In an eerie coincidence, the same week my book was published – a family saga with the word “death” right in its title — a close family member was diagnosed with a serious illness. It’s a liver disease that’s been seen in our family before with fatal results. Though not hopeless, it is at best an extremely difficult crisis. It is the boogeyman.
We’re not the kind of family to hit the social media circuit with alarming, heart-wrenching announcements. We suffer best in intimate surroundings. But as time goes on and the disease muscles its way into everyday life, it becomes necessary to tell people outside our inner circle why things are changing. Some of the people who should respond with the simple sympathy and support we need choose another route. They respond with unwanted, quack-tastic theories and advice about what went wrong.
Questionable health advice is part of social life in the Google age. When it’s aimed at me – a healthy person just entering mid-life – I can grin and listen to it. If an idea is important to my friends, I can make it important enough to me to bear a thorough, good-humoured airing of it. That’s empathy. But when Google-lore is leveled at my loved one’s acute health crisis, it becomes a different matter entirely. Suddenly, the onus is no longer on me not to be callous about my friends’ attachments to their pet beliefs. It’s now on them not to be callous of my grief and anxiety. That’s empathy.
I understand that no one I know has any malicious intent toward sick people or their loved ones. At the root of unsolicited advice about magic grease and mega-minerals and super-berries is an earnest desire to be helpful – to give me the information I need to escape the suction of the awful yellow-green vortex swirling in the depths of my gene pool.
And I do have friends and relatives – people with decades of education and experience in both conventional and alternative medical fields – whom I shamelessly pester for unpaid, informal advice on health matters. The problem isn’t that I’m too proud to seek out or listen to advice.
The problem is the subtext people like me, who are dealing with sensitive situations, can read into well-meant advice.
Let me explain what it sounds like when I’m told by anyone other than an attending health care worker how to save my loved one and myself. It could be any kind of advice, like do not, under any circumstances, drink sweet, fizzy drinks. (Yes, someone once told me pop is the worst thing anyone can drink. Actually, I’d wager mercury is the worst thing anyone can drink – or molten lava, or tailing pond-water, or bleach, or a broken-glass smoothie). The advice could be warnings never to eat gluten or dairy or red meat or unicorn hoofs. It could be voicing suspicions about all those sinister vaccines. It could be nothing more than pushy chatter about positive thinking.
Right now, this kind of advice all sounds harsh and denunciatory. No matter what anyone intends when they say it, none of this feels like good will to me. Instead, it’s like being told my loved one deserves to be sick because he’s not as smart as the people on Google and he fricked up his body, like an idiot.
And that’s not true.
Even if it was true, what good would it do to lavish scorn on someone’s choices now that he’s already sick?
So save it. When someone cracks the door open and makes the darkness of their tragedy visible, don’t shoulder through the gap and start tripping around wreaking havoc in the gloom. Accept what they’ve shared and tell them, “Oh my gosh, I am so sorry to hear that.” Sit and listen. If you can, find out where that sick loved one is and go shovel the snow off his sidewalks. Or tell that struggling friend how it was when you were living in the same kind of shadow. Say a prayer. Give a hug. Shut your face.
Jennifer Quist, PhD 
Well said, Jen. I will say a prayer.
About five years ago I was working at an editing company and I was tasked with ghost writing a book called “What Not To Say” and it was about what not to say to someone while they were grieving. Pretty much the exact situation as this. Without getting into that particular family and their grief, the research I did was fascinating and eye opening to say the least. It’s hard for some people to contextualize their own words, to know that what they mean and what someone else hears are sometimes wildly different. Most of the time people offend with the best of intentions, but sometimes you get idiots who compare the grief of losing a child to the grief of losing a dog. (“My dog is like my kid.” Give me a break.)
All we can do is educate with posts like this. Well done, and much needed.
P.S. The book was never finished. The project was shut down due to some family drama. It was crazy.
I see. I don’t agree. The best advice I was ever given by a professional I was consulting with was- keep an open mind. I, personally, am always looking for ways (within my power) to improve my circumstance. I think when people google on your behalf- I believe that they are trying help in there own way. I ‘m ok with that. Not everyone is good with tragedy or tough news. Learning to serve in a meaningful way takes practice. I believe that no one deserves what they get – good or bad. My mom had a good friend dying of cancer. Her doctor told her to stay as healthy as she could. It would not cure her cancer but it would help her better enjoy the time she had left. My thought is if any (even stupid) advice is sincerely given – thank them for the concern/advice – maybe let them know that you are just looking for support, not direction. If it is not sincere – just tell them to go to hell.
Seems like you might be one of those who lobs bombs onto the already weak, patting yourself on the back with good intentions. As a terminally ill person, it’s more than I can handle to deflect those bombs of advice often. As my friend, it’s your job not to hurt me with them in the first place. It’s your job to find out what I might be receptive to, which starts with listening – carefully. I have already had to suck it up and deal with dying. What I am reading in your comment, is that I need to suck it up when you tell me the way I *should* be helping myself. As if my best was and is not good enough. Like it’s easy to simply let go of what doesn’t work for me, as if this new thing could save me but I just cannot manage to incorporate one more berry, powder of routine into my desperate days – and will die because of it. I also bet you feel defensive and slighted that I have read so much into your comment. But that is the nature of the mind of those dealing with life and death circumstances and you need to understand that. Like the article stated – that’s empathy, and you need to use it at all times before you ‘help’ anyone, sincere or not.
Best article I have ever read on this subject. Loved, loved, loved the ‘punchline’ – I made an audible ‘noise’ when I read it and vowed never to be guilty of offering advice or information that was not asked for. Ever. I cringed when I read this article and realized that I have been guilty of this in the past. Good intentions, yes, but who cares? No more. Thanks Jennifer. I will take your advice and Shut My Face!
I’ve done it too. Yeesh.
I have been hesitant to comment having taken up residence involuntarily inside the “gap.” I know the awkwardness that a serious illness packs when it impolitely shoves its way into personal relationships. Walking around after hearing ominous words from a doctor, you are suddenly truly tuned into life’s real priorities. Maybe I have a morbid sense of humour but I am tempted to laugh out loud when I encounter someone who nonchalantly poses a cheerful, “Hi, how you doin’ today?” At first I was tempted to answer, “Oh fine other than the fact I am dying from a terrible illness. And you?” From day one after diagnosis, I was hesitant to share my condition with just anyone. In a way it’s like my dirty little secret. I am aware of its power as a trump card to take full command of a conversation but I almost always wisely choose not to employ it. To be frank, it’s an immediate downer to any conversation and I have never been comfortable presenting myself in the role of victim. It’s much easier to respond with the answer they want and expect, “Fine thanks, how are you?” I focus on living, contributing, and trying to have a meaningful and hopefully lasting impact particularly among my own circle of loved ones. I treasure experiences with my spouse and our offspring recognizing all too we’ll the reality that our opportunities for meaningful experiences can suddenly become severely limited. Perhaps the best comment made to me yet came from a close friend whose face filled with sadness as he simply offered up this heartfelt observation, “We’ll, maybe there is an advantage to know that death is near while you still have time to get organized and prepare for it.”
❤
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