If you or someone you love is living with an invisible illness, odds are you don’t need anyone to tell you that it can take a toll on your mind as much as it does on your body. And for the roughly 1.5 million people living with Rheumatoid Arthritis (RA) in the US, with 71 people out of every 100,000 diagnosed each year, the gaps in knowledge and understanding about the condition from the general public can absolutely contribute to that additional and unnecessary pain and discomfort.
Because, look: No one is ever going to have the right words 100 percent of the time to address the pain that someone with RA has — even when we’re looking at peer-to-peer support — because each person and each body has different needs, pain levels and experiences. That said, there are a few low-hanging fruit things you can remove from your conversational repertoire when you’re talking to someone living with this condition to alleviate just a little of the stress and level-up your ability to be a true part of their support system.
So go ahead and read on for a few things you can just not say to your friend or loved one living with RA:
‘Have you tried [insert activity, remedy or supplement]?’
Well-meaning people frequently fall into this trap when talking to people with chronic illnesses or conditions (ranging from RA to things like depression or anxiety). It comes from a place of kindness and generosity more often than not but that intent doesn’t negate the fact that someone who is not your doctor trying to offer unsolicited healthcare advice is a deeply uncomfortable situation for someone who is on their journey to coping with a condition.
A good rule of thumb is to really, really listen to the person you’re talking to or trying to support. Did they ask for your recommendation for an accessible yoga class or an essential oil diffuser? Then by all means, offer up your thoughts and two cents freely. If they did not and this is simply your response to their pain or discomfort, maybe reframe and try to ask what they need or if there’s anything their healthcare providers have recommended that they are hoping to try. And try to understand that, fundamentally, their health is no one’s business but their own and that you aren’t entitled to that information.
‘Everybody’s bodies hurt sometimes.’
It can be really common to want to relate to someone who is confiding in you about their pain — and acknowledging similar situations (like chronic illness or pain) that you or someone else you love experience can, occasionally, be a way to ensure your loved one knows you get it. But it’s super important to remember that each person’s experience is unique (so your aunt/cousin/brother’s situation may not align) and that you don’t want to dismiss theirs as something “everyone goes through” or imply they’re not handling it as well as they could be.
And the last thing you want to do is compare something extreme like the pain of RA to the time you slept on the ground camping or tweaked your back the other day. It’s not the supportive statement you think it is.
And, pro-tip: Do not advise they just take an OTC pain reliever. They absolutely have exhausted that avenue, I promise you.
‘You’re too young to have RA’
Myths about various conditions always have a way of coming back to harm the people living with them and the idea that Rheumatoid arthritis is simply an “old person” disease rather than a more complex autoimmune condition is one that can consistently hurt people living with it of all ages.
According to the Centers for Disease Control and Prevention (CDC), 54 people in people in the US have at least one form of arthritis — and only about a third of those people are those that get a diagnosis later in life. For RA patients, the most common period for symptoms to appear is between the ages of 30 and 50, according to the American College of Rheumatology but it is very possible (if more rare) for an individual to be diagnosed earlier.
Not to repeat myself, but a really good practice here (and pretty much always) is to believe people about their conditions and not try and argue with them about it or contend that they don’t know their bodies.
‘You don’t look sick!‘
This can feel deeply maddening to someone who is living in a body dealing with the pain and discomfort that comes with RA — because the invisible nature of their illness can often leave them with the unwanted part-time job of convincing other people that their pain and their experiences are real.
If you know or love someone with RA or any chronic condition, it can be really beneficial to them to remove that responsibility from off their plate by accepting and believing them when they open up to you about their condition or any accommodations they might need. It’s not your place to play health and body detective with anyone’s lived experience and it can do wonders for your relationships with people when you spend less time trying to interrogate them about their reality and do more trying to support them with love and empathy.
And, ultimately, don’t be afraid of having ‘nothing’ to say…
Less of a “don’t” and more of a good take-away for any kind of conversation with someone who is going through an experience you can’t fully understand: You’re not expected to have answers or solutions for them. That’s what they have doctors for.
You might be grasping for those words or that “let me fix it” energy out of a need to feel less helpless and wanting to stand by your friend or loved one, but it’s really okay to release that. Instead, what you can do is simply say “I’m sorry you’re in pain” or, if you’re close enough, ask if there’s anything specific you could do to help them out when they’re experiencing more extreme symptoms or if there’s anything you can do. Even if the answer is just listening to them and empathizing, that’s still such a valuable thing you can offer another person.