Between Us: A Letter to My Friends and Family Who Don’t Have Fibromyalgia

To my friends and family who don’t have fibromyalgia, I know it’s hard to understand what I go through. I know there are days when I seem distant, fragile, or completely different from the person you used to know. And while I’ve tried to explain, I realize that chronic illness can be difficult to truly grasp unless you’re living it. So I’m writing this not to make you feel sorry for me, but to invite you into my world.

This Isn’t Just Being Tired

When I say I’m exhausted, I don’t mean I need a nap. I mean there are days when getting out of bed feels like lifting a thousand pounds. My muscles ache like I’ve run a marathon, even when I’ve done nothing. My brain feels foggy, like I’m walking through a haze. It’s not laziness or disinterest—it’s my body fighting a battle you can’t see.

So if I cancel plans or seem like I’m not fully present, it’s not because I don’t care. It’s because I’m managing pain, fatigue, and sometimes, emotional overwhelm—all at once.

I Don’t Always Look Sick

One of the most confusing parts about fibromyalgia is how invisible it can be. You might see me laughing or out shopping one day and assume I’m fine. What you don’t see are the hours I spent recovering, the pain I’m masking, or the moments I crashed afterwards. I’ve learned how to smile through discomfort and push myself because I don’t want to feel left behind.

But please remember that just because you can’t see my illness doesn’t mean it’s not real. Every day, I make choices based on how much energy I have, how much pain I can tolerate, and what I can handle emotionally.

I’m Still Me, Just a Little Different

I know I’ve changed. I can’t always do the things I used to. I say no more often. I take longer to respond. But deep down, I’m still the same person. I still want to connect. I still want to laugh, to love, and to be a part of your life. It just looks a little different now.

Some days I need more quiet. Some days I need more support. And some days, I just need you to sit with me and accept where I’m at.

Your Support Means Everything

The smallest gestures can mean the world. A message to check in. An understanding smile when I decline an invitation. The patience to listen when I need to vent. These things help more than you know. They make me feel seen, not pitied. Loved, not judged.

You don’t have to fix anything. You don’t have to understand every detail of fibromyalgia. Just being there, consistently and without pressure, is powerful. It tells me I’m not alone in this, even if my pain is mine to carry.

What I Wish I Could Say Out Loud

Sometimes, I’m scared. I worry about the future, about missing out, about being a burden. I feel guilty for how my illness affects those around me. I wonder if people will get tired of accommodating me. These thoughts weigh heavily, but I don’t always say them. It’s hard to be vulnerable when you already feel so limited.

So if I seem distant or withdrawn, it might not be about you at all. It might just be me trying to cope. And if I do open up, it means I trust you with the most fragile parts of myself.

How You Can Help Without Fixing

If you’re unsure how to help, here are a few ways that really matter:

• Believe me. Trust that what I’m feeling is real, even if it doesn’t make sense to you.
• Don’t minimize. Avoid saying things like “everyone gets tired” or “it could be worse.” These phrases, even if well-meaning, feel dismissive.
• Offer options. Instead of expecting me to show up a certain way, give flexible choices: “Want to come over or would a phone call be better?”
• Respect boundaries. If I say I need rest, know it’s not personal. It’s self-preservation.
• Be consistent. Reliability builds trust. Knowing I can count on you, even when I’m not at my best, makes all the difference.

You Don’t Have to Understand Everything to Be There

I know it’s not easy to support someone with a chronic condition. It can be frustrating, confusing, even heartbreaking. But your effort matters more than your perfection. I don’t expect you to have all the right words. Just showing up, over and over, speaks volumes.

Fibromyalgia is a long road, filled with uncertainty. But when I look around and see people who care, who choose to stay close even when it’s hard, that gives me strength.

Frequently Asked Questions

What should I avoid saying to someone with fibromyalgia?
Avoid phrases like “You don’t look sick,” “It’s all in your head,” or “Everyone gets tired.” These minimize the real struggles of chronic illness.

How can I be supportive if I don’t understand the illness fully?
Listen, validate their feelings, and offer help without assuming what they need. Just being there and asking “How can I support you today?” can be enough.

Why do people with fibromyalgia cancel plans often?
Because symptoms can fluctuate. Pain, fatigue, or mental fog can become overwhelming with little warning, making it hard to follow through even on simple plans.

Is it okay to talk about the illness, or should I avoid it?
If you’re close to someone with fibromyalgia, it’s okay to talk about it respectfully. Let them take the lead. Ask if they’re comfortable sharing, and be a compassionate listener.

Can people with fibromyalgia still enjoy social life and relationships?
Yes, absolutely. They may need to do things differently or pace themselves, but meaningful relationships are still very possible and important.

Does fibromyalgia affect mood or mental health?
Yes. Chronic pain and fatigue can contribute to anxiety, depression, and emotional exhaustion. Understanding this aspect can help you offer deeper, more empathetic support.

For More Information Related to Fibromyalgia Visit below sites:

References:

Fibromyalgia Contact Us Directly

Click here to Contact us Directly on Inbox

Official Fibromyalgia Blogs

Click here to Get the latest Chronic illness Updates

Fibromyalgia Stores

Click here to Visit Fibromyalgia Store