Blog

By Peter Yanefski
Communication and Operations Coordinator

When diagnosed with a disease,
with a cough or a sneeze,
People can hear it, or see it on your sleeve.

When diagnosed with something rare, when unknown or unseen, many don’t care.
Even though a burden is bidden, it’s hard to share, when its hidden.

If its hurting skin, people stare
When its bones, they say “where?”

Such is the challenge when something that’s physical is somewhat ‘invisible’

The doctors and nurses, don’t know what to do
No further an answer when an appointment is through

If they miss it on their test, they think surely your jest
Or your brain needs a rest

You know how it is, you know that its real
The problem is there, even when only you feel

These are the thoughts in your head
When you feel pain or weakness, and now, you feel dread.

When it hurts in your bone and you think you’re alone¹, there’s a rare there.
When your symptoms cause mystery, not solved by your history, there’s a rare there.

When your body starts to spiral, and the answers not viral, there’s a rare there.
When the average treatment doesn’t weaken, the disease isn’t beaten, there’s a rare there.

Where community works, to quell what is hurt, there’s a rare here.
Where your friends and your family show care to no end, there’s a rare here.
Where your advocates live, and there’s hope you can give, there’s a rare here.

This Rare Disease Day, share in any way you like, in a poem, in a video, a picture or a song.
There is no method of sharing inherently wrong.

There are those who feel there is no hope
A long journey ahead, and an infinite slope.

Your words mean the world, to show that you share, their rare.

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What do you wish people understood about the rare disease experience? You can send your story in written form with a photo or a 30 second video (in portrait) to Peter@histio.org expressing how having the rare disease of a histiocytic disorder makes you feel, and if any Rare Disease Day in the past has made you feel less alone or more empowered.

1. You Aren’t ↩︎