Living With Fibromyalgia: The Parts People Never See

Fibromyalgia is often described as a chronic pain condition.

And it is.

But, what many people do not realise is that the pain is only one part of it.

Fibromyalgia can come with exhaustion so severe that it knocks people off their feet for hours, days, or even weeks. It can come with fibro fog that makes your own brain feel unfamiliar. It can come with chest pains that can be so severe they result in debilitating agony, nerve pain, heightened pain responses, sleep issues, and a long list of additional health challenges that often overlap alongside it.

And perhaps one of the hardest parts of all...

is how invisible much of it is.

Someone with fibromyalgia can look completely fine while internally trying to hold themselves together.

The exhaustion people don't fully understand

One of the things I wish people understood about fibromyalgia is that fibro fatigue is not the same as simply "feeling tired."

People often try to relate by saying:

"I know what exhaustion feels like."

And I understand why they say it. Most people are trying to comfort someone by connecting their experience to something familiar.

But fibromyalgia exhaustion is not the kind of tiredness that disappears after a good night's sleep or a quiet afternoon, and it should never be confused with laziness.

Sometimes if feels like the body simply stops cooperating.

There is something many people with chronic illness talk about called Spoon Theory.

The idea is simple:

every day you wake up with a set amount of spoons (energy)

Some days you have more spoons.

Some days you have fewer.

You never know how many you will be given.

And once they are gone... they are gone.

It is not a case of "pushing through."

The consequences of overdoing things can last for days or even weeks afterwards.

Fibro fog can feel frightening

Pain is only part of fibromyalgia.

Fibro fog can feel like being mentally underwater.

I can read the same paragraph repeatedly and still not understand what I have just read. I can forget words mid-sentence. I can struggle to process instructions or hold onto information that would have once been simple.

And the more exhausted I become, the worse it often gets.

To the outsider, fibro fog can often be mistaken for the onset of Alzheimer's disease, carelessness, distraction or even stupidity. And added stress only makes things worse.

But the reality is far more frightening than even that.

It is difficult to explain what it feels like when your own mind suddenly stops feeling reliable.

In the early years, before and a couple of years after diagnosis, it completely destroyed my confidence.

The parts people don't see

One of the quietest losses that can come with chronic illness is the loss of trust in your own body.

The unpredictability.

Not knowing what version of your body you are going to wake up in.

Not knowing whether making plans today will cost you physically tomorrow or even the next week.

Not knowing whetherr your body will cooperate with the life you are trying to build, or rebuild.

Before fibromyalgia, I worked in a completely different profession.

Art was something I enjoyed occasionally, but it was not my career.

Fibromyalgia changed the course of my life completely.

And while there has absolutely been unimaginable grief within that process, there has also been some rebuilding.

Art gave me a way to rebuild

Art did not cure my fibromyalgia.

It did not remove the pain.

But it gave me, and still continues to give me, calm inside difficult days.

It gave me purpose.

Hope.

Identity.

A reminder that I still existed beyond my illness.

Over time, I stopped trying to rebuild the exact life I had before and started building a life that honoured both my limitations and the things I was still capeable of creating.

That shift changed something in me.

There are still difficult days.

Still painful days.

Still days where the fibro fog makes even simple tasks feel overwhelming.

But art gave me a way to reconnect with myself again in a way nothing else has.

Not the version of me that existed before fibromyalgia.

The version of me who is living with fibromyalgia.

If someone you love has fibromyalgia...

Listen to them.

Not to compare their life experiences to your own exhaustion or pain etc...

Not to minimise what they are experiencing.

Not to explain it away somehow.

Just Listen.

Because fibromyalgia presents differently in every person who lives with it.

And just because you may know one person living with fibromyalgia does not mean you understand every experience of it.

Sometimes the most powerful thing you can give someone with chronic illness is simply this:

Listen to them. Believe them.

A quiet ending

May is Fibromyalgia Awareness Month.

And while awareness matters, understanding matters too.

To those quietly living alongside fibromyalgia:

I see you.

And to those trying to better understand someone who lives with it:

thank you and keep trying.

That love and effort matters more than you may realise.

💬

If you live with fibromyalgia, what is one thing you wish more people understood about it?