Working with a disability can be a frustrating and isolating experience. As someone who spent years blaming vitamin deficiencies, anxiety, and even Covid for worrisome symptoms before finally seeing a neurologist—and then a movement disorder specialist, I can attest that even the lengthy process of diagnosis can negatively affect your worklife and productivity. In 2020, when remote work became the norm for many, some of that burden was relieved. It was also a catalyst for a larger, much-delayed conversation—not just about working from home, but how we accommodate those with invisible or less obvious disabilities.

Many employers are aware of the widening skills gap as their top performers retire. The ability to maintain knowledgeable, competent employees should therefore be a priority. But what accommodations truly boost productivity for those working with serious, ongoing medical conditions?

While attending the Young Onset Parkinson’s Conference in Seattle in 2025, hosted by the American Parkinson’s Disease Association, I actively surveyed others for their views on working with an often hidden disability. I already knew mine: I'd been somewhat stunned when I first heard the words, “It looks like Parkinson's. We should rule out...” and a list of other disorders thrown out, not carelessly or casually, but in a calm and calculated manner. From there, tests and rule outs and medication trials interrupted my life and work for the next nine months. They still do. 

I was curious to meet people who were years into this, who had a firm diagnosis and perhaps a few years—even decades—of adjustment to a movement disorder. What challenges and solutions were notable in their professional lives?

Perhaps due to the sensitive nature of the topic, only two of the nine people who showed interest responded to my follow-up inquiry, and one asked to have her name changed completely. The first interviewee noted the recent federal backlash to DEI policies, which may have played a part in the overall hesitance to speak about working with a chronic condition. The second simply wished to keep some information private due to her role in the community.

With symptoms like tremors, bradykinesia (slowness), muscle cramps and spasms, stiffness, changes in handwriting, and mental fog, continuing to work while having Parkinson’s disease presents a unique challenge. And unlike an amputee or wheelchair user, the disability may be hard to spot, especially when someone with the disease is properly medicated. Aches and pains? Invisible. Internal tremors despite medication management? Invisible. A general delay in motor skills while using your computer mouse? Invisible. Hand cramps while writing a note? You get it. There’s a wide range of symptoms that greatly affect efficiency and make the person working with them more fatigued. 

Those with early onset can find themselves in a no man’s land at work, fighting a quiet, continual battle that comes with being in a body that sometimes seems totally disconnected from intentional movement. They might also feel out of sync with colleagues who don’t have to time their work around medical appointments or wonder whether their medication will continue to work consistently during a high-stakes presentation.

In my discussions, I looked for ways to protect work productivity for businesses and employees alike while also prioritizing the personal wellness of those who are employed with a chronic, invisible disability.

To protect privacy and be concise, portions of the interviews are cut and rearranged.

Interview with Nancy M, who works in healthcare

The topic of disclosing health information to your manager and co-workers is sensitive for a reason: Despite workplace protections, people remain fearful that they’ll be seen as less competent—or that their work will be further scrutinized for any signs of decline.

Megan W-K: What are some of the challenges of working with PD, and have you told your work about your diagnosis yet?

Nancy M: I had doctor’s appointments, so I had to basically ask permission to be gone and alert them ahead of time to find coverage. I work in a hospital, and I have a set schedule; there’s no work from home. I did choose to tell my boss the day after I got my news. I said I’m not ready to tell the team yet, and she respected that I needed to sit with it for a while and figure it out. I think it was probably weeks later, because I ended up having a skin biopsy to confirm my diagnosis. I needed to be gone, and I said, well, I’m going to get this biopsy and here’s why I’m doing it. And they were all just, you know, completely shocked—most people, myself included.

MWK: How did that go? Did they offer any accommodation?

NM: They didn’t know a lot about Parkinson’s or anything. I didn’t know, either. So once I shared it with them, I’m like, OK, I can put this out there. It took several more weeks so I could do it without crying, but I can talk about it freely now. Doesn’t make it any better, but with respect to accommodations, the one thing for me I think is extra time, though I’m very good at my job.

MWK: What issues do you see so far that are specifically related to Parkinson’s and working with it?

NM: I’ve been there a long time. I’ve got considerable seniority over most of these people. But I don’t have the opportunity to go take a nap at 2 o’clock in the afternoon like I would probably prefer. I’ve been up since 4 a.m. today.

(Note: Sleep issues are a very real, documented problem with Parkinson’s—both due to the symptoms and the brain disorder itself. Tremors, stiffness, and body aches further compound the issue.)

NM: I’m learning to cope with that. But I was in some significant pain during the night, and my tremor kicked in, and it’s like, well, that’s all she wrote. Because once that starts, I’m awake.

Nancy shared concerns about how much longer she’ll be able to work a full day, and how her memory functions. The skin biopsy she mentioned—the Syn-One test—finds abnormal proteins or alpha synucleinopathy, which is a common underlying root of many neurodegenerative diseases like Parkinson’s, Lewy body dementia, multiple systems atrophy, and pure utonomic failure. Cognitive impairment is a key feature for many in mid- to late stages of Parkinson’s. 

She also talked a bit about the struggle to maintain a busy life and schedule, and how there’s a general sense of having “many irons in the fire.” That can cause a lot of stress when the brain is literally changing. She apologized for talking too much and encouraged more questions.

MWK: No apologies needed. That’s a great introduction, because a lot of what you said sets the stage for the conversation. It’s, “This is your life, and now you have this added thing,” but on top of that, you do have your work life and professional life. And how do you manage that? Working onsite, what do you think is the biggest hurdle, and how do you get through it? You’ve mentioned finding time and managing cognitive issues. What else comes to mind?

NM: Fatigue, depending on the situation, is huge. I interact with anywhere from 25 to 50 people a day, or more, whether I’m checking them in as the patient or answering a question from someone in the department. And we get people coming in all the time asking for directions. I have to do all that on the fly. I also have to multitask quite frequently, but I always try to break things down into smaller pieces that help me manage things better. I’m a little scribbler. I’m a Post-it queen—there’s about four of them on the back of my laptop right now. I write notes down all the time.

MWK: It’s a good system.

NM: I’ve always done that, so it doesn’t seem too much of a crutch, I guess. But trying to keep all the balls up all the time, especially during work changes or system changes, is difficult. “Did someone else do that, or did I screw that up?” That’s always my first question. I have concerns about learning. It’s one thing to have brain fog and organizational difficulties with old information that you’ve already retained for years. But when you have to learn new things, it’s challenging.

MWK: So, you don’t have to answer if this is too personal. But how do you manage medication at work and making sure that you take that in a manner where it’s going to be effective? Just thinking—“OK, I have this really optimal time to work when medication is working.” Do you have any frustrations?

NM: So far, my biggest physical manifestations are that I have tremor in my right leg. And I don’t know that the medication is necessarily helping with that, or at least not for very long. I take it four times a day—and I’ve set my alarm. If I’m with someone at the moment, I’ll just hit the snooze until I have an opportunity to go and take my meds. They’re right there in my desk. I just do it in front of God and everybody; I don’t care.

MWK: Well, also, they shouldn’t care, either. It’s like, they don’t have to know what you’re taking, right?

NM: And you know, no one has a problem with it. Sometimes it comes up in conversation.

MWK: Have your colleagues and co-workers been pretty supportive?

NM: I will say yes, but they don’t get it.

MWK: There’s no way to, really, without having it or having similar overlapping symptoms.

NM: There’s no way, right. Because I even showed the “Parkinson’s iceberg” graphic to one of my co-workers. She’s very compassionate, but she just doesn’t have a clue. I said, “Do me a favor. Go Google this right now. While I’m standing here.” She did, and I said, “So you see the things at the top—you can see my tremors every once in a while. But look at the rest of that.  I could check off at least half of those at any given time.” And her eyes got big, and she’s like, “Oh my God!” I said, “Yeah, that’s my deal.”

An example of the “Parkinson’s iceberg” graphic, commonly used to convey the visible and invisible symptoms of the disease. Credit: Parkinson’s NSW

MWK: If you had to think about what you want to highlight, what’s important for employers to know about hiring and retaining people who are managing, we’ll just say Parkinson’s, but really it could be any chronic health condition.

NM: I’d say you need to acknowledge it. Find out from them directly what concerns they might have. It’s all about how much you’re willing to share, because some of it’s going to work better in some work environments and not in others. You know, to be a physician or an attorney or a chemist, you think about certain things. If I’m shaking, you don’t want me in your surgical suite. If I’m having trouble processing, then how am I going to appear in court? I’ve told them my situation [at work], and right now things are fine.

Nancy and I also talked about how some people take advantage of having a condition, and she’s seen how that affects the workplace. Having Parkinson’s has made her slightly less empathetic in those cases—she has to plan ahead and manage an unpredictable condition as well as she can for the sake of co-workers who may struggle finding someone to cover for her.

MWK: It can make personnel managers and recruiters wary of hiring someone with a disability.

NM: I’ve thought about, if I ever had to find another job, would I mark that disability thing or not? Because my fear would be, oh, they’d see that and go, well, you remember what happened with so-and-so, who we hired and who called out all the time? So that’s fair. And do you even know what the rules are now? I haven’t had a new job in so long. I don’t know whether the rules have changed with DEI.

MWK: How do you see your career changing, if at all?

NM: I can probably continue to do my job for as long as it works for me. I’m trying to figure that out, both from a can I do this job perspective and how I’m going to manage financially. I had planned to work until age 67, but all bets are off now.

Nancy and I discussed the possibilities of disability insurance and long-term care, planning for wills, and knowing it’s not as easy with no idea how things will play out with symptoms and progression. The effects were far reaching, from home and family life to the conversations about work.

What was striking in Nancy’s case was her readiness to address her disability with her colleagues and clearly communicate the difficulties she was having while not lowering her work standards or putting undue stress on co-workers.

In fact, she stated that she had less tolerance than ever for people with chronic illnesses who worked the system or called out repeatedly during shifts where coverage was difficult. This isn’t an unusual attitude in the Parkinson’s crowd: Competent individuals who were dealt a difficult hand aren’t thrilled with the excuses given. And in this case, while Nancy was open with her co-workers, she didn’t dance around how challenging some tasks have become.

Interview with Susan R., who works in a library

Susan, who is going by a pseudonym, had a different situation entirely. Having a naturally private nature, she isn’t ready to step into a public discussion of her own struggle. However, she noted significant support at home and work. Our conversation was much longer and more personal than the one Nancy M., but to keep on the topic of productivity and work, here are the excerpts. 

MWK: Let’s start with an introduction. How were you diagnosed? What things did you notice? And how did they start to affect you, personally and professionally?

Susan R: OK, purely out of the blue, I started noticing that I can’t balance on one leg as much as I used to. And then it was like I went into a dark space on a trip. I just suddenly felt really out of it. I went to my doctor, and she’s got an in with the neurologist at a hospital.

Susan’s balance issues were confirmed, and the neurologist noted something she hadn’t noticed: a distinctive lack of arm swing. The process of diagnosis was a long one. She went to three professionals before getting a DaTscan, which uses nuclear tracers to identify dopamine function and activity within the brain. For people with Parkinson’s, this scan has high rates of accuracy in catching a lack of symmetry in their dopamine patterns. For Susan, the results were fast and clear. She had Parkinson’s. 

MWK: You currently work in what capacity? Part-time, full-time, contract, hybrid remote office?

SR: I work in-person at a school library.

MWK: For you personally, what types of challenges are present when you’re managing Parkinson’s symptoms?

SR: The biggest one is balance, and obviously the little kids don’t know it. And I’ve only just recently started telling volunteers. But before they knew, it just felt like it looked like I was walking drunk. I felt like if somebody cut in front of me too fast, then I might feel unstable or like I’m going to fall.  There have been many times when I was like, “Oh, they’re going to think I’m on drugs or something.”

MWK: Speaking of drugs, how about medication? 

SR: I’ve just started Carbidopa/Levodopa. 

Susan’s condition has improved somewhat on medication, with her arm naturally swinging again—something that can actually increase your sense of balance as well as reduce the risk of frozen shoulder. But she keeps a cane handy in situations where her balance may be off.

However, stress can affect symptoms just as much as sleep deprivation. We discussed the pressures of managing the stress of her full life with teenagers at home as well as the stress of working with Parkinson’s.

SR: There’s just been so much going on; it feels like there’s one thing and then there’s another. It’s like I told my colleague, I’ll be better once I’m through this rough patch, and there was something else that came at me, and then something else that I was having trouble with. My kids are teenagers, so there’s never going to be a time when things [are calm]. It feels like I’m dealing with Parkinson’s and all these things going on as well, and the stress of that sometimes impacts things so much. But when I get enough sleep, I’m much better.

MWK: Do you feel your workplace is pretty supportive?

SR: Very much so. The head of human resources knew me already and was immediately like, “We’re there with you.”

Susan and I ended our conversation on the same note: It was good to talk to someone who knew what it was like to work with shared symptoms, someone who also knew what it was like to sail a boat through a storm. It’s not like taking sailing classes with people who regularly enjoy moderate winds and sunny skies—along with a personal guide.

Of course, storms exist for everyone. A workplace that acknowledges that fact not only keeps those with regular health issues employed, but those who will come up against other difficulties in life. 

The takeaway from conversations on disability and work

What I found was that remote vs. onsite work didn’t matter as much as the general work environment. Both women spoke freely about the adjustments, challenges, and expectations of working while managing symptoms, and how much of that requires not just extra work from the employee with a condition, but also a reliable and supportive work environment. Being able to take time off for medical appointments, to take breaks at work, to use aids if necessary for balance or memory issues, all contributed to high success at work.

Workplace dynamics also factored in. Nancy gave an example of a former co-worker with a disability, who called out frequently and at the last minute, which in turn made things more difficult for her—someone who also had a disability. That lack of reliability hurt everyone. Susan mentioned that she received an instant show of support from HR, and how she was now being open about her condition with volunteers to make sure people weren’t making assumptions about her or her abilities. This was an example of both recognizing and continuing to cultivate a supportive workplace with open communication. 

In the quality industry, the idea of kaizen—constant improvement, whether through small changes or new processes—should make workplaces more accessible as a rule. When processes are continually improving and implemented correctly, reliable and competent people want to stick around. Those with extra challenges who still have the skills are no exception.