I posted about my prostate cancer one week ago. (Nothing’s changed — the outlook is still hopeful.) I’m sharing what I learned about empathy from the responses from people: what helped and what didn’t.
This was a post for me, which was unusual
Most of what I write is for you, my readers. It’s writing advice, analysis of items in the news that might reveal something interesting, or facts or perspectives that might enlighten you. Readers are far more likely to respond to posts that are unselfish and helpful or interesting; nobody really wants to read about the author all that much.
But my prostate cancer post was different: A post for myself (mostly). And yes, I’m going to analyze what happened, because, well, that’s what I do, and because you might find these insights helpful if you experience a crisis or respond to someone suffering from one.
I posted about my cancer here on my blog and also linked to it from Facebook (friends only), Twitter, LinkedIn, Mastodon, and Post. Although my largest following by far is on Twitter, with 22,000 followers, there was very little response there. My Mastodon and Post accounts are too new to have much impact. But I got a lot of interactions on my blog and on Facebook and LinkedIn, because that’s where my friends, former colleagues, and acquaintances expect to connect with me.
This was not just a yawp. I had specific reasons for writing what I wrote.
- I wanted to get the news out. Interacting with people when you have a big secret is hard. It’s a lot easier to put it all out there than to tell people individually. (I did tell family and close friends in calls and visits, but that’s just a few people.)
- I wanted support and sympathy. This is traumatic. You are my friends and followers. I hoped that your support would make me feel better.
- I wanted to break taboos. You are not supposed to talk about “the C word.” You are not supposed to talk about certain body parts just below your waist. You are not supposed to talk about personal health news. And you’re certainly not supposed to make jokes about it. But breaking taboos and making jokes makes us all feel better than skulking around and hiding how we feel about things that matter to us. Writing about it was my way of asserting power over it.
- I wanted to educate people. A lot of you, mostly men, are going to be having conversations about prostate cancer with your doctors at some point. There are things about prostate cancer that are confusing. Like a blood test that implies a problem but often is misleading. Or a cancer that moves slowly. Or the idea that waiting around and watching is sometimes the best choice. So I wanted people to hear what I had learned about that. I also thought people would find it interesting to see how to get and take advantage of a second opinion and the cool math behind external beam radiation treatment.
I accomplished all of those goals successfully.
What is the most positive way to respond to someone with a health problem?
I want to state this as clearly as possible: The vast outpouring of responses I got was extremely helpful and reassuring. I received hundreds of comments on this blog, on Facebook, and on LinkedIn. People also reached out to me personally by phone, text, email, Facebook messages, and LinkedIn messages. All of it felt good — like being wrapped in a warm blanket of good feeling.
If you’re in a position to reach out to someone who’s had challenging news about their own health or the health of a loved one, you should know that all of these types of responses help:
- Personalized responses, for example, “That cancer doesn’t know what it’s up against.” These responses told me you know me and appreciate what I was trying to do. They meant a lot.
- Sharing positive experiences, for example, “I had the same diagnosis and also got radiation treatment, and it wasn’t bad. I hope your experience is similar.” In one case, I heard from a close colleague who got radiation treatment and a mastectomy, and I appreciated the solidarity and warmth from her. It also helped to hear from people in the “active surveillance” phase of prostate cancer that they valued hearing about my experience.
- General support, for example, “You got this” or “So sorry to hear.” While these sentiments are not original or unique, they still matter a lot. If you’re debating whether to write something common like this and worried it might sound trite, forget that and go ahead and write it. I certainly noticed when old friends and colleagues expressed their support; taken together, those hundreds of messages meant a lot.
- Likes and other reactions. You might wonder if a simple “Like” matters. It does. Those clicks might not take much effort, but they helped me with the feeling that I was surrounded by people who cared.
It can be uncomfortable to interact with somebody in trouble like this. You might not think you should say anything, and if you don’t, that’s just fine. But even if all you feel comfortable doing is pressing the “Like” button, that matters. And if you write anything else, whatever you write can ease people’s suffering, just because you took the time to respond.
Thanks to everyone who responded: I noticed you, and you mattered.
Two principles: do listen to people in pain, and never give unsolicited advice
Here are two universal principles for dealing with people:
- When someone is in pain, pay attention to what they say they need.
- No one responds positively to unsolicited advice from strangers, so don’t offer it
Let’s start with the first one. Anyone suffering with a serious health problem like cancer or other challenging events, such as the loss of a loved one, a painful breakup or divorce, or a house that burned down, gets a special privilege: the ability to tell people exactly how to interact with them. Normally, etiquette tells you what you can and can’t say to people and how to interact. But when someone is in serious pain, it’s different: those people get to tell you what you can and should do, and what you shouldn’t do, and you have to pay attention.
If a person recovering from trauma says “Please don’t call me,” don’t call them.
If they say “Don’t send flowers, I’m allergic,” don’t send flowers.
If they say “Send me an email and I’ll reach out when I’m ready,” send them an email, don’t call them.
And if they say “I’m in financial trouble and could use help,” consider contributing.
The needs of the person in pain trump your need to do whatever you imagine would be helpful. You may feel like sending food, or calling on the phone, or dropping by, but this really isn’t about you — it’s about somebody having the worst moments of their life. So put their needs above your own (even if you think you’re just trying to help).
A person in pain taking a moment to help you know how to help them is giving you a gift: even though they’re consumed with their own problems, they’ve been generous enough to take a moment to clue you in the best ways you can help them. Accept that gift, and listen to it.
The second piece of advice is about advice. Don’t give it unless you’re asked for it. This is a rule that’s not specific to trauma — people are just resistant to advice unless they’re in a frame of mind to take it. Outside of coaching situations, where the relationship implicitly calls for advice, only give advice to people who ask for it.
This is what asking for advice looks like:
“Does anyone know the best way to deal with leaking gutters?”
“Do you know a weight loss counselor that gives reasonable, science-based advice to people in their 50s or 60s?”
“My doctor says to ignore my high PSA score for now. What do you think about that?
Here is what not asking for advice looks like:
“I just got a new job.”
“I have decided to get married to my boyfriend.”
“I have cancer.”
Learn from this: people sharing news, even bad news, are not asking for your advice, even if your expertise is so wonderful that sharing it feels like an obligation. Your knowledge is going to fall on deaf ears unless the person asked for it. So shut up, because regardless of your intentions, they don’t want to hear it.
Given these rules, what is the correct response to someone who says “Here’s my prostate cancer story, and by the way, my doctors and I have evaluated all the evidence and come up with a plan of action, so I’d rather not hear any unsolicited medical advice?”
By rule 1, you should listen to the person in pain and follow their request and not give advice.
And by rule 2, you should not give advice unless you’re asked for it.
So out of the hundreds of people who responded to my posts, how many violated the rule about giving unsolicited medical advice?
Two. Only two. Not too bad. I guess nearly all of my friends listened to rule 1 or rule 2.
Who were the two people who saw the red light and said “Screw it, I’m driving right through that?”
One was the head of communications for a company that made a device for treating cancer, and sent me a LinkedIn message consisting entirely of a link to the company’s website. Thoughtless and clueless, really. If you think this is marketing, please quit and do some other kind of job, because your emotional intelligence is not up to the job.
The second questionable response was a well-meaning person who sent me an email about what he believed was a better treatment for my cancer and suggested how I could stay in another city for a couple weeks and get the treatment instead of what my doctors and I thought was best for my personal situation. Because he had better information than my doctor’s and my second opinion from the best urologist in Boston, apparently.
This guy must have known he made a mistake, because although I didn’t respond, he followed up with a second email that was a little contrite about bothering me — but of course, didn’t apologize for driving right through the red light I’d put up. Unlike the clueless marketer, perhaps this guy can learn from what he did wrong and do better in the future.
To the 99.5% of you who were supportive and helpful: I’m extremely grateful, and feel like the positive energy I’ve been putting out into the world has been returned to me in a helpful way. That really mattered at a moment when I needed it.
And to the two people who didn’t listen to instructions from a person in pain — learn to listen to people in pain and respond appropriately. No matter how smart you are and how cool your advice is, don’t give it unless you’re asked. Because that’s no way for a mature person to behave in this world, it won’t help, and it reflects badly on you.