news is good news?! I was paralyzed by the shock of what I’d just learned on that call. When I responded that I was positive for HD, everyone’s next question was What does that mean? I wasn’t sure at that point. So I turned off my phone, curled up on the couch with my husband and cried until I was ready to go to bed.
The days that followed were utterly exhausting. I told my closest friends and family my test result, and each conversation brought me to tears. I quickly realized I was unprepared to deal with everyone else’s reactions because I was still having my own.
At first, I didn’t know what I needed my loved ones to say in response to my positive result. I’d tell them and then wait for their reply. Once I had a couple of those conversations, I was able to identify what they said that I didn’t want. I got many responses that were dismissive and detached from people who care about me and meant well.
When I met with a social worker to talk through my feelings about my results, I told her about the things my well-intentioned loved ones were saying to me. I wanted guidance on how to respond calmly in the future (because I wasn’t doing so at first.) She sighed and said, “I wish someone would write a book called What Not to Say to Someone Who Just Got a Serious Diagnosis. All those things would be in there.”
Here are some phrases to avoid when you learn about a new diagnosis and want to comfort your loved one:
“At least you aren’t sick (or sicker.)”
“At least your result wasn’t worse.”
“At least you can still (walk, eat, sing, dance, etc)
I’ll go so far as to encourage you to ban this phrase from your vocabulary. Yes, I realize “it could be worse.” Everything could always be worse. When you imply I should be glad that my current situation isn’t worse than it is, you negate what I’m dealing with. That lacks compassion and dismisses my suffering. Yes things could be worse, but this is bad. It’s okay to say this is bad without being grateful it’s not worse. This is the situation I’m dealing with right now and it deserves to be dealt with in its entirety.
Everything will be okay.
It might. It might not. In many cases of serious diagnoses, things definitely won’t be okay in the long run. Someone who just received a lifechanging diagnosis should not be forced into a false state of acceptance. Saying everything will be okay is denying the very-not-okay stuff that’s happening right now, or is coming in the future. Instead of saying everything will work out, say we’ll get through this together.
Have you tried X? (usually a natural remedy)
No and I’m not going to. I’m going to trust the medical professionals who are experts in this disease. People make suggestions because they want to help. Please understand that telling me to take psychedelic mushrooms or homeopathic remedies for my genetic neurodegenerative disease is condescending. It sounds like you’re suggesting that there’s this one single solution to my problem that I’m too stupid to have discovered on my own.
When I get a suggestion like this, I shut down. I say, “Okay, sure, thanks,” and end the conversation. I’m obviously talking to a person who wants to talk about their own ideas and experiences, not to connect with me and genuinely listen. Making such a suggestion makes the conversation about you. This puts me in a position to have to defend the seriousness of my disease, which makes me feel hopeless because there isn’t a cure or treatment.
Let me know if there’s anything I can do.
The newly diagnosed person has just suffered a trauma, they’re likely in a state of shock. They probably have no idea what would be helpful to them right now. This open-ended question only adds another burden. I’m sad, scared, and generally overwhelmed by everything I’m thinking about these days. I’ve heard this phrase countless times and while I appreciate the intention, I never know what to say. When I took a friend up on this statement, it was so hard for me to reach out that when I finally thought of something she could do, I almost didn’t reach out. I asked her to set up a meal train for the days following an outpatient surgery, but I wondered if she had time to do it, or if she would even want to.
If you genuinely want to help, be specific. And only offer things you’re willing to follow through on. Ask questions such as:
“Can I bring you a meal?”
“Do you need help with X?”
(housework, walking the dog, transportation)
“Can I bring you X?“
(books, coffee, cookies, whatever your “thing” is)
You need to think positive.
The first time I was told this about my HD result, my response was, “Shut up! I’m the most positive fucking person you know!” I’m an optimist, but no amount of positive thinking in the world is going to change my genetic mutation that’s been in my cells since my conception. I’m devastated by this news and I’m hopeful. I’m terrified and I’m inspired to live fully. It’s possible to feel many emotions at once, especially after a major diagnosis. Telling your loved one what they’re supposed to feel and think is demeaning and undermines their own process of dealing with it.
Along these same lines are people who told me “Cheer up,” or “Don’t worry because there’s nothing you can do about it (HD)” or even “If anyone can beat it, it’s you.” All of these phrases were likely spoken with positive intentions, and they all came across as patronizing. I immediately disengaged from these conversations, and I don’t intend to share more with these folks.
Enjoy every moment.
First of all, this is impossible. Not every moment is worth enjoying, some are difficult and painful. I didn’t enjoy finding my cat dead or watching the Capitol riots, and I dare you to suggest that I should! Telling me to enjoy every moment implies that I haven’t been enjoying my life so far. It infers there’s a right way and a wrong way to live and I’ve been doing it wrong.
One of my doctors actually leaned in and told me to remember “every day is a gift.” Okay sure, every day is a gift but also we’re in the middle of a global pandemic. I’ve spent a year’s worth of gifts sitting at home. If I’d gotten this diagnosis two years ago, I’d be in Mexico right now YOLO-ing my ass off. Instead I’m watching live streams of beach cameras at my desk, eagerly awaiting my next trip to the grocery store.
Getting a serious diagnosis during a pandemic has been a gigantic double whammy.
Things I would do for self-care aren’t available to me. I can’t get a massage or go see a movie. I’m not meeting friends for coffee regularly, chatting with my hairdresser, or going to the gym. These are the places I typically talk things through and get support. The things that bring me the most joy (concerts and theatre) aren’t happening.
Telling your loved one they should be enjoying every moment of life right now glosses over what they’re actually going through. Sure, you may not want to acknowledge the pain they’re dealing with (physical and emotional) but pretending it doesn’t exist doesn’t make it go away. It will only make your friend less likely to share with you in the future. It’s totally okay to say THIS SUCKS. Or to admit you don’t know what to say. You are allowed time to process the diagnosis before you react.
Even before I got my HD result, the pandemic had me contemplating how I want my life to look when all this is behind us. Now, knowing I will develop HD symptoms eventually, I’m re-thinking it all again and I’m even more impatient to get back out into the world. I can’t go big and tackle my bucket list, so each morning when I make my To Do list, I ask myself how I can find joy that day. Often it’s as simple as buying fresh flowers, driving through for a Chai latte, or walking my dogs in the sunshine.
This is by no means an exhaustive list of what you shouldn’t say to a newly diagnosed person. It’s meant to be a guide to show you how our words can have unintended consequences. I don’t mean you can’t express your concern for your friend or ask questions, just go at your friend’s pace, not your own.
I can’t tell you exactly what to say in any given situation. And it’s tricky because ignoring your friend’s diagnosis or glossing over it is hurtful. Yet we don’t want to talk about it 24/7 either. You will have to pay attention, tune into your friend, and ask what they need, in order to have conversations that are positive for you both.