Running a quick internet search about what families and friends should and shouldn’t say to cancer patients yields literally thousands of results. As our staff sifted through some of them, we realized that most of the advice seemed very generic despite this topic being obviously very sought out. So we set out on a mission: instead of guessing what works and what doesn’t for our patients, we decided to ask them directly.
The first question we posed our community was: “How do you feel when people say ‘I’m sorry that this is happening to you’?”
Nineteen patients responded to our inquiry, and here is what they had to say.
“I’m sorry” is comforting, empathetic, honest, and caring. 9 respondents, with many others commenting their agreement, articulated how hearing “I’m sorry” is exceedingly more appropriate than many of the other comments mesothelioma patients are used to receiving, with one community member commenting they “had so many people avoid me or say the wrong thing.” Another community member verbalized a similar experience:
“I’ll be honest, I find myself struggling with what to say even to other warriors on here sometimes. It’s hard, so I give them a pass. But I do hate it when people say something about not losing my hair, therefore my ‘kind of chemo’ must not be too bad. That visual of a cancer patient with a bald head certainly garners more sympathy even if you’re sick as a dog.”
This community member was not alone in thought. Of all the comments that emphasized wrongdoings of family, friends, and coworkers, it was obvious that a line does exist when expressing empathy to mesothelioma warriors. While all respondents expressed how “I’m sorry” is acceptable, many followed up with statements such as:
“I know people mean well and just don’t know what to say but I always hated ‘I just know you’re going to be all right’ because they knew no such thing.”
“This statement is their way of showing sympathy. I have many, many more statements that rub me the wrong way. For instance ‘but, you don’t look sick!’ That one makes me want to scream.”
“…what I hear from many patients is the unspoken pressure put on us to pretend everything is ‘fine’ once we are done with treatment. How often do we hear ‘everything is fine now though right??’”
“When I was first diagnosed with meso, it was such an awkward thing for my friends, they did not know what to say. I did get tired of hearing ‘well I could get run over by a bus & die tomorrow’”
When expressing empathy, it is best to do just that, and then take the patient’s lead in what to do next. One community member pointed how “It is a struggle to say anything that is meaningful, comforting and honest. The one thing my friend did upon hearing was say nothing but give me a heartfelt hug. I needed that.” Another respondent said “I just tell them it’s OK and shift the conversation,” while another community member empathized with those searching for words: “I understand that it is difficult to know what to say or not to feel guilty about having great health–but I just am pleased when someone asks about how I am doing or expresses a thought about my situation. I never take offense at someone who is trying to make me feel better.”
In all, expressing compassion for a mesothelioma patient is welcomed and understood, and saying “I’m sorry” is an appropriate way to communicate empathy. However, qualifying this sentiment with phrases that attempt to make the patient feel better about themselves—“but, you don’t look sick!”—colors the empathy you sought to give. Stick with “I’m sorry,” give a hug if it is appropriate and welcomed, and above all, take the patient’s lead in how to outwardly handle their diagnosis.
