The Fibro Files Ep. 1

Invisible Doesn’t Mean Imagined

A new day and a new dawn. Birds are singing outside. Bright sunshine as the sun begins its journey across the sky. The cozy bed that cradles my body in clothed comfort. Today is another battle on the warfront that is fibromyalgia. Even before opening my eyes, I take stock of the battlefield. Do I have a headache, are the birds too loud, or can I think clearly? Can I shift my body without adding more pain, or will the slightest movement lead to a lightning strike of pain and the start of sensory overload? Is this a “good” day? Will it last?

Some days I feel “normal,” I can walk a mile with little to no effort (I might pay for that later). Other days, brushing my teeth and putting my hair up feels like a full-body workout (if I can even get out of bed). I've had moments when I have fixed someone's computer, written an entire 1st draft, and dug up artifacts in the field - all while feeling like my body was quietly on fire, rolling across a bed of nails, and severely bruised. Somehow, I have learned to function with immeasurable pain that is unpredictable in its severity and length of time I feel it.

From an onlooker's perspective, I "look perfectly fine." And that's exactly the struggle that is an invisible illness.

The Illusion of Function

Fibromyalgia (Fibro) is an invisible illness. It doesn't come with bandages, a cast, or anything obvious in the way a sufferer looks. There is no obvious bruise, rash, or scrape that proves a flare is there, no clear marker of pain, no timeline for when it might "end." No way to predict when it will "start" again. People see me standing, smiling, laughing, and engaging in life, and assume I'm better (or that I was never really sick in the first place).

But functioning doesn't mean thriving. And pain doesn't always look like agony, a twisted face, a grimace, or a limp.

Living with fibromyalgia has taught me how often people expect you to "prove your pain" to take you seriously, to even believe that there is something wrong with you. I've had to fight for my diagnosis, for understanding from strangers, and for simple patience from employers. I've been told to "just get outside and exercise more," to "think positively," that "it's probably just stress," "you’re too young to be so sick," or worst of all, "it's all just in your head." (Spoiler: fibromyalgia is not just in your head, and it's never just stress.)

“Normal” to fibro sufferers is something completely different than “normal” for everyone else. We have a constant amount of pain, our baseline, that we can tolerate while going through the motions of life. Each person’s baseline is different, and the typical pain scale does not capture our struggles. In the “normal” pain scale, a healthy person would be at 0, no pain. A fibro sufferer, myself included, is somewhere between a 6 (think about pain all the time and give up many activities because of it) and a 7 (in pain all the time, and it keeps me from doing most activities). I call myself a “functioning 7” so medical staff and others can try to understand what a “normal” or “good” day is like for me.

The chronic illness community has developed its own pain scale from 0 to 14+ (as one example). There are multiple scales that have been created to try to articulate our pain to others. In this example, a score of 0-3 would be a once in a blue moon (though rarer than a real blue moon) when we feel no pain. I think the last time I had a day like that was back in 2005, so memorable and rare that I can picture it clearly. A rating of 4-6 would be our average day, our “normal.” A 7-10 is a slightly worse day, still functioning, just limited. You will start to see our “in pain” face and body language when we hit an 11-13. This is when we can no longer mask our pain, our personalities become quiet, and all we can focus on is trying to breathe through the pain and get through our day. I have gone through entire days of work at this pain level. It might not be my best work, but I was able to at least do something. At a 14+, we are lucky to even get out of bed. Our breaking point has been reached, and we have been overwhelmed by our pain. Just breathing is difficult, and we can think of nothing but our pain. I rank my flares as mild (7-10), bad (11-13), and severe (14+).

The Invisible Weight

One of the hardest parts of living with fibro isn't even the pain - it's the disbelief. The casual dismissals. The awkward pauses when I mention my condition. People's subtle implication that if I were just stronger, tougher, less sensitive, more proactive, or more optimistic, I wouldn't be this way. Others seem to still think that fibromyalgia is something solvable, something that can be fixed, and something that can be cured. It’s not, though it can be managed.

Fibromyalgia is still a rather young illness. The first documented mention of this illness was called Fibrositis in 1904. It was only defined as an inflammation of the fibrous tissue, a vastly different definition from what fibro is today. The description was altered in 1972 to widespread pain and tender points, and the name was changed to Fibromyalgia in 1976. The first clinical study was conducted in 1981 to determine the location of the tender points used to diagnose fibromyalgia. The first effective medication emerged in 1986, and in 1990, the first American Rheumatology criteria were published for the chronic disease.

Research into fibromyalgia is ongoing, and more discoveries are being made every year about this mysterious affliction. I will do a more in-depth dive into the history of fibro and what is known and how it has changed over the years in a future post. There is a lot of ground to cover, even if the timeline is small compared to other illnesses. There are also a lot of other illnesses and diseases that go hand-in-hand with fibromyalgia, though the combination of which is different for each sufferer.

Despite what others say, I am strong. Immensely so for facing each day with the guarantee of pain and still moving forward, towards my future and dreams. I keep working, writing, exploring, and living. All on my own terms. Strong enough to learn how to pace myself, to rest without guilt (still a work in progress on that one), to ask for help (another work in progress), and to listen to my body when it tells me "no more, I need to rest."

Let's Talk About It

In the year of 2025, fibromyalgia is becoming more known and more accepted as a chronic illness that affects a person’s ability to live and their quality of life. Even just a few years ago, I would get disbelieving looks if I mentioned my disease. Even with the more widespread knowledge, I still receive unsolicited advice on how to “cure” myself. I am often being told how or what to eat, ways to exercise, and that I should just keep positive. Believe me, I have tried most, if not all, of what they are recommending. Sometimes, though, someone says something just a bit different, and it can help me find something that really does help with my symptoms (as numerous as they are).

This blog series, The Fibro Files (can you tell I like The Forensic Files), is where I'll tell my truth - raw, real, but with hope sprinkled in. I'll talk about flares, brain fog, symptoms, co-morbidities, the tools that help, the bad days that don't, and how I keep my head above water, showing up every day for myself and my future.

Maybe you're here because you live with fibromyalgia too. Maybe it's another chronic illness. Or maybe there is someone in your life who struggles with an invisible demon (because these illnesses are our demons). No matter what, you are welcome here. Welcome to read, learn (hopefully), comment your own truths, and feel comfortable in the fact that you are not alone in this. There are so many people struggling with chronic conditions. We are a community that supports and uplifts each other. I hope this blog will be one of those spaces.

Living with fibro is like being stuck in a mystery novel where your body is the unreliable narrator—was it the weather, the stress, or that one piece of cheese you dared to eat? Who knows! But one thing’s for sure: this journey is easier when we share the weird, the wobbly, and the wins. Got a flare-up survival hack, a “foggy brain” fail, or a comfort item you swear by? I want to hear it! Drop your story (or even just your favorite snack) in the comments. And if you're into real talk, a few laughs, and the occasional overshare, hit subscribe and join me on this beautifully unpredictable ride. This cozy space in my den is for all of us who carry things quietly, who are tired of explaining, who keep moving forward - even when the world misunderstands us and the burdens on our shoulders.

Next time in The Fibro Files:

I'll share the first time I knew something was wrong. My journey to diagnosis. And how life changed when I had a name.