What Huntington’s disease families can take away from the Lindsay Clancy trial
An illness does not affect only the person who receives the diagnosis
Written by |
For families affected by Huntington’s disease, some courtroom trials — especially those involving a defendant’s deteriorating mental health — are impossible to watch without feeling the weight of the tragedy at their center. The recent Lindsay Clancy trial is one example.
Clancy was a nurse from Massachusetts whose lawyers don’t deny that she killed her three young children before attempting to take her own life in 2023. Her defense team said she had postpartum psychosis, sought mental health treatment, and was misdiagnosed and inadequately treated. Her lawyer argued that she was not criminally responsible by reason of insanity.
I am not commenting on anyone’s guilt or innocence. That was for the legal system to decide. (Eventually, a mistrial was declared.)
But trials that raise questions about mental health can spotlight something Huntington’s families understand all too well: An illness, and its effects on mental health, does not affect only the person who receives the diagnosis. It also affects everyone who loves them.
No one should carry illness alone
In 2018, when my wife, Jill, was diagnosed with Huntington’s disease, it was her diagnosis. It meant that her body, brain, and future would be severely affected. But her gene-positive status was never hers alone to carry.
A Huntington’s diagnosis enters a family’s life both immediately and gradually. First come the questions: What does this mean? What changes can we expect? What should we prepare for? Who do we tell? What happens to our plans?
Then come changes so gradual that they can be easy to miss.
A person may have trouble concentrating or organizing thoughts. They may become forgetful or have difficulty making decisions that once came easily. Depression, anxiety, irritability, apathy, anger, impulsivity, and changes in judgment can be part of the disease. As Huntington’s progresses, movement, balance, speech, swallowing, and independence can change, too.
Those symptoms do not define a person. They do not erase love, history, humor, values, or humanity. Nor do they make people with Huntington’s disease dangerous. But they can change a family.
They can change how spouses communicate, and who manages finances, appointments, medications, household responsibilities, and difficult decisions. They can require everyone to adjust expectations. They can turn someone who thought of themselves only as a partner, child, or friend into a caregiver.
Jill understands this better than most people. She knows her Huntington’s diagnosis affects more than her. It affects me, our family, and readers who recognize parts of their own lives in ours.
That awareness can hurt. No one wants to feel that their illness has become a burden for the people they love. But it can also remind us that no one should carry illness alone.
Jill and I have talked about other courtroom trials we have watched over the years. What stays with her is how quickly people want a simple answer. They want to decide who is right or wrong, good or bad. They want a short explanation for something that may have taken years to unfold.
Meanwhile, Huntington’s families understand the complexities of illness. They notice when a loved one is struggling to sleep, becoming withdrawn, forgetting things, reacting out of character, or feeling overwhelmed by tasks that once felt manageable. They may see fear, confusion, exhaustion, frustration, or despair long before others understand what is happening.
That doesn’t mean family members always know what to do. Often, they do not. They may feel uncertain, isolated, or afraid of saying the wrong thing. They may worry they are overreacting. They may not know where to find care, what help is needed, or how to persuade a loved one to accept help.
For Huntington’s families, these questions can become part of daily life. Huntington’s affects movement, thinking, mood, and behavior because it affects the brain. It is progressive, meaning needs can change over time.
The tragedy surrounding the Clancy trial cannot be undone. Nothing can make it less heartbreaking for the people whose lives were shattered. Jill and I hope it leads to a deeper understanding of mental health and the reality that illness has a ripple effect. We hope people learn that asking for help is not a failure, that families are taken seriously when they say they are worried, that caregivers receive support, and that mental healthcare is available when needed.
We also hope people stop assuming someone is fine simply because they say they are fine.
And we hope people affected by Huntington’s disease hear this: Your diagnosis may affect those around you, but you are not a burden. You are a person, and you deserve care, dignity, patience, and support.
The trial may leave many people feeling helpless. But compassion is not helplessness. It means paying attention, listening, believing families when they say something is wrong, and building a world where no one facing mental illness, Huntington’s disease, or caregiving has to face it alone.
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.
Leave a comment
Fill in the required fields to post. Your email address will not be published.