Huntington’s disease reshaped our understanding of disability benefits
It's important to understand that disability benefits aren't a moral failing
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Disability benefits is one of those topics that my wife, Jill, and I never thought much about until Huntington’s disease forced it into the center of our lives.
Before Jill was diagnosed as gene-positive in 2018, I vaguely pictured disability as something that happened to other people, a label that meant you were confined to your bed and unable to walk or think by yourself.
Now I see it very differently. And I see disability benefits as a kind of insurance you pay into, a safety net you help build long before you ever need it.
If you have worked and paid into Social Security or a private disability plan, you have been funding that safety net with every paycheck. That money is not a tip jar or a donation. It is part of your compensation, set aside in case illness or injury makes it impossible for you to keep working.
When Jill and I look at those deductions now, we do not see charity. We see receipts.
So when someone becomes disabled and applies for benefits, they are not “living off the system” as some kind of charity case. They are using something they already paid for, the same way you would use health insurance after a surgery or auto insurance after an accident.
You wouldn’t apologize for filing a claim after your car was totaled. So you shouldn’t apologize for accessing disability benefits when your body or brain can no longer do what your job requires.
You are not a burden
Jill struggled with this concept at first. She worried people would think she was taking advantage of the system, or that she did not “look sick enough.”
Huntington’s is sneaky that way. There are days when she can smile, talk, and even joke, and strangers might assume she is fine. They don’t see the exhaustion afterward, the cognitive fog, or the quiet grief of watching skills slip away. For a long time, she felt she needed to prove she was disabled enough to deserve help.
We had many conversations about that. I reminded her that the point of disability benefits is to bridge the gap between what a person used to be able to do and what their body allows them to do now. The system is far from perfect, and people often face delays and denials. But at its core, it exists because society recognizes that work is not always possible, even for people who desperately want to keep going.
Jill often says she wishes more people understood that disability benefits aren’t a moral failing. They respond to a change in circumstance. The person who applies for benefits is the same person who showed up early for work, stayed late, and paid taxes for years. The only difference is that now their body or mind has held up a stop sign they cannot ignore.
If you are in that position, please hear this: You are not taking something you did not earn. You are not a burden needing support. You helped build that support with every paycheck. You are entitled to access it when you need it.
That’s one of the reasons why we encouraged the passage of the Huntington’s Disease Parity Act, which would have waived the current two-year waiting period for Medicare coverage and Social Security Disability Insurance for those with Huntington’s who qualify for federal disability.
Jill still has moments when shame creeps in. Old messages about “working hard, no matter what” run deep. On those days, we go back to the basics. We look at the paperwork that shows how much she contributed over the years. We talk about the people she helped, the hours she put in, the ways she showed up for her co-workers over the years when she held jobs. None of that vanishes because she now lives with Huntington’s disease.
So we hope those who are contemplating disability benefits or those who are on it aren’t embarrassed by it. Being disabled does not erase your worth. Drawing on benefits you paid into does not make you greedy or weak. It makes you human, living through something hard, using the tools that were created for exactly this situation.
Jill reminds me of that whenever doubt starts to whisper in our house. “If this were anyone else,” she says, “I would tell them they deserve help.”
She is right. And so do you.
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.
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