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Postscript Edito’s Note: A few have called me out on this post for making it too complex – here is my summary – just saying “You look great” is in my view not enough,, from my window as a patient – follow up with “How are you, really?” to know the honest reality which lies behind the outside skin, Love to all!!!
A little while ago I wrote about positive toxicity. In fact, I’ve written about it more than once. I described it as the tendency to reach for one-size-fits-all positivity when someone is living with chronic illness. We’ve all heard the phrases: “Stay positive.” “Everything happens for a reason.” “At least…”
I still believe what I wrote. But over the past few days I have realised that, like most things involving people, the reality is more nuanced than my original article suggested. There is a world of difference between someone dismissing your suffering and someone trying, out of genuine love, to encourage you. Oddly enough, both can sometimes leave you wrestling with the same emotions.
That realisation came from a conversation with a close relative whom I love dearly. She has experienced enormous suffering in her own life and is one of the most sincere people I know. She came to visit me, looked me in the eye and said three simple words.
“You look great.”
I suspect many people living with chronic illness have heard those same words. They are usually offered with kindness, affection and the very best of intentions, and that was certainly true here. Yet my immediate was that instead of feeling grateful, I felt frustrated. For a while, those three words genuinely made me angry, even though I knew they had been spoken with love. That contradiction puzzled me because my head understood the kindness while my emotions seemed to be having an entirely different conversation (The Toxic Positivity one).
We spoke about it afterwards and, later that day, she sent me a message that has stayed with me.
“I thought perhaps it might make you feel better about yourself, in no way to minimise your suffering, and also because the disparity is surreal. I am really sorry if it is apparently thoughtless.
The truth is, though, you are indeed looking particularly handsome these days.”
I smiled when I read it. Not simply because of the cheeky compliment, although I was less than happy to accept that.
What struck me most, however, wasn’t the compliment, it was the extraordinary depth of feeling behind it. She wasn’t denying my illness, pretending everything was fine or trying to sugar-coat reality. Quite the opposite. She had explicitly written that she was “in no way” trying to minimise my suffering. She was simply holding two truths together at exactly the same time. She genuinely thought I looked well, and wanted me to know it, while fully appreciating that my daily reality was very different.
That was the moment I realised that this wasn’t really about positive toxicity at all. It was about something much more complicated: what happens when genuine care and love collides with the reality of a progressive neurological disease.
I spent a long time trying to make sense of it and the result is the infographic below.
It isn’t scientific, nor is it intended to be. It is simply my attempt to untangle why three well-intentioned words can provoke so many different emotions at exactly the same time. Each column represents one part of the story. No single column contains the whole truth. Only when you step back and look at the complete picture does it begin to make sense.
The first column explains why those words were spoken. In my case, they came from genuine love. My relative wasn’t trying to make me feel better by denying reality. She wasn’t pretending that PSP isn’t devastating. She was recognising resilience. She was seeing someone who still writes, still laughs (occasionally), still practises yoga every day and still refuses to surrender. She was recognising effort, not denying illness.
The second column is my reality. It is only a snapshot, but it includes the nerve pain, photophobia, noise sensitivity, loss of smell, poor balance, swallowing difficulties and fatigue that sleep rarely fixes. It includes the wheelchair, my wonderful live-in carer who enables me to remain as independent as possible, and the fact that I rarely go out because light and noise have become overwhelming. Most of all, it reflects the painful reality that a world has shrunk dramatically. None of those things are obvious over a cup of coffee, in a photograph or during a brief conversation.
The third column became the key that unlocked the whole puzzle for me. Looking well is not the same as being well. People often see an hour of my day. They don’t see the other twenty-three. Appearance is only the cover. The illness is written on the pages inside.
The fourth column acknowledges something that every person living with a progressive disease understands. Today’s symptoms are only part of the story. Tomorrow quietly accompanies today. It doesn’t dominate every moment, but it is always there, sitting in the background. Living with a progressive illness means living with today’s reality while knowing that the future will almost certainly ask even more of you. Mine is likely short and painful.
The final column is where everything came together. Both things can be true. Someone can genuinely think I look well, and at exactly the same time my daily reality can be unimaginably different from what they see. Those truths don’t contradict each other. They complete each other. She was right when she described the disparity as surreal.
Perhaps the biggest surprise in all of this was discovering that the problem wasn’t really the words. It was my reaction to them. I should receive those words with gratitude because I know they come from love. Instead, they sometimes take me straight back to my reality and stir an unexpected frustration. I know that reaction is irrational, and perhaps that is what troubles me most. The frustration isn’t directed at the person speaking. It is directed at the disease.
So what have I learned?
Not that people should stop saying, “You look great.”
Kindness matters.
Encouragement matters.
Love matters.
But perhaps those three words are only the beginning of the conversation, not the end of it.
Perhaps the next question is the one that really matters.
“How are you, really?”
That question leaves room for both truths. It leaves room for good days and bad days, for honesty and for hope. It acknowledges that someone can look well while carrying an invisible burden that few people ever see.
Looking back, I don’t think this article is really about three words.
It’s about the space between intention and impact.
It’s about the difference between looking well and living well.
And, perhaps most importantly, it’s about recognising that love and reality are not opposites. Sometimes they simply coexist, and our challenge is learning to hold both truths at the same time.
