The High Cost of Writing About Huntington’s Disease

Carlos Briceño avatar

by Carlos Briceño |

Share this article:

Share article via email
managing ADHD | Huntington's Disease News | travel | main graphic for column titled

I began this column about seven months after my wife, Jill, discovered she was gene-positive for Huntington’s disease (HD) in 2018. Every week since then, Jill and I discuss what I should write about, and this week was no different.

As we brainstormed, Jill asked me a couple of simple questions: Do you think this column is helping anyone? Is it worth the price to keep writing it?

I asked her why she was asking. She told me that the cost of thinking, talking, and sharing about her private issues was starting to take a toll on her.

Recommended Reading
human cell model | Huntington's Disease News | illustration of cells in petri dish

Huntington’s Protein Clumps Form Distinct Structures in Nerve Cells

I’ve talked about how private Jill is with most things in her life, but she was open to committing to this column because she hoped it would help others who might not have the knowledge she has about taking care of a loved one with HD. Her father had the condition, and now her daughter has it, too. She hoped the column could be a voice for the voiceless. If people felt less alone and scared because they read this column, she said, it would be worth it.

When I started writing this column in early 2019, Jill and I had many topics we wanted to share. As time went on, Jill started to realize that being transparent was harder than she thought it would be.

But she persevered. She kept workshopping ideas with me. She encouraged me to write about subjects she wouldn’t usually share with strangers, such as her mental health, her physical health, and the decline of both.

Then, last week, she came to the realization that thinking about Huntington’s on a weekly basis has been therapeutic, but also has its downsides.

She’s forced to confront her fears of what’s to come, which is not a great feeling. She also worries that her fears are starting to define her and that talking about her decline in such detail makes it hard to stay strong and carry on.

At times, this column has been difficult for me, as well, because I’d like to just enjoy my time with Jill. However, I’m also reminded weekly of her issues and the fact that she will suffer from the ravages of HD and eventually die from it, unless a cure is found.

I didn’t — and don’t — have an answer for Jill’s questions. But we continue to hope that this column helps others with Huntington’s not to feel alone, and that is worth the emotional toll of sharing our lives with others.


Note: Huntington’s Disease News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Huntington’s Disease News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to Huntington’s disease.

Comments

Paul Murray avatar

Paul Murray

I understand completely your, and Jill's, position on sharing. Some time ago I started a blog called HD Lives because I wanted folks to know and understand that my son's life was so much more than his disease. I hoped that the blog would become a place where anyone who wanted could write about the life, or lives, of those who suffered or cared for someone with HD. Unfortunately, due to my own poor health, I was not able to keep up my end of the bargain. Bottom line: the articles you share are perfect examples for which HD Lives was created. I deeply appreciate your column and hope it will continue. However, as my own heart breaks every day for my son, I will completely understand should it end.

Reply
Carlos Briceño avatar

Carlos Briceño

Hello Paul,

Jill and I thank you for your words. Keep reading the column for a more in depth reply. Also, don't forget to help us make a viral moment with the 'Congress, Hear Our Plea! Pass the HD Parity!'. Click here to learn more.

Reply
KE avatar

KE

I just wanted to say a huge thanks to you and Jill for this column. I read it every week, and it gives me a sense of normalcy and helps me not to feel alone in this. My husband lost his mom to HD last year, and his twin brother has recently tested positive for the gene, so he has an extremely high likelihood of having it himself. He has decided not to get tested for now, as he doesn't want to be defined by his diagnosis, which I totally understand. Thanks again for sharing your lives with us - I know it must be hard at times.

"Do not be anxious about anything, but in every situation, by prayer and petition, with thanksgiving, present your requests to God. And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus." - Philippians 4:6,7

Reply
Carlos Briceño avatar

Carlos Briceño

Hi KE,

Jill and I thank you for your words. Keep reading the column for a more in depth reply. Also, don't forget to help us make a viral moment with the 'Congress, Hear Our Plea! Pass the HD Parity!'. Click here to learn more.

Reply
Marion Franke avatar

Marion Franke

Hallo Jill und Carlos,
Bitte macht weiter.
Letztes Jahr im Sommer hat mein Mann diese Diagnose erhalten.
Wir haben zusammen Zwillinge die jetzt 22 Jahre sind, beide sind nicht getestet.
Ich bin teilweise noch in Schockstarre weil ich Angst vor der Zukunft habe.
Diese Krankheit habe ich bis heute nicht akzeptiert, versuche mich aber damit zu arrangieren und für meine Familie stark zu sein. Wenn ich suche Berichte lese, fühle ich mich nicht allein. Es gibt hier keine Grenzen.
Für alle viel Gesundheit und für hoffen zusammen auf ein Wunder. Liebe Gruesse Marion

Reply
Carlos Briceño avatar

Carlos Briceño

Hi Marion,

Jill and I thank you for your words. Keep reading the column for a more in depth reply. Also, don't forget to help us make a viral moment with the 'Congress, Hear Our Plea! Pass the HD Parity!'. Click here to learn more.

Reply
Chris Stecker avatar

Chris Stecker

I have often commented on your columns. My grandmother had the disease, my dad had it, my sister, 6 years my senior, has been diagnosed with and tested positive for HD. I have not been tested, but have all the appropriate symptoms for the age of 52... I guess. My dad didn't talk about HD. I was to young to ask my grandmother. Now there is no one that knows about it. My sister says that the Huntington's specialist here in KC didn't realize jerking comes with the disease... okay.. and the only other specialist says "if you don't have the symptoms ALL the time, you don't have it yet." What kind of doctor is that???? What a lovely doctor that guy is; my sister was bawling by the time she left. We hear you and are learning from you, HOWEVER, if you don't feel like doing it anymore, please do what is best for you and yours!

Reply
Carlos Briceño avatar

Carlos Briceño

Hello Chris,

Jill and I thank you for your words. Keep reading the column for a more in depth reply. Also, don't forget to help us make a viral moment with the 'Congress, Hear Our Plea! Pass the HD Parity!'. Click here to learn more.

Reply
Carol Gregan avatar

Carol Gregan

Our daughter who is adopted was diagnosed with HD in Sept of 2020. This has been a very informative article for us
since no one in our family has HD. We do not have much history on the adopted family other than a member was
diagnosed with HD & past on. This is where I come to & fine articles & books to read for more information.
You have to do what is best for your family & mostly for Jill, I understand what she is saying.

Reply
Carlos Briceño avatar

Carlos Briceño

Hello Carol,

Jill and I thank you for your words. Keep reading the column for a more in depth reply. Also, don't forget to help us make a viral moment with the 'Congress, Hear Our Plea! Pass the HD Parity!'. Click here to learn more.

Reply
Ginny Andrews avatar

Ginny Andrews

Thank you from the bottom of my heart for all that you have shared with us. Your story has been honest and at times heartbreaking. I can understand your concern about continuing. Please do what is best for yourselves.

Reply
Carlos Briceño avatar

Carlos Briceño

Hello Ginny,

Jill and I thank you for your words. Keep reading the column for a more in depth reply. Also, don't forget to help us make a viral moment with the 'Congress, Hear Our Plea! Pass the HD Parity!'. Click here to learn more.

Reply
Meghan Donaldson avatar

Meghan Donaldson

Dear Jill and Carlos,
Thank you for sharing your lives with me and with everyone else who reads your column. My mother had Huntington's disease, and of the 7 children, 2 of my sisters have passed away from HD and one of my brothers is in the later stages. I can only imagine how difficult it must be for both of you to feel the pressure of writing something meaningful each week and the emotional strength that it takes to do so. Please know that I and other readers feel a connection with what you write about and your column creates a community and helps those of us in this community to be better informed and feel less alone. You should do what you think is best for both of you but know that in writing so honestly and candidly, you are not only making people more knowledgable about Huntington's disease and how it affects entire families, but you are providing hope, comfort and kinship to people with Huntington's disease who may not have a community of their own. I wish you both the best and thank you for sharing your lives with us. Sincerely, Meghan Donaldson, Chief Executive Officer, Hereditary Disease Foundation

Reply
Carlos Briceño avatar

Carlos Briceño

Hello Meghan,

Jill and I thank you for your words. Keep reading the column for a more in depth reply. Also, don't forget to help us make a viral moment with the 'Congress, Hear Our Plea! Pass the HD Parity!'. Click here to learn more.

Reply
Kay Renz avatar

Kay Renz

My daughter has been living with HD for at least 15 years now. I've been her caretaker, sharing this journey. She is presently in the 5th stage, so I write poetry to help me cope with our loss:

Ineffable
(for Chris and all who live with Huntington’s)

There is no reason
or understanding of consequence

No entreaties
to consider
another’s needs
No shift of focus

There is only my daughter
barreling her walker
through the house
to get what she wants
do what she wants

Like a gale wind
on its course toward tornado
no veering
or cajoling
away
from down pour
chaos
the screeching
torn up feelings
pain against
life in dishevel

Nothing changes
or distracts

No solution
only the right
to give oneself
Grace
for losing it
in the path of this disease.

Kay Renz

Reply
Carlos Briceño avatar

Carlos Briceño

Hello Kay,

Jill and I thank you for your words. Keep reading the column for a more in depth reply. Also, don't forget to help us make a viral moment with the 'Congress, Hear Our Plea! Pass the HD Parity!'. Click here to learn more.

Reply
AW avatar

AW

I really appreciate this column, like others, it helps to create a sense of "normalcy" around HD. My mom has HD and is a lot like Jill in that this is a slow to progress disease that has some jumps, bumps, and moments of "is this HD?". Please always choose to do whatever makes sense for you and your family. Mental health is critically important for both Jill and your family.

The wound is the place where the Light enters you. -Rumi

Reply
Carlos Briceño avatar

Carlos Briceño

Hi AW,

Jill and I thank you for your words. Keep reading the column for a more in depth reply. Also, don't forget to help us make a viral moment with the 'Congress, Hear Our Plea! Pass the HD Parity!'. Click here to learn more.

Reply
SB avatar

SB

Dear Carlos and Jill, Thank you so much for all the sharing you have already done on your journey with Huntingtons.
It is encouraging for all who read and are in similar situations to you. I have a sister with Huntingtons and a mother who has passed away from it. I have found your articles warm and uplifting. You remind me so much of my father who cared so deeply for my mum and is now passed as well. As others have said do what is best for you and Jill of course. I think Jill has been so brave to help in the articles for so long. Love to you both.

Reply
Carlos Briceño avatar

Carlos Briceño

Hi SB,

Jill and I thank you for your words. Keep reading the column for a more in depth reply. Also, don't forget to help us make a viral moment with the 'Congress, Hear Our Plea! Pass the HD Parity!'. Click here to learn more.

Reply
B.J. Viau avatar

B.J. Viau

Great piece, Carlos. Thank you to you and Jill both for continuously sharing your journey!!

Reply
Carlos Briceño avatar

Carlos Briceño

Thank you, B.J.! We appreciate your encouragement. We are a big fan of your column and are thankful for all you do to advocate for those who are gene positive.

Reply
Marie J avatar

Marie J

I love your column. Your are making such a positive impact on the HD community. Thank you both for sharing your life with us <3. Greeting from France!

Reply
Carlos Briceño avatar

Carlos Briceño

Bonjour, Marie! Merci!

Reply

Leave a comment

Fill in the required fields to post. Your email address will not be published.