Living With Fibromyalgia When Every Forecast Feels Like a Warning
The weather is becoming an increasingly brutal trigger for my fibromyalgia. Each shift in temperature, each plunge in air pressure, feels like a storm inside my body. On days like this, I feel so disassociated I barely recognise myself. My blood feels like it’s made of shards of glass, sharp and impossible to ignore. My unofficial new name has become Cancel McCancelface, because plans—no matter how carefully arranged—often collapse. I’ve genuinely begun considering a sort of hermitage lifestyle, because the unpredictability of the outside world no longer aligns with the unpredictability of my body.
My ribs ache as though someone has been prying them apart while I sleep. My legs throb like I have climbed a mountain in the night. I wake up tired. I wake up in pain. I wake up as though rest never happened at all. This is the starting point for many of us with fibromyalgia: a baseline of exhaustion layered with constant physical distress. I’m medicated to high heaven and it rarely makes a dent.
For millions of people globally, this is daily life. And unless the medical world takes a leap forward—not just in treatment but in recognition—this is how it will continue. The first breakthrough has to be simple but meaningful: medical professionals must universally acknowledge that fibromyalgia is real, disabling, and deserving of serious research. I am just one person living in this body, but there are millions like me worldwide, each fighting their own private battle.
What Fibromyalgia Really Is
The Facts Behind the Pain
Fibromyalgia is a chronic disorder characterised by widespread musculoskeletal pain, fatigue, sleep disturbances, cognitive issues (“fibro fog”), and heightened sensitivity to stimuli such as temperature, noise, or touch. Because it doesn’t show up on traditional diagnostic tests, the condition was historically dismissed as psychological or exaggerated. That misconception caused decades of underdiagnosis and neglect.
Today, globally recognised organisations estimate that:
- Fibromyalgia affects between 2% and 4% of the population.
- Women are diagnosed far more frequently than men—some studies suggest at rates up to seven times higher.
- As many as 75–90% of diagnosed cases occur in women, although men and children can also develop the condition.
- Fibromyalgia is one of the most common chronic pain disorders, yet research funding remains disproportionately low compared to the number of people affected.
- It often coexists with other conditions such as chronic fatigue syndrome, rheumatoid arthritis, irritable bowel syndrome, and migraines.
- For many people, fibromyalgia symptoms fluctuate with weather changes, stress levels, sleep quality, and hormonal shifts.
These statistics reflect what millions already know: fibromyalgia is not rare, nor is it imaginary. It is a global health issue that demands meaningful attention.
The Burden of Becoming Smaller
When Chronic Illness Reshapes the Future
A huge swathe of humanity simply can’t be the people they want to be because their bodies revolt against them. Fibromyalgia manifests pain where no injury exists, and it strips away the parts of yourself that once felt permanent. Dreams, goals, and identity become filtered through the lens of pain and exhaustion. Your world shrinks. Your future narrows. Life becomes a series of negotiations rather than choices.
For people who don’t live it, this might sound dramatic. But chronic illness creates a kind of grief that never fully resolves. You mourn the version of yourself you once were while trying to accept the version that remains.
Fibromyalgia doesn’t just alter how you feel physically—it changes how you imagine your life. Everything becomes measured against cost. Pain cost. Energy cost. Emotional cost.
Mental Health and the Spoons That Never Add Up
Depression, Medication, and the Weight of Masking
Before chronic illness entered my life, I had already experienced bouts of depression. Because of that, I manage it with medication, which helps prevent additional spirals. But even with support, living with fibromyalgia requires constant emotional labour. It takes too much precious energy to lament what you’ve lost or to grieve endlessly for the parts of yourself that chronic illness has carved away.
Instead, you scrape together whatever spoons you can find and try to appear functional—not because you’re fine, but because the world expects you to be. You mask the pain to protect your reputation, to avoid letting people down, to still seem kind, pleasant, and present. You do it because showing how bad it really is feels too vulnerable and too exhausting.
But masking becomes impossible when the weather turns. The body refuses to cooperate. No amount of pretending can hide the collapse.
When Weather Becomes the Enemy
Living in the North East and Bracing for Every Storm
I live in the North East of the UK, a region known for harsh winters, biting winds, and sudden changes in pressure. In this climate, weather becomes an adversary. Storms roll through in relentless succession, leaving almost no room for relief. This year, I feel like I’ve been under siege. One storm passed, only to be replaced by a polar front. The air feels heavy and sharp, and my body interprets these atmospheric shifts as pain, exhaustion, and mental fog.
The truth is that I wrote this today to keep myself from crying. Pain has a way of eroding emotional resilience, especially when there’s no break in sight. A month off from my own body would be revolutionary. Even being able to borrow an avatar for a week—something digital and painless—feels like a fantasy worth dreaming about.
As I write, my clarity fades. The brain fog rolls in thicker. Pain pulls my attention away from the words I’m trying to form. But the act of writing carves out a small space where the pain feels acknowledged rather than hidden.
A Note About Author Jo Howell
The Voice Behind the Words
Jo Howell is a North East–based artist, writer, and photographer known for her raw honesty, dark humour, and creative resilience. Her work blends personal storytelling with social commentary, particularly around disability, chronic illness, and lived experience. Through her art and writing, she sheds light on the invisible realities of fibromyalgia and other long-term conditions, using her platform to foster understanding and advocate for better support. Jo’s voice is unapologetic, vulnerable, and deeply human—offering connection to those living similar lives and insight to those who aren’t.
Why Recognition Matters
The Gap Between Prevalence and Understanding
One of the most painful aspects of fibromyalgia isn’t just the daily symptoms—it’s the continued misunderstanding surrounding the condition. Despite affecting millions globally, research into fibromyalgia remains limited, and treatment options are often inadequate. Many patients wait years for diagnosis. Some are dismissed entirely. This leads to delayed care, psychological distress, and unnecessary suffering.
Recognition isn’t just a matter of pride or validation. It’s a matter of progress. Without proper acknowledgement from the medical world, funding remains low, studies remain sparse, and those living with fibromyalgia remain stuck with outdated or ineffective treatment models.
The medical community has made improvements, but there is still a long way to go.
The Plea at the Heart of This
Dear medical peeps,
Please figure something out for us.
Cheers,
Jo
It’s a simple request. A plea born from exhaustion, solidarity, and the desire for a future where pain isn’t the defining lens of life. Those of us living with fibromyalgia aren’t asking for perfection—we’re asking for possibility. For research. For options beyond the endless cycle of medications that may dull symptoms but rarely restore quality of life.
We are asking for hope rooted in science, not fantasy.
Conclusion: Writing Through the Fog
It’s difficult to see beyond the pain today. The symptoms are intensifying, the weather is worsening, and the brain fog feels like it’s stealing more of me with every sentence. But writing this piece has created a small space where I feel seen, even if I’m the one doing the seeing.
To anyone reading who lives with fibromyalgia or another chronic illness: you are not alone. Your frustration, your grief, your exhaustion—they are valid. Your persistence is extraordinary even on days you can’t feel it.
To everyone else, especially those with the capacity to influence research and healthcare: please listen. Fibromyalgia affects millions. It limits lives. It deserves your attention.
The weather will continue to turn. The storms will continue to roll in. But perhaps one day, with proper research and recognition, the internal storm won’t be quite so relentless.
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