It wasn’t the kind of tired that sleep could fix. I’d wake up more drained than I went to bed. My body felt weighted, like walking through thick air. Even simple tasks like brushing my teeth took effort. When people asked if I was okay, I said, “Just tired.” They nodded and moved on. But this wasn’t just tired. This was something else. Something that stayed in the muscles, in the bones, under the skin. It lingered. It never left. And no one saw it.
My pain moved, and that made people question if it was even real
Some days it was my shoulders. Other days it was my lower back. Sometimes it felt like pressure behind my knees or a burning in my arms. When I described it to doctors, they frowned. Pain is supposed to stay in one place. Or come from an injury. Mine didn’t. It migrated. Unpredictably. I stopped describing it. I just said “everywhere.” But even that didn’t sound believable. How can pain be everywhere and nowhere specific? I asked myself the same question too many times.
I was told to reduce stress, but my symptoms had nothing to do with stress
Doctors asked if I was anxious. If something in my life was overwhelming me. They suggested yoga, better sleep hygiene, fewer commitments. I tried everything. But the symptoms stayed. I wasn’t avoiding responsibility. I wasn’t exaggerating discomfort. I knew my own body. This wasn’t about mood or mindset. It was something physical that no one could measure. When everything is invisible, people assume it’s in your head. That assumption can be more painful than the condition itself.
Blood tests came back normal, and that made everything worse
I hoped something would show up. Just one marker out of range. Something to explain all this. But every test came back normal. Thyroid, iron, vitamin D, inflammation—all fine. That word “fine” felt like a dismissal. Like I was overreacting. I left appointments with no answers, just more referrals. Being medically unremarkable while feeling completely broken is its own kind of isolation. Normal results don’t mean nothing is wrong. They just mean it’s something we haven’t learned how to measure yet.
I started doubting my own experience because no one believed me
The more I tried to explain, the more disconnected I felt. Friends said I looked okay. Colleagues asked why I was so tired all the time. Even family started to question my effort. I heard words like “lazy,” “dramatic,” “too sensitive.” Eventually, I stopped mentioning the pain. But it didn’t go away. I started asking myself if I was exaggerating. Maybe I was weak. Maybe this was how everyone felt and I just couldn’t handle it. That kind of doubt changes how you see yourself completely.
It took years before anyone said the word fibromyalgia
No one mentioned it at first. Not even as a possibility. It was as if the word itself was off-limits. I went to five doctors. A neurologist. A rheumatologist. Two general practitioners. Finally, one physician said it: “It might be fibromyalgia.” It didn’t sound definitive. It sounded like a guess. But it gave the pain a name. It gave the fog a framework. I went home and searched the word. The symptoms matched. The fatigue. The tenderness. The unpredictable pain. But the answers weren’t comforting. Because no one really knew what to do with that diagnosis.
I realized the medical system still doesn’t know what fibromyalgia actually is
There’s no test for fibromyalgia. No scan. No biomarker. Diagnosis is based on exclusion. That makes it hard to believe—even for the people living with it. It feels like a label used when nothing else fits. Doctors admit the gaps in understanding. Treatments are trial and error. Explanations are vague. Nervous system sensitivity. Pain processing disorder. Central sensitization. Each phrase sounds clinical but incomplete. When science doesn’t have certainty, people lose patience. That uncertainty leaves patients floating, without footing.
The hardest part is explaining something you don’t fully understand yourself
People ask what fibromyalgia feels like. I try to explain it simply. But there’s no simple answer. It’s not one pain. It’s not one fatigue. It’s layers of discomfort stacked on each other, changing daily. Some days my arms ache. Others, it feels like gravity has doubled. I forget things mid-sentence. I can’t find common words. Lights hurt my eyes. I’m cold when it’s warm. I sound unreliable even to myself. So I stop explaining. It’s easier to say “I’m just not feeling great” than to detail the invisible.
I’m not lazy, I’m pacing myself through symptoms no one else can see
From the outside, I look fine. I don’t use a cane. I go to work. But every movement is calculated. If I clean the kitchen, I might need to lie down for an hour. If I go to dinner, I cancel plans the next day. That’s not laziness. That’s energy budgeting. Fibromyalgia doesn’t stop me completely—it just forces a different rhythm. A quieter one. One that other people mistake for disinterest or passivity. It’s neither. It’s survival.
Medication helps sometimes, but it’s not a cure
I’ve tried pain relievers, sleep aids, antidepressants, anticonvulsants. Some helped briefly. Others made things worse. Each new prescription is a gamble. Will the side effects be worse than the symptoms? Will it work for a week and then stop? There’s no roadmap. Some people improve. Others don’t. I keep trying because giving up isn’t an option. But it’s hard to stay hopeful when progress feels like chance. Medications manage symptoms. They don’t remove them. And that’s something few doctors explain clearly.
I wish more people understood that fibromyalgia doesn’t always look dramatic
It’s not like a broken bone. There’s no cast, no bruising, no external damage. That makes it hard to validate. If I cried every day, maybe people would believe me. But I don’t. I live quietly with it. I smile. I show up. I work. But under that effort is constant adjustment, constant management. Pain that’s visible often earns more compassion. Fibromyalgia asks you to trust what can’t be seen. That’s a hard ask—for everyone involved.
I didn’t know how political this diagnosis would feel
Mentioning fibromyalgia in some circles invites skepticism. Even among healthcare professionals. Some call it overdiagnosed. Others don’t believe in it at all. That disbelief spreads. Employers, family members, even strangers think it’s an excuse. But the suffering is real. That’s what’s hardest. Living with something real that’s treated like fiction. It changes how you move through the world. It makes every conversation feel like a defense. Like you have to earn the right to be believed.
There are better days, but they never come without effort
Good days aren’t free. They come after rest, preparation, and careful planning. If I want to do something joyful, I have to build space for recovery. That means saying no to other things. It means rescheduling. It means sacrifice. Better doesn’t mean easy. It just means manageable. Those days remind me who I was before the symptoms took over. They’re rare, but they’re real. I hold onto them like proof that I still exist under the ache.
I’m not asking for pity, just recognition
I don’t want to be pitied. I want to be seen. Believed. I want people to stop assuming they know how I feel. Or worse, telling me how I should feel. I want the freedom to say “I can’t” without guilt. I want to exist without performance. Chronic illness is not a failure of will. It’s a condition of the body. Understanding that isn’t hard. It just requires listening. Really listening. Without fixing. Without judging. Just hearing.
Source: Rheumatologist in Dubai / Rheumatologist in Abu Dhabi