“You’re so strong. If it was me, I would just give up”

If you live with a chronic illness, you’ve heard this type of “compliment” over and over.  A well-intentioned friend, family member or colleague shakes their head at your everyday challenges, and says “I don’t know how you do it; if it was me, I would just give up and lie in bed all day“.  My stomach always twists when I hear these words.  I know it is meant as praise, to recognize the strength it takes to get through each day in spite of all the symptoms of chronic illness.  But if you say this comment to someone living with chronic illness, know that they will not feel flattered or pleased. When you express these sentiments, what you are communicating is that you don’t understand the nature of their daily struggle or how that comment invalidates their sense of worth. If you are a spoonie, I hope this post helps you find your own words to enlighten your friend or family member on how to compliment you. If you are someone who cares about a spoonie, I hope this might help you find a better way to express your admiration and encouragement.

“Where do you find the strength? I would just quit even trying”

 I frequently see social media posts by frustrated spoonies (people who live with a chronic illness), venting about how this type of comment makes them feel. It seems to be the most common way people try to praise spoonies. I think I am a stronger and wiser person after my experiences living with fibromyalgia. If my friends or family notice that change and want to recognize that fact, I wish they would say it as a positive about me, rather than frame it as a negative comparison on themselves. For example, I was discussing with my friend that I think I am coping with a recent setback in a healthier and more positive way than during the first years of my illness. A positive compliment from her would be something like “I think it’s amazing how you are just taking it one day at a time and staying positive even though I can see how difficult the situation is”. A negative comparison on herself would be “if it was me, I would just be wondering why the universe is conspiring against me – I could never see this in a positive light the way you do, it’s amazing.”

“It’s amazing that you even get out of bed every morning”

I’ve always struggled to respond when someone says something like this to me.  If I express a negative reaction, I’m afraid my friend will reply “I don’t understand, all I’m trying to say is that I think you’re great”. I never know how to put into words why, despite that intention, it makes me feel anything but great. I’m going to try to explain it here.

The simple reason that I don’t just give up and lie in bed all day is because that’s not a real option.  I don’t have the luxury.  It’s not a meaningful choice when you live with a condition that has no cure. This comment upsets me because it ignores the reality that I don’t choose to struggle through each day, I am forced to. The reason I don’t lie in bed all day (besides the fact that I would find it really uncomfortable) is not that I’m especially strong or heroic.  It’s because lying in bed all day would be mean giving up on surviving. At some point, you have to make a meal, take your kid to school, or have a shower – and you’re going to want to do that with the least amount of discomfort possible. Living necessarily means having to fight through all of my daily struggles.  That fighting spirit and strength, for me, is just the nature of living day to day.  I know perfectly well that if that same healthy friend who says “I would just give up” actually did develop a chronic illness, they would wake up every morning and try again, too.  Just like we all do.  Because we have to. I like to think that it’s human nature to survive, to put one foot in front of the other, and to keep on keeping on.

“I couldn’t face it day after day, I don’t know where you find the willpower to just get up and try again”

Beyond this, the main response most people living with chronic illness have to this form of praise is that they find it invalidating. While a life with an invisible illness or disability is challenging, the funny thing is, we still want to live it.  We still share love, have passions, make contributions, make art, and have dreams. Our lives are worthwhile and meaningful.  They are worth living.  Even with all the difficulties.  But when the main reaction to seeing what a day in the life of a person with chronic illness looks like is to say “I would just give up,” it invalidates the worth of living that life. It definitely is not a compliment! One person on social media wrote something like “so what, you think my life is so terrible that I should just curl up and die? thanks!” When I remember being healthy and non-disabled, I know that I was always amazed by people who were sick or handicapped but still vital and active-  and wonder whether I would be able to enjoy my life if I was in their situation. It’s a common reaction, but I think one that’s unhelpful to share. Instead, I hope the friends and families of spoonies will try to frame their compliments as positives about the person they care about, without any negative reference to themselves. Here are some more examples:

“I really admire the strength you show in trying all of these treatment options when I can see it isn’t easy”

“I think you showed a lot of grace under pressure when you experienced that setback”

“It took a lot of guts to pursue something you’re passionate about despite all of the recent challenges”