Living With Fibromyalgia and the Pain of Being Misunderstood

According to Webster's dictionary, GRACE is defined as "the exercise of love, kindness, mercy, favor and the disposition to serve another." COMPASSION is defined as "a feeling of sympathy or concern for someone else's suffering, often accompanied by a desire to help alleviate that suffering." And finally, EMPATHY is defined as "the ability to understand and share the feelings of another."

The one thing that I have learned in the nine years that I have lived with fibromyalgia is that not only do people not understand fibro, and some of the complexities that comes along with it, but they don't even try to, nor do they care. Now don't get me wrong, this is not to say that 100% people fall under these categories, but there's enough for me to be moved to write this blog. Because fibromyalgia can't be "seen" people automatically think that those living with it are full of shit, exaggerating, putting on, or just plain lying.

Living with fibromyalgia is hard enough—the widespread pain, the stiffness, the neverending fatigue, the brain fog that makes even simple tasks feel monumental. But what often hurts just as much, if not more, is the lack of grace, compassion, and empathy from the world around us. In-tune coworkers, friends, even family from time to time, can slip into coming across like they don't care, like they're irritated or put off, or feeling inconvenienced. Fibromyalgia is an invisible illness, and because people can’t see it, they struggle to believe it. That disbelief can feel isolating, frustrating, and at times, downright cruel.

Fibromyalgia doesn’t show up on scans or blood tests. Diagnosing can be tricky. It certainly will not kill you, so it's not a death sentence. Every fibro case shows up different from others. Some say it's progressive, but I personally don't believe that to be true. And the list of symptoms and side effects are exhausting. Because you can't see it or touch it, for many, that makes fibro even more "less real."

I personally have heard things such as:

• “You're being so melodramatic.”

• "Is it necessary for you to sit your entire shift?"

• “I don't know where your mind is at.”

• "I'm so tired of repeating myself...weren't you listening?"

• Subtle jabs about my level of intelligence and competence.

While these comments are often not intended to hurt, they DO! They minimize what we live with every day. They overlook the deep reality of a condition that impacts every aspect of our lives, from our ability to work to our relationships and even our sense of self.

The emotional toll from constantly being doubted or dismissed chips away at our confidence. I start questioning myself, my abilities, and sometimes my sanity. Imagine forgetting even the smallest things multiple times, every single day, or sleeping "well" every night, only to be tired all day every day. I find myself wondering if maybe I'm overreacting. That self-doubt is one of fibromyalgia’s cruelest side effects. We’re not just fighting our bodies—we’re fighting to be believed.

And I can't forget the guilt. Mood swings. They are the worst. Sometimes I fly off the handle for some of the smallest things. Sometimes the way I respond is typically indicative of how I'm feeling, or because of an impending flare. I don't mean any harm, but after the fact, the damage is already done. Being married to a very touchy feely husband has it's challenges. My husband craves touch literally all day every day. That is not my love language by any stretch; however, I feel guilty if his caress hurts, or his hand on my back or arm around my waist is pushed away. All of it adds a layer of emotional pain that most people never see.

Those living with fibromyalgia want you to know:

• We’re not lazy. We’re managing a chronic condition (I do not use the word "illness") that demands rest and recovery as best as we possibly can.

• Just because we look “okay” today doesn’t mean we’re not in pain.

• We are not stupid or incompetent. We're battling cognitive issues that sometimes mimic dementia.

• Grace, compassion, empathy and patience go a long way. A simple “I’m here for you” means everything.

• Showing us that even if you don't fully understand fibromyalgia, you're not afraid to ask questions for better understanding. This shows a willingness to offer us grace and compassion.

  Grace, compassion and empathy...that's all any fibrowarrior asks for.

  
  

We live in a world that often lacks empathy; therefore, we have to double down on being kind to ourselves. That means listening to our bodies without guilt. It means setting boundaries, even when it’s uncomfortable. And it means surrounding ourselves with people who offer the grace and understanding we deserve.

Fibromyalgia may be invisible, but we are not. Our pain is real. Our struggles are real. And so is our strength. For anyone out there who feels unseen or unheard—you are not alone. Keep advocating for yourself. Keep speaking your truth. And never forget: you are worthy of grace, compassion, and empathy...especially from yourself.