It’s EDS, not in our heads…

Posted April 24, 2021

It’s EDS, not in our heads…

This battle is real, that you don’t understand.

In pain each morning this makes us sad.

But you don’t believe us, you think we are mad.

Our brain is foggy, our joints are sore.

When we stand up, lightheaded, we think we will fall.

Heart palpitations, blood pressure drops to the floor.

But still, you question the truth of it all.

Our joints click and crack, as we try to walk.

If we are not careful they lock rigid and more.

Dislocations and tearing, swelling, and strains.

Now we are suffering because you’re uneducated, untrained.

You’re looking for horses, but we are zebras untamed.

We are different from others, we are genetically unique.

Why should we suffer, because you’re trained not to see?

For years we are left, to suffer alone.

Told it’s all in our heads and sent off home.

It’s time to educate, all our consultants, GPs.

We are not a mystery, we have a genetic disease.


Vinny Macwhinnie, 2019.

Categorized in: