The things we don’t say: Why vasculitis patients might stay silent

We all have things we don’t talk about with our doctors. The reasons are endless. Sometimes we feel rushed and don’t think there’s enough time to share everything. Sometimes we’re unsure whether what we’re experiencing is even relevant. Other times, it just feels too personal, too private, or too painful to bring up.

There are moments when we haven’t fully processed our own grief, sadness, or shame, so we keep things buried. I’ve left things unsaid. And I’m willing to bet you have, too.

In a previous job, I worked closely with people living with Parkinson’s disease. I constantly encouraged them to be open with their doctors — to talk about their bad days, not just their good ones. I would listen to caregivers who were frustrated because the person they saw at home wasn’t the same person who showed up at the doctor’s office.

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At first, I struggled to understand that. From the outside, it seemed obvious: Why not just tell the truth? The doctor can’t help if they don’t know what’s really going on. And then I realized, truth be told, I did it, too.

Whenever I had the flu, bronchitis, or some other ailment, I wouldn’t drag myself into the clinic in my pajamas. No, I’d shower, fix my hair, maybe even put on makeup. I’d muster some energy, smile politely, and deliver a condensed, 20-second summary of what felt like an hourslong ordeal happening in my body. I glossed over and sometimes unintentionally edited the truth — just like everyone else.

That realization was eye-opening. But nothing prepared me for the deeper wake-up call that came with my vasculitis diagnosis.

When you’re living with a rare disease, your relationship with your doctor becomes even more vital. You need them to listen, to trust you (even if your labs are contradicting your experience), and to like you. If you think you don’t care about that, I’d challenge you to reflect a little more deeply, because wanting to be seen and heard is simply human.

But here’s the catch: What is left unsaid can matter a lot. What we leave on the proverbial cutting-room floor — the pain, the fear, the confusion — may be the very thing our doctor needs to know. And it’s likely something we need to say.

That’s why I’m so excited about an upcoming opportunity. I’ll be presenting on behalf of the Eosinophilic & Rare Disease Cooperative at the American College of Rheumatology Convergence this October. The session is called “What Your Patients Aren’t Telling You: Patient Perspectives.” It’s a chance to shine a light on the silent struggles, to help doctors better understand how to connect with us, not just clinically, but also emotionally and personally.

Patients are invited to take a short, five-minute survey. Your voice can help shape what doctors learn. Your experience can open someone’s eyes. Let’s speak up — for ourselves, for each other, and for better care. Because what we don’t say might be the most important thing of all.

Note: ANCA Vasculitis 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 ANCA Vasculitis News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to ANCA vasculitis.