I don’t have the gene but I’m still living with Huntington’s: A poem

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by Bionews Staff |

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Five photos showing people affected by Huntington's disease, who are sharing their real-life stories during Huntington's Disease Awareness Month, are hung with clips on a string above the words 'Community Spotlight.'

David McDonagh smiles in a photo. (Photos courtesy of David McDonagh)

This is David McDonagh’s story:

I don’t have “the gene,” but I’m still living with HD.

Let me explain and I hope that you’ll see.

I tested negative … and that’s just how I feel,

The counseling, the nightmares, it’s all so unreal.


It was in our family but we had no idea;

It came like a bombshell, bringing such fear.

I live it and breathe it, it’s a part of me —

Wherever I go, whatever I see.


McDonagh stands alongside a large sunflower.

HD in your family is as bad as it gets,

The worst kind of illness … You just can’t forget.

Your brothers, your sisters, your kids all the same,

Watching each other for signs. It’s just a shame.


Positive or negative, whatever’s revealed,

Your life’s changed forever, it cannot be healed.

“Why them? Why not me?” comes into my head,

I should have had it, not them, me instead!


Then I look at my wife, my children, my grandkids,

And I feel so guilty for feeling like this.

But I also feel guilty for not having the gene,

So now, I hope, you can see what I mean.


HD changes lives forever, it doesn’t go away,

The only thing to do is take it day by day.

You can fight it, ignore it, or simply hide away,

But with the help of those around, you can keep HD at bay.


It’s better to know than to live a life of fear,

It’s better to fight together, no matter how severe.

Don’t go it alone like some people do!

Let in the people who will be there with you.


The fact is, I am negative, but HD affects my crew.

It’s different for me, that’s undeniably true.

But no matter, I feel it. I hope you can see:

I don’t have “the gene” — but I do live with HD.


In recognition of Huntington’s Disease Awareness Month in May, the Huntington’s Disease Community Spotlight campaign features a series of stories highlighting the real-life experiences of people affected by Huntington’s, written in their own words. Follow us on Facebook and Instagram for more stories like this, using the hashtag #HDSpotlight, or read the full series.