5 Platitudes That Don’t Help Me Live Better With RA
These phrases do more harm than good, so columnist Lene Andersen offers some more supportive-sounding alternatives.
Even the most introverted among us cannot live in total isolation. Whether you interact with others virtually or in person, there comes a time when your rheumatoid arthritis (RA) might come up in conversation. Which is a cue to brace yourself for the onslaught of platitudes. When people don’t know what to say, they rely on old adages that are intended to sound encouraging or comforting, but from the recipient’s (our) point of view, usually are neither. I’m taking a look at the five top platitudes offered up to those of us who live with chronic illness, sharing why they don’t work, and what might sound better.
“Whatever doesn’t kill you makes you stronger!”
Depending on how I feel when I hear this, I might either laugh (darkly and derisively) or start foaming at the mouth with rage. Living with RA is very definitely a builder of strength and resilience. However, suggesting that anything short of death is somehow a benefit comes dangerously close to looking for a silver lining with a magnifying glass and coming to the conclusion that I should be grateful for my opportunity to become an emotional superhero. When does it stop? Who decides where the line moves from a test of my fortitude to enough pain and loss that it’ll kill me? None of this is a good option.
Instead, I’d like for people to know that simply acknowledging chronic illness can be difficult and saying that you are willing to listen is a powerful moment. It can help someone with a chronic illness feel less alone.
“Just think about how much worse off other people are.”
Speaking of foaming at the mouth, this is a particular loathsome suggestion that has its roots in what’s called inspiration porn. This is the glorifying of people with disabilities simply because they have a disability and in the same breath dismissing your own struggles, because at least you’re doing better than they are—simultaneously assuming that the life of a disabled person is automatically awful. When you’re in the depths of a really hard time with RA, focusing on other people who are in harder straits doesn’t do anything but make you feel guilty about not coping with what you are personally going through. It negates the deep and profound reality that life with RA can be devastatingly difficult at times.
Pain—whether physical or emotional—is not a competition. It’s OK to feel sad and in fact, sitting with the feelings and acknowledging them may even be the way out of the darkness. So it might be helpful to ask something like: “What is the pain like for you?”
“You should try this diet I heard about.”
There are hundreds of variations of this platitude all over the Internet, all boiling down to a nice a way of saying that “you are what you eat” (and some even go as far as that offensive statement). Suggestions that you should change your diet, try this supplement, get more exercise, or sign up for a special program that’s nothing but snake oil are not actually helpful. They oversimplify the medical reality of having a complex autoimmune disease and much worse, these types of comments subtly suggest that really, it’s your own fault for not doing The Right Thing. Trust me, were it as easy as they think, none of us would be living with a chronic disease that affects every part of our lives.
The real deal is that only a handful of people with RA seem to respond to dietary changes; supplements rarely hit RA where it hurts; exercise is no cure; and that "special program" costs a whole lot of money for something that works no better than a fairy godmother waving a magic wand. A better approach: Ask the person with RA about how the condition is actually treated. Show real concern and support by educating yourself and listening to the experiences of someone living with RA every day.
“Everything happens for a reason.”
Just... No. I heard this as a child with untreated autoimmune arthritis that kept me from going to school and put me in a wheelchair at 16. It was the variation of the suggestion that God had a purpose for giving me this disease and even as a kid, I couldn’t reconcile the idea of a benevolent deity who also gave little children a debilitating and painful disease. If you are a person of faith and this idea gives you comfort, that is absolutely your prerogative. But in my view, what possible purpose could there be for making someone suffer, whether by divine direction or any other reason? As I grew up, I’ve coped by sometimes assigning meaning to specific things that happened, because the capricious randomness of RA was hard to swallow. Using my experience of having this difficult illness to help others live better with it has definitely been a way to make my life meaningful. But don’t tell me that this is the reason a little girl’s immune system malfunctioned. That’s just too mean.
A better approach would be to ask: “How do you cope with the hard parts of having RA?” Life with chronic illness isn’t easy but talking about coping strategies can be a way of coping in itself. It can remind the person with RA, as well as the people who care about them, of the many ways we adapt and get through hard things.
“Mind over matter.”
This statement usually has an enthusiastic emphasis (“Mind over matter!”). But even with the exclamation point, it does not increase my enthusiasm about the suggestion that if I just wanted it enough, my RA would go away or if I wasn’t committed to being sick, maybe I could take a flight of stairs (despite having spent the past four decades in a wheelchair). Almost elegant in its simplicity, this platitude succeeds in both blaming us for needing some extra help (such as medication, workplace accommodations, or financial support), while at same time allowing the healthy to wash their hands of us and not be inclusive. Because clearly, we are just not trying hard enough. The science is pretty clear on the fact that you can’t cure RA with the powers of your mind, though.
More helpful: “I’m going to come over and help you. What do you need?” Sometimes, it’s not about what you say, but what you do. Being interested is important, listening is essential, and actually giving of yourself can make all the difference. Other ideas include offering to drive and provide company for a medical appointment, vacuuming, babysitting, meal prep, or simply a hug. These will all make a difference.
The problem with platitudes is the way they sneak under your skin, like a tiny cactus spine niggling at you that maybe, just maybe, there’s something to it. There isn’t—they tend to be statements that people use as a way to cope with the difficult and inexplicable. As such, if you find one of them useful to motivate yourself in the moment, have at it. But if you’re on the receiving end of a platitude, counter it with something real. Depending on the situation and your mood, you can gently (or forcefully) call out the assumption behind the statement and use it as an opportunity to share what really happens when you have RA. It could be the start of others having a deeper understanding and that’s always a good thing.