Being "Chronically" Misunderstood

There’s a particular kind of loneliness that comes with being chronically misunderstood, which many illnesses like mine are.

It’s not just about people not “getting” your illness, it’s the constant questions, the unsolicited advice, the blank stares when you try to explain why you had to cancel plans (again).

And the worst part?

I have ended up managing their discomfort on top of my own pain.

“Oh, what is fibromyalgia exactly?”

“Well… it’s a chronic pain disorder that affects the nervous system. It causes widespread pain, fatigue, brain fog, and a whole list of other symptoms that don’t always show up on tests.”

“How do you get that?”

Honestly? No one knows exactly. It’s believed to be a mix of genetics, trauma, nervous system dysfunction, and stress-related triggers. For many of us, it develops after something big—like an accident, illness, or years of chronic stress or trauma.

“Is there a cure?”

No. There’s no cure. There are treatments that help, but it’s a full-time job trying to figure out what your body will tolerate. Medications, physical therapy, rest, pacing your energy, avoiding triggers… and even then, there are flares you can’t predict or control.

And that entire conversation alone then leaves me with little to no spoons (spoons is a term we refer to as energy expenditure in the chronic illness community, look it up).

Living with fibromyalgia isn’t just painful—it’s exhausting.