Living with fibromyalgia is like carrying an invisible weight that never goes away. On the outside, I look fine — maybe even put together — but on the inside, my body is constantly aching, my energy is depleted, and my mind feels foggy. It’s a daily struggle that most people can’t see, and because of that, they often don’t understand it. But fibromyalgia is real, and it affects every part of my life — physically, emotionally, and mentally.
During Fibromyalgia Awareness Month, I want to finally share what it’s really like to live with this illness. Not just the medical facts, but the emotional and personal truth of what it feels like to exist in a body that betrays you while the world continues to question you.
The Pain You Don’t See
Fibromyalgia is full-body pain that doesn’t go away. It’s not limited to one area, and it’s not always the same kind of pain. Some days it feels like sharp stabbing; other times, it feels like deep soreness that spreads through every muscle. There are moments when even the weight of clothing makes my skin feel bruised. But nothing looks wrong. There’s no cast, no redness, no swelling — just a smile I’ve learned to wear to avoid more questions.
I’ve canceled plans, missed classes, and turned down invitations, not because I didn’t want to be there, but because my body physically couldn’t keep up. And no matter how hard I try to explain it, I’m often met with confusion or doubt. That’s the reality of invisible pain: it forces you to defend something you’re already exhausted from surviving.
More Than Just Fatigue
I don’t just feel tired. I feel drained in a way that’s hard to describe. It’s the kind of exhaustion that sleep doesn’t fix. Even after eight or ten hours of rest, my body still feels like it’s been through a war. There are times when I’m sitting in class or trying to focus on a conversation, and I just can’t think clearly. That’s what we call “fibro fog” — where your brain feels disconnected, like your thoughts are trapped behind glass.
It’s frustrating when people assume I’m lazy or unmotivated. I want to show up. I want to do all the things I used to. But when both my body and mind are crashing, there’s only so much I can push through before it takes everything out of me.
Misconceptions That Hurt
There’s something especially painful about being in pain and not being believed. People don’t always say it outright, but the doubt shows in their faces, in their tone, and in their responses when I try to open up. It’s the subtle comments that stick with me the most — the ones that suggest maybe I’m just stressed, too young to be sick, or that if I just exercised more, I’d feel better. There’s this underlying assumption that I’m either exaggerating or not trying hard enough to feel normal.
Even though fibromyalgia is more widely recognized now than it once was, the stigma hasn’t disappeared. There’s still this idea that chronic pain needs to be visible to be valid. And when people don’t see a cast or scars, they assume you’re fine. But I’m not. I’ve just learned to live with it in silence because it’s easier than having to defend myself every time.
What makes these misconceptions so damaging is how they erode your ability to advocate for yourself. I’ve doubted my own experiences, minimized my symptoms, and avoided speaking up — just to avoid being dismissed. When you’re already fighting to stay afloat, the last thing you need is someone making you feel like you’re imagining the water.
The Emotional Toll
Living in a body that constantly fights against you does something to your mind. I’ve felt hopeless, overwhelmed, and deeply alone. There are days when I cry, not because of something that happened, but because I’m tired of pretending I’m okay. It’s hard to explain the kind of mental exhaustion that comes from managing a pain that you have to always smile through while constantly wondering if people believe you.
What people don’t realize is how much fibromyalgia can change your relationship with yourself. I’ve questioned my worth. I’ve felt like a burden even when no one has said it out loud. The guilt of not being able to show up like I used to — missing events, forgetting things, canceling plans — eats away at you over time. It’s not just the missed moments that hurt; it’s the fear of being forgotten or replaced because of them.
The emotional toll isn’t just from the pain. It’s from the isolation, the loss of independence, and the constant apologizing for things outside of your control. It’s grieving the life you had before while still trying to hold onto the things and people that keep you grounded. And some days, that grief feels heavier than the pain itself.
What I Wish You Knew
I wish more people understood that fibromyalgia isn’t something I can just push through. It’s not a mindset issue or a motivation problem. Some days, I’m doing the absolute most just by getting out of bed or showing up. That is an effort. That is a strength. I don’t want pity, but I do want understanding. I want people to stop assuming and start listening.
I wish people knew that I don’t want to cancel plans. I don’t want to miss out on things. I’m not being flaky — I’m just trying to protect what little energy I have left. I wish people understood that their comments, even the well-meaning ones like “you look fine today,” can feel dismissive when they don’t know how hard I had to fight just to get out the door.
Sometimes, I wish I didn’t have to explain myself at all. I wish I could just exist without being questioned, doubted, or told what to try next. Because chances are, I’ve already tried. I’ve already researched. I’ve already pushed myself way beyond my limit.
So if you care about someone with fibromyalgia, believe them. Be patient. Ask how you can support them without assuming what they need. Sometimes it’s a hug, sometimes it’s space, sometimes it’s just knowing that someone sees the pain we work so hard to hide.
Raising Awareness, Finding Strength
May is Fibromyalgia Awareness Month, but this isn’t something I think about just once a year — it’s my reality every single day. Speaking up about this isn’t easy, but it’s necessary. The more we talk about invisible illnesses, the less people like me will feel alone in them.
There’s power in being honest. There’s strength in vulnerability. And there’s hope in knowing that sharing your story might help someone else find their voice, too. Fibromyalgia has taken a lot from me, but it’s also made me more compassionate, more resilient, and more determined to be seen, even when my illness tries to keep me hidden.
Fibromyalgia is not just pain. It’s not just tiredness. It’s not just something I can snap out of. It’s a condition that affects every single part of my life. But even with everything it’s taken from me, I’m still here. I’m still fighting. I’m still showing up on the good days and the bad ones.
If you’ve read this, thank you. Thank you for choosing to understand instead of assuming. And if you’re someone who’s living with fibromyalgia or any invisible illness, I see you. I believe you. And I promise, you’re not alone.