Advocating for Yourself with Fibromyalgia: Why I’m Starting to Bring a List

Don’t Let Brain Fog Steal Your Voice: Why I’m Starting to Bring a List to Every Appointment

If you live with fibromyalgia, you already know the rollercoaster it can be. One day you’re pushing through the pain like a warrior, and the next, your brain feels like it’s wading through molasses. That lovely little visitor we call brain fog? It’s real—and it has a way of showing up exactly when we don’t need it.

One of the most frustrating things for me is going to see a specialist—finally getting in after waiting weeks or months—only to forget everything I meant to ask. I’ll leave the office feeling like I missed something… and like clockwork, the moment I’m halfway home or in the parking lot, bam, the questions start flooding in.

So this time, I’m doing things differently.

I follow up with my rheumatologist this Friday, and I’ve been keeping a running list of questions. Every time I think of something—even in the middle of the night—I jot it down. Whether it’s about arthritis, inflammation, fibromyalgia flares, or alternative treatments, it goes on the list. Because let’s be honest, remembering everything during an appointment isn’t always realistic when brain fog hits hard.

Here’s what I’m doing to make sure I advocate for myself this time:

1. Keeping a digital and paper copy – I emailed the list to myself and printed it out so I can refer to it during the appointment.
2. Highlighting my top concerns – Not everything may get answered, so I’m prioritizing what’s most important.
3. Bringing a notebook – To jot down answers or anything else the doctor says that I want to look up later.
4. Asking follow-ups – If something isn’t clear, I’m giving myself permission to ask more questions (and not feel rushed).
5. Remembering that I deserve answers – This is my health, my body, and I deserve to be heard.

Finding the right doctors is hard. It can feel intimidating, exhausting, and even discouraging—but I’m learning that advocating for yourself is a form of self-care. It’s okay to show up with a list. It’s okay to ask a million questions. It’s okay to not have it all together.

If you’ve ever walked out of a specialist’s office wishing you could turn back time and ask “just one more thing,” know you’re not alone—and next time, make a list.

Your voice matters—even when brain fog tries to dim it.