Living with fibromyalgia is like living in a foreign country, and the language is one only other chronic illness warriors understand. If you’re lucky enough to find someone who “speaks fibro fluently” (shoutout to my sister-from-another-mister with chronic fatigue), you know how comforting it feels. But when it comes to explaining your needs to loved ones who haven’t traveled this road, things can get…messy. Let’s dig into how to bridge that gap with honesty, humor, and a little vulnerability.
Understand Why It’s Hard for Them to Understand
Here’s the frustrating truth: chronic pain changes your brain, your body, and your very existence. For me, being a Highly Sensitive Person on top of it means I just feel more. I groan, I cry, I make noises that my family jokingly calls “Lucy’s Pain Opera.” But it’s not a performance—it’s involuntary, like blinking or breathing.
The hard part? Family doesn’t always get it. “You’re being dramatic,” they say. What they mean is, “We don’t know how to help, and it makes us feel helpless.” Understanding that their dismissal often stems from their own discomfort can help you approach these conversations with a little more grace (and less urge to scream into a pillow).
Start with Empathy, but Don’t Sugarcoat
When I explain fibro to someone, I lean into analogies that hit home. “Have you ever had the flu? Imagine living in that state half the time,” or “Remember when you went too hard at the gym and couldn’t move the next day? That’s me after cleaning the bathroom.”
Be real, but be empathetic. Acknowledge their confusion while staying firm about your reality. Something like: “I know it’s hard to understand what you can’t see, but trust me, this isn’t just me being sensitive—my body is literally wired differently because of chronic pain.”
Lean on Those Who Get It
Let’s be honest: you’re not going to convert everyone into a chronic illness ally. That’s why finding your tribe matters. My best friend with chronic fatigue understood me without me even needing to explain. We shared the same culture, the same language, and the same journey. Though distance has separated us, she still has a room in my heart.
These connections are invaluable because they validate what others might dismiss. So, while it’s worth trying to bridge the gap with loved ones, remember to lean on those who already get it when you need to feel seen.
The Magic of Venting
One of the best gifts my friends have ever given me is permission to complain. Fibro is a heavy burden, and sometimes you just need to let it out. A simple, “Hey, I know you’re having a rough day—do you want to vent?” feels like someone offering you a lifeline when you’re drowning. Letting someone rant isn’t just kind; it’s revolutionary.
On the flip side, know that it’s okay to set boundaries. If a loved one says, “I’m struggling to understand, but I’m here to listen,” that’s their way of showing up. Even imperfect support is still support.
Practice Saying What You Need
Yes, it feels awkward. Yes, you’ll feel like you’re oversharing. But practice makes progress. Start small: “I’m having a rough pain day and could use some help with dinner.” Or, “I need to rest this afternoon—could we reschedule?” The more you express your needs, the less foreign it feels…to both you and them.
Will it always land perfectly? Nope. But clarity is kinder than silence. By explaining your needs, you’re giving loved ones the opportunity to step up, even if it takes them a few tries to get it right.
Bridging the gap with loved ones isn’t easy, but it’s worth the effort. Whether they fully understand or not, your honesty builds stronger connections and lets you advocate for the support you deserve. And remember, it’s okay if they don’t always get it—that’s what your fibro tribe is for.
