In the language of illness, words can heal, or they can hurt

Sometimes, what lingers longest after a symptom flare-up isn’t the pain of my diseases, but the echo of words spoken by others. Words meant to spark positive conversations and encourage and comfort us can instead leave a heavy mark.

I constantly remind those around me that living with IgG4-related disease, along with a host of other autoimmune and neurological conditions, means a life filled with never-ending appointments, treatments, and setbacks. But there are also significant victories along the way — moments that deserve just as much recognition.

But the one landscape I never expected to navigate so frequently is the tricky terrain of language and tone. Good communication is vital in every aspect of living with a chronic illness — from how we speak with our doctors, friends, acquaintances, and loved ones, to how they talk to us. Words can wound deeply, but they can also be remarkably powerful in healing.

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‘I’m here if you want to talk’

Over time, I’ve kept a quiet internal list of things people have said to me that have stuck with me. Some are well-intentioned and uplifting, others are clumsy, and a few are downright painful. Each one reminds me how much our words matter — how they can invisibly lift a heavy burden or just as easily add to it.

Many of us living with rare and chronic conditions hear remarks that leave us feeling invisible. When someone says, “You look fine though,” they have no idea about the exhausting rituals we go through just to show up and appear “OK.” Or another common refrain: “You’ll be fine, it’s nothing. It will pass.” Such words can shrink real and ongoing suffering into something fleeting and trivial.

Then there’s the unpredictability of IgG4-RD, which often confuses those around us. It shows up in questions like, “You were OK just a second ago! What happened?” — as if chronic and rare illnesses follow a predictable schedule.

Treatment is also often misunderstood. Questions like “Didn’t you just have Rituxan infusions? Aren’t you supposed to be OK now?” reflect the common hope that a single treatment will be a cure-all. In reality, it’s just one step in a much longer and more complex journey of managing incurable illnesses.

Thoughtful inquiries such as, “I know treatments help, but I also know they aren’t a cure. How are you coping since your last infusion?” can mean a great deal, especially when paired with genuine invitations to share personal experiences, such as, “If you ever want to share more about what helps or what doesn’t, I’m here to listen and learn from you.”

And don’t forget the all-you-can-eat buffet of unwanted advice, always open, and always hard to digest. From “Have you tried the keto diet?” to “Yoga does magic for people like you,” or stories about a distant relative who “healed” with diet and exercise alone, these statements gloss over the complexity of living in a body that rarely responds to simple solutions.

It’s not always easy to know what to say — chronic illness can make even the most compassionate friends feel unsure. Sometimes, we’re all just reaching for something, anything, that sounds right. But words don’t have to be perfect to help.

What I and so many others dealing with IgG4-RD and other rare conditions wish we could hear more often are words rooted in empathy and genuine understanding. Simple acknowledgments like, “I know you put a lot of effort into showing up today. If you need to rest or leave, that’s completely OK,” or “I can’t imagine how tough this must be, but I’m here if you want to talk or if there’s anything you need,” make all the difference.

Genuine offers of connection, such as, “I miss seeing you! If there’s a way we can connect that works for you, let me know,” or understanding when plans change with, “I appreciate any time you’re able to spend with me, and I understand if sometimes it’s just not possible,” open the door to real support.

Sometimes, the kindest thing anyone can say is simply, “I believe you.” Other times, just holding space and actively listening without jumping to fix or compare means everything.

Chronic illness may rewrite the story of our lives, but how we speak to each other can soften its hardest chapters. Words can heal. So next time you reach for something to say, remember that a few gentle, honest words might be the best medicine we receive all day.

Note: IgG4-RD News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of IgG4-RD News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to IgG4-RD.