Having a long and fulfilling career is something many of us strive for. But sometimes, life happens, and our employment trajectory can look different from what we anticipated.
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There are many reasons why this might happen, including if you develop health issues. With Huntington’s disease, over time, this genetic condition, which can affect your physical and mental health, can make holding down a job more difficult to manage.
Neurologist and movement disorders specialist Odinachi Oguh, MD, explains how Huntington’s disease might affect your career — and what people can do about work or job hunting if they’re diagnosed.
How Huntington’s disease affects your ability to work
Huntington’s disease symptoms vary from person to person in both type and severity. For example, you might develop a condition called chorea, which can cause involuntary muscle movements. You could also develop a mood disorder like anxiety or depression, or experience changes to your focus or memory.
However, you might only develop one category of these symptoms. “Huntington’s disease looks different in everybody,” Dr. Oguh says. “Not everybody will have movement-related symptoms. You can also have cognitive and behavioral symptoms. You may not see those as signs of Huntington’s disease because your movement isn’t affected.”
Because Huntington’s disease affects everyone differently, figuring out a work future isn’t a one-size-fits-all proposition. “There are many things we have to consider when determining, ‘Can I still hold down a job with Huntington’s disease?’” Dr. Oguh explains. “That entails recognizing if your disease is affecting your thinking processes or behavior, and the extent of changes to your movement.”
If your symptoms primarily affect the way you move, you can likely still work. “We do have medications that are able to control movements,” says Dr. Oguh. “I have patients who have mild chorea and are still able to maintain their job, with some adjustments to the job environment.”
But if you’re having difficulty completing your job duties, or are finding yourself making more mistakes or taking longer to complete tasks, that could be a sign that your behavior or thinking is being affected. This will make it more difficult for you to “maintain the same high-level capabilities of your job,” Dr. Oguh says.
Such changes aren’t out of the ordinary with Huntington’s disease, she adds. “As it progresses, the biggest thing that impacts quality of life, other than the movements, are the behavioral and the cognitive changes. You might become more dependent on family members or care partners to help with your day-to-day function.”
Continuing to work after a Huntington’s disease diagnosis
After you’ve been diagnosed with Huntington’s disease, there’s no set timeline for when you might need to leave your job. “Everybody’s different,” says Dr. Oguh. “We can’t say, ‘We expect you to work for another five years.’ Everybody has different disabilities and different abilities needed for their job. And we assess patients at different moments in time.”
Dr. Oguh does add that people who experience neurocognitive and behavioral changes tend to leave their jobs much earlier than those with just movement-related symptoms.
For example, she once treated a nurse living with Huntington’s disease. The nurse was able to work for a few years after being diagnosed, but had to leave her position after starting having difficulties with some physical tasks, such as placing IV lines. Dr. Oguh once saw another person who was more affected by cognitive and behavioral changes, and couldn’t pass the tests needed to become a practicing nurse.
“That’s an example of two different disabilities at two different moments in time,” she says. “One person was able to work longer, and the other one couldn’t even hold a job after six months after her diagnosis.” That led to a spiral of impulsive behaviors, another common symptom of Huntington’s disease.
Talking to your employer after a Huntington’s disease diagnosis
The truth is, you might not actually want to tell your employer you’ve been diagnosed. “That’s a question I ask people: ‘Do you want your employer to know?’” Dr. Oguh says. “It is a very personal decision for you whether you want to inform your employer or not.”
In general, Dr. Oguh says people who are diagnosed with Huntington’s tend not to tell their employers unless it’s absolutely necessary — like if your symptoms are affecting your job performance — and only if you agree you want to disclose your diagnosis. After all, an employer may discover something is going on with your health only if you have to fill out forms to take a leave of absence (often called FMLA) or go on short-term or long-term disability.
Still, it can be a tough decision deciding whether to talk about any health issues you’re experiencing, especially a serious diagnosis of Huntington’s disease. “Most people don’t think that they need to inform their employers because there are other repercussions,” she says. “This includes retaliation from the employer, especially if they don’t understand what’s going on. That can lead to lead to more issues.”
If you do need on-the-job accommodations, you can request these without revealing exactly what’s going on. Dr. Oguh once treated someone who worked as a pediatric physical therapist. After being diagnosed with Huntington’s disease, the woman wanted to keep working as long as she could, but had balance issues. The solution was doing her job alongside a physical therapy assistant, who could take some of the trickier duties off her plate.
“We wrote a letter to her employer that she has a neurological diagnosis and shouldn’t be lifting kids,” says Dr. Oguh. “She didn’t necessarily want to tell her employer, ‘I have Huntington’s,’ because she was afraid of some sort of retaliation. So, we just framed it as a neurological disease and put some restrictions or limitations to what she can do as a physical therapist.”
Looking for work with Huntington’s disease
If you’re job-hunting, the guidelines about telling potential employers about a Huntington’s disease diagnosis are more or less the same. You’ll likely only want to disclose this on a need-to-know basis. The secrecy is understandable: According to the U.S. Bureau of Labor Statistics, only 17.9% of people with a disability were employed in 2020.
Switching career tracks isn’t necessarily something people living with Huntington’s disease often decide to do either. “People often want to stay with what they know how to do, instead of learning an entirely new job,” Dr. Oguh says. “They might be worried about their cognitive and physical abilities to learn a new job, rather than continuing to do what they have been doing all their life.”
In fact, Dr. Oguh says people tend not to make this change unless they’re early in the disease’s progression or only have a positive predictive diagnosis (meaning a test that shows someone has the genetic mutation that causes Huntington’s).
Getting support with a Huntington’s diagnosis
If you’re diagnosed with Huntington’s disease, determining your work future depends first on assessing what kind of symptoms you’re experiencing. “Occupational therapists do an excellent job in determining, ‘What type of disability? What are the difficulties? Is there a recommendation that we can help you still maintain your job? If not, what’s the next steps?’” Dr. Oguh notes.
No matter what next steps you take, making sure you have a supportive team of healthcare professionals surrounding you is a crucial part of developing positive coping mechanisms.
“We help you find a psychologist and social worker that can support you,” says Dr. Oguh. “I can’t tell you how much I rely on those services to help people navigate the system in terms of what they need to do. That’s why we need the whole village to help the patients. I tell people, ‘You’re not alone. Ask for help.’”