Sometimes, it’s better to say nothing at all.
None of us says all the right things all the time. I’m constantly working on ways to improve my communication.
Half the battle is being aware of what to say or not — and how to say it. Tone and delivery are often almost as important as the message and the intent.
There are things that make certain discussions more delicate or sensitive, but that doesn’t have to mean more awkward.
Through living with illness, I’ve found that people sometimes just don’t know what to say or how to talk about it in a meaningful, engaging, and compassionate way. So here’s a quick primer on the mistakes to avoid when you’re discussing rheumatoid arthritis (RA).
Rheumatoid arthritis isn’t the same as wear-and-tear osteoarthritis (OA). It’s an inflammatory autoimmune disease that results from an overactive or malfunctioning immune system.
Although OA also involves inflammation, RA is a systemic disease that can lead to serious complications, extending well beyond stiff and swollen joints.
The OA that you or your loved one may have gotten from an old sports injury, a job working on their feet, age, or general wear-and-tear — while still possibly painful and debilitating — isn’t the same as rheumatoid arthritis.
Which brings me to my second point…
Don’t compete, compare, one-up, or insert yourself into someone else’s journey.
Instead, listen and show empathy, and only share your story if it adds value. If you are sharing something personal about your own medical experiences, ask yourself whether you’re doing it for yourself or for the person you’re talking with.
Part of friendship is being able to share ups and downs with each other. If someone with RA is sharing a “down” with you, don’t interrupt to share your own. Listen and truly hear them.
Later in the conversation, when appropriate, you can share the things going on in your life and engage in that natural give-and-take of friendship. People with chronic conditions can often make really good listeners.
Just be sure you’re doing your part to listen, too, and make sure your friend feels heard.
Here are four questions to keep in mind before saying something:
- Is it helpful?
- Is it necessary?
- Is it educational?
- Is it kind?
We already know living with RA can be unpleasant. Please don’t infantilize or feel bad for us.
Sympathy, empathy, and compassion are great, but please don’t feel sorry for us. Wallowing or dwelling on it won’t help anybody.
You’re probably just trying to be nice, but saying “At least you don’t look sick” is minimizing our experience. Sometimes, it even makes us feel like we have to “prove” how bad our disease is.
No one is “too young” for RA. Even babies can develop juvenile idiopathic arthritis, the childhood equivalent to RA.
The sentiment “You shouldn’t have to deal with this at your age” is fantastic. The phrasing “You’re too young for RA” is not.
It makes us feel like we have to be defensive or explain ourselves, when we really do not.
If someone asks for your advice, by all means, please give it.
If someone doesn’t, tread lightly — especially if it’s about something as personal and as important as their health.
We know — and we’re grateful it isn’t. Perspective is key, but while it could be worse, it could definitely also be better. Please don’t minimize that fact.
We’re entitled to our feelings about our body and our health condition.
Being positive is a good thing, but having the mindset that someone should be positive all the time — even when things are terrible — is called toxic positivity for a reason.
Toxic positivity can be extremely detrimental to someone’s medical journey and can be dangerous for their mental health. If optimistic thoughts and hope were all it took to be rid of RA, we’d all have healed ourselves ages ago!
A positive mindset is crucial — I mean, it’s really, really key — but too much of a good thing can do more harm than good.
So instead of suggesting someone “just be positive,” tell them all their feelings are valid. Give them space to be real and find balance. Being positive doesn’t mean you’re happy all the time, and it’s important to remember that.
You can’t see the light without the dark, but sometimes, chronic pessimism, worry, or negativity can really dim our spirits and bring us down. No one is saying you should never have a negative thought, but don’t get stuck dwelling in the swamp of bitterness if you can help it.
People with chronic pain conditions and autoimmune diseases may already have enough doom and gloom. Be a source of light, when you’re able.
It’s important to realize that not all of these tips apply to all situations, all the time. There are a lot of gray areas and a lot of room for nuance.
Take what you need and leave the rest, as we all learn to navigate life with chronic conditions together.
Ashley Boynes-Shuck is an author, advocate, and health coach based in Pittsburgh, PA. Despite living with RA for 25 years, and having other medical conditions too, Ashley has spoken to Congress, published 3 books, and even been tweeted by Oprah! She works for a tech startup, is a pet mom to 3 dogs, and enjoys birdwatching, concerts, playing instruments, and travel. In her free time she writes poetry and goes hiking with her American Ninja Warrior/schoolteacher husband Mike. Find her on LinkedIn or Instagram.