Why Do Children Suffer with Rare Disease, but Adults Just Live with It?

I remember when the local news reporters interviewed my parents as a child. They asked the caretakers many of the questions at the time. People want to hear the story of a father and mother in the small community that had the experience of giving birth to a child that was not what every parent prayed for: healthy.

I would get questions too. What did I do for fun? Who were my friends? What music was I into? Then the story would hit print and phrases like “impish grin hides a body suffering with incurable disease”or the positive cliche “you won’t find a child happier than Rebekah Palmer despite Cystinosis”.

And the reality? It was true. Most children living with rare disease don’t see themselves as sick and suffering. These are abstracts. We know children think and feel in concretes. When a group of second graders are asked, “Between a five dollar bill and 3 one dollar bills, which is more?”; they pick the 3 ones every time. Even when watching films in which the children on screen throw fits and act out, children will associate this with others, never themselves.

There are of course exceptions, even among children. These children will hear an adult
explain why it is wrong to hit another child even when they cut in front of the line to slide down the slide and realize, “hey I’ve done that, next time I won’t hit”. These children will hear the story about a child who lives in a home where the Mommy and Daddy fight all the time and feel a prick in the back of their mind because that’s what all the screaming last night meant. It’s my home.

Typically, our ability to relate and reflect honestly comes with maturity and that often comes with age, although not necessarily. As there are more sensitive children than others, there are more sensitive adults than others. Most adults living with rare disease have grown out of the “it’s those patients that are sick, not me” mindset. We know medical science because we’ve lived it and read other’s words, be it our own parents, friends, family, or media. Now we apply the concept of what does disease mean for my life, and the process varies patient to patient.

Adults know that we can’t take breaks in the morning, afternoon, and evening because we
aren’t paying our employer like our parents paid for our school teachers. Adults know that we can’t expect another adult to stay all day and all night for however long a hospital stay takes, plus take care of responsibilities at home: we have to respond or find others to help with the responsibility of responding.

Adults know that our parents or guardians aren’t going to talk to our friends about it; if anyone is going to know about our health, we are the ones who will be discussing it. Adults know that getting to a Cystinosis conference isn’t a matter of climbing in the backseat of the family van anymore; it’s our choice to be involved.

Healthy and Rare alike transition into this equal adult space of questioning where do I fit in
community. The Rare just experience more exacerbation in day to day dealings among the
human race. Everyone among the Rare also experiences life differently. One experience is not superior to another as we all make up the picture of what it is to be an adult living in a rare body.We know what suffering is now. We know what pain is. We see that movie with the child in the bed connected to I.V.’s and relate and decide how we express our experience. We read that article about the true story of those two Cystic Fibrosis people who married. It’s us. We feel it.

I don’t get many questions about life as an adult living with rare disease for the local paper
much now. I am post transplant 18 years and post cancer 17 years. I’m not the kid with the impish grin, squinting into the sunlight, and holding a baseball bat, playing little league right alongside my peers. I am a 30 year old woman (still with the impish grin), but with sunglasses on and holding onto my purpose, working at the mundane tasks in life right alongside my peers trying to figure out what my normal is as they are. The difference between the child suffering and the adult living? There’s no drumroll and cheers to point me out, yet in many ways I have more reason to be speaking about life with rare disease than ever. If I suffered as a child, I didn’t let it bother me. I could smile for the cameras and let everyone see that disease doesn’t define me while waving their banner of inspirational. I didn’t have any of the cares and responsibility that living longer on this earth brings. Thankfully for treatment, I am enjoying life longer and with that freedom, I now know the care and responsibility that comes with Cystinosis.

I saw it on the adults faces then. I am that adult face now. I don’t need recognition or a pat on the back for suffering with a rare disease. I need community for living with it.
The Orphan Drug Circus
by Rebekah S. Palmer

“Orphan illness! Orphan drugs!”
the lone ringmaster bellows
when no media run the advertisement
when no foundations champion the banner.

This world finds the idea of rare
an illusion, a distortion only suitable
for draining dollars from the participants
in government sponsored studies.

Maybe it’s the spectator pharmacies
worried only 500 people will need their pills.
Maybe it’s the CDC worried about grants
that only will help a single digit percentage in population.

This world finds the idea of rare
an enigma when it’s part of children and teens lives.
Go fund me and nonprofit organizations light up online.
Rare is amusing, profitable, entertaining

as social media laps up the unbelievable,
the impossible drama laden show.
When the child is in utero or an adult elderly
society hands a death sentence.

The zygotes and matured bodies of post pubescence
are not as relevant to community.
Let’s get loud, clear, real about orphan disease:
Guess what world?

Those enigma children and teens grow up
when treatments work.
Those elderly adults
share their stories and teach us longer.

When the Big Top folds up
and the clowns remove their masks
“Orphan illness! Orphan drugs!”
are freakishly inconvenient

by a world which finds special needs
a privilege to thank God,
not a God-given right.


To learn more about cystinosis, check out our partner the Cystinosis Research Network here.

Rebekah Palmer

Rebekah Palmer

Rebekah Palmer is the author of two books published by Aneko Press: A Letter to my Friend and A Letter to Myself. She also has poetry included in the anthology Strength: Lives Touched By Cystinosis. She is a rare disease news curator for her blog Cystinosis Society. Please visit her author profile on Goodreads and her author page on Facebook called Jairus Daughter to ask any questions or to reach out.

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