Let’s Be Rare!
I am a patient
With rare diseases.
But, a rare disease doesn’t
Define who I am.
My character does.
My character is revealed by
My reaction to the hardships
Of life …
Will I break or stand?
Many people despair
When they face issues day
And night;
They choose to give up.
But those who have
Faith to rise above
Their circumstances
Are people of character.
They are rare gems – with a
Rare type of reaction
To the challenges in sight.
They respond
By standing
Taller
And growing
Stronger –
Not
By breaking,
Nor slowing
Down.
I have chosen to be rare.
No matter how debilitating
The illnesses are, I will not be
Stopped. I will not despair! I
Will press on. And I shall use
My life to advocate for
Others with rare diseases.
Anyone can be rare – people
Who have rare diseases,
As well as people who don’t,
But face
Other difficulties
In life.
Dear reader, if you have
A rare sickness, you can
Develop rare character and
Overcome the illness by
Choosing to not give up.
If you don’t have a rare
Disease, you can still be rare.
Develop rare character by
Choosing to press forward
Through any challenge
You face and not lose hope.
Whatever background you
Have, you can also choose to
Be rare by courageously
Advocating for folks who
Suffer from uncommon
Diseases.
For there are
Too few a
People who care
To stand up
For the hurting.
I’m glad that I’m rare;
You can be rare, too!
Let’s all be rare,
Spreading
LOVE EVERYWHERE!!!
Artist’s Statement
“Let’s Be Rare” explores the true meaning of being rare. As someone living with multiple rare diseases, including a rare seizure disorder and rare food intolerances, I understand the challenges of surviving and seeking proper treatment. Through this poem, I express that while I have rare diseases, they do not define my identity. Instead, I am defined by my character - the will to choose perseverance over defeat.
The poem encourages readers to recognize that anyone can be "rare" by developing strength, compassion, and resilience in the face of life's challenges. It also calls on others to advocate for rare disease patients, reminding us that true rarity is found not in illness, but in a heart that serves others with faith and purpose.
Because of my health, I could not look at a computer screen or type. So, I used voice-to-text and told my younger brother what to type for the final draft. Despite recent seizures, severe migraine attacks, pain, weakness, fatigue, brain fog, and breathing difficulties, I completed this work. I’m excited to see how this poem will encourage advocacy for patients with rare diseases and give hope to others who battle intense challenges in life.