Dear Able Bodied People: Why "I Know How You Feel" Hurts More Than It Helps

It can be difficult for an able bodied person to know what to say to someone living with chronic illness. You want to show empathy, but “I know how you feel” hurts. Here’s why.

I had gone limp. My dad had to lift me up from the dining chair and literally drag me to the couch where I could lie down. One of our dinner guests said the five words no able-bodied person should ever utter in a situation like this: 

I. Know. How. You. Feel.

“No you don’t!” I uttered inside my mind, because my ability to speak was minimal. Our guest had diminished my (difficult) experience — an experience she, as a non-ill person, has never had.

Yes, I know, the intention is to show empathy, I know that, and I’m not mad. But intention aside, saying “I know how you feel” is a misguided attempt at being empathetic. 

Why? Because believing that your non-ill experience of, say, fatigue, is the same as us with a chronic illness, belittles and diminishes our experience. We feel forgotten and overlooked (on top of already feeling forgotten and overlooked).

I can say for certain that no non-ill person has ever experienced the kind of fatigue that we feel. Even a person with another autoimmune disease will not have experienced the same kind of fatigue as someone with ME has. 

Then there are all the existential experiences that come with chronic illness, like boredom, restlessness, anxiety, worry, anger.

While you may, too, have experienced anger and boredom and restlessness and so forth, it is no way near the same as what we experience. The cause is not even the same.

See, what happens when you say the words “I know how you feel,” is that you filter the other person’s experience through your own body and mind. You take another person’s experience and turn it into your own. And then you fail to truly understand the other person’s experience. By turning it into your own, you are closing off the possibility of understanding what it must be like for the other person. 

An aspect of empathy involves putting oneself in someone else's shoes and experiencing their emotions and perspectives. But someone who hasn’t experienced chronic illness, and someone who hasn’t experienced the same type and the same degree of chronic illness as the person you are trying to empathise with cannot do this, and you shouldn’t try. 

Instead, listen to what the person is trying to tell you. Approach the other person with a beginner’s mind, a humble mind, whereby you trust and believe each and every word they say. Be OK with not knowing how it feels to be them. 

If you are noticing thoughts come up inside you like “It can’t be that bad”, or “she is overreacting” or “yeah, I get tired, too”, or “yeah, my shoulders hurt too,” notice them and then gently ask them to leave, because those thoughts are of no use if you want to show true empathy to someone with chronic illness. Trust me, we don’t overreact, we often minimise our own pain because we are used to able bodied people not always being able to handle it. 

Ask us in-depth questions that show you are interested in understanding, but by all means don’t ask us questions whereby we have to defend ourselves.

A good question can be: “What comes up for you when you feel restless?” Or “Do you want to tell me more about the pain you feel?”

A question that forces us to defend ourselves is such as “but you could cook yesterday, why can’t you today?”

I know it can be difficult, for someone who hasn’t experienced chronic illness, to know what to say to someone who has, but the surefire thing to do is to listen to our experience without making it your own. 

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Things I love

Liz Plank and Richard Reeves (author of Of Boys and Men) discuss the impact of using the word ‘gender inequality’ when talking about the fact the there are more women in higher education today. Liz makes an excellent point that the word ‘gender inequality’ connotes a sense of injustice and sexism. But structural sexism isn’t the cause of fewer men in higher education today. Watch the excellent talk here, where Richard Reeves learns something new: