Working with Chronic Illness | YMyHealth

Do you have a colleague at work who is living with a chronic illness?

You likely know at least one person who is. You just might not be able to visibly see it. Also, the face of what chronic illness is supposed to ‘look like’ by some definitions has changed. Conditions that we thought were for people starting in their 50s and 60s have come to affect the daily lives of people in their 20s, 30s, and 40s.

When the oldest millennial turned 40 in 2021, a Harris Poll was conducted looking at millennials’ health. What they found was mindboggling.

About 44% of older millennials—those born between 1981 and 1988 (ages 33-40 at that time)—had been diagnosed with at least one chronic health condition. The numbers have only increased.

Knowing how many of our fellow millennials in today’s workforce simultaneously manage a chronic condition with a demanding career, we wanted to shed light on the challenges faced and provide useful information that can make a difference in the quality of your life and work life.

Along the way, we share insights from two YMyHealth Contributors, who are both active POTS (Postural Orthostatic Tachycardia Syndrome) advocates and patients: Summer Dashe, former television news anchor turned Department of Energy Communications Specialist and Journalism Professor; and Sarah Diekman, MD, JD, MS, MPH, a POTS and Dysautonomia expert who treats patients in her practice Diekman Dysautonomia, LLC.

Understanding your condition and its impact on work

When you live with a chronic condition, you must recognize its symptoms, the triggers of those symptoms, and what your day-to-day limitations are. In some cases, when we adhere to different treatments prescribed by our doctors, we can keep symptoms at bay. But unfortunately, that is not always the case.

Depending on the type of job or career path you have, there can come a point when you have to assess how your condition affects your job performance and how the demands of your job affect your health.

This is exactly what Dashe had to do. She had her dream job as a television news anchor but the job’s demands—early and long hours, limited time for doctor’s appointments and to eat healthy, and unpredictability of how she would feel and where she would be when her symptoms were triggered—were far from a dream when it came to managing POTS.

When she knew that she was going to have to leave TV news, she was worried that it would be devastating to other patients living with POTS who followed her online and saw on-camera how she was “still rocking the news thing.”

“I was really conscious of how my announcement was going to come across to all of those people. I knew I Wanted to be very clear and be brutally honest because I also felt like this was a moment where I could show the world or whoever saw me that these conditions are very severe. They are very debilitating,” Dashe said. "I wanted to balance the truth of it and the harsh reality of it with still letting patients know that there's still hope after this.”

Adding, “I needed people to know that the reason I was leaving news was because the symptoms of my POTS and Ehlers-Danlos Syndrome had gotten so bad that I could not succeed in that environment anymore. I needed people to know that because then those who question us and don't believe or understand us, including the doctors who don’t realize how debilitating this can be, they needed my example.”

As difficult as leaving television news was for Dashe, it has led to a fulfilling career in communications, teaching journalism, and POTS advocacy work, with more flexibility to manage her ever-changing and very challenging symptoms.

Summer Dashe is a former TV Journalist and news anchor, who for the past few years has brought her incredible writing and reporting skills to advance communications in the United States Department of Energy Office of Environmental Management, including launching a monthly newscast for them called Energycast. She also anchors a monthly medical news show for WATE, in Knoxville and teaches journalism at the University of Tennessee.

Summer has used her platform to be a tremendous patient advocate for POTS and Ehlers-Danlos Syndrome, bringing much-needed awareness and understanding to both conditions.

Knowing your rights

As important as it is for people under the age of 50—who make up the majority of the current American workforce—to understand a chronic condition and its impact on work, it is equally important to be armed with the information you need to make work, work for you.

“I encourage everyone with POTS or any chronic illness or disability to go to the government website, Ask JAN. That has a lot of environmental modifications. It can also give you ideas for accommodation requests,” said Diekman, who has POTS and treats patients with multiple forms of dysautonomia.

JAN stands for Job Accommodation Network. It’s the leading source for guidance for on-the-job accommodations and disability employment issues.

The network provides individuals with health conditions and disabilities individualized consultations and resources about ADA-protected job accommodation solutions.

Five disability laws and workplace protections from the U.S. Department of Labor to familiarize yourself with are:

Americans with Disabilities Act (ADA) - prohibits discrimination of people with disabilities and guarantees equal opportunities for individuals with disabilities in employment, transportation, state and local government services, public accommodations, and telecommunications. Two sections apply to employment: Title I and Title II.
Disability is defined by the ADA as a person who has one of the following:

A physical or mental impairment that substantially limits one more major life activities
A history of an impairment (such as cancer)
Is regarded by others as having an impairment (for example, a person who has scarring from severe burns, but it doesn’t limit a major life activity).

When you meet this criterion, your civil rights are generally protected by the law.

Rehabilitation Act (Sections 501, 503, and 504) –prohibits discrimination of people with disabilities by federal agencies, employers/businesses contracting with federal agencies and programs receiving federal financial assistance.
Workforce Innovation and Opportunity Act - includes protections for adult education and literacy programs and Vocational Rehabilitation programs for individuals with disabilities. Section 188 prohibits discrimination against individuals with disabilities by any program or organization receiving federal financial assistance.
Vietnam Era Veterans’ Readjustment Assistance Act- requires employers that have federal contracts or subcontracts entered into before December 1, 2003 of $25,000 or more and/or federal contracts or subcontracts entered into on or after December 1, 2003 of $100,000 or more to provide equal employment opportunities for certain veterans with disabilities.
Civil Service Reform Act – prohibits discrimination against applicants and employees with disabilities in most federal agencies.

Sarah Diekman, MD, JD, MS, MPH, is a Postural Orthostatic Tachycardia Syndrome (POTS) and Dysautonomia expert who is board-certified Preventive Medicine physician. She uses her training as a physician and experience as a POTS patient to treat fellow dysautonomia patients in her private practice, Diekman Dysautonomia LLC.

Reasonable Accommodations

What are considered reasonable accommodations to ask for?

A reasonable accommodation is “any change to the application or hiring process, to the job, to the way the job is done, or the work environment that allows a person with a disability who is qualified for the job to perform the essential functions of that job and enjoy equal employment opportunities.”

Examples are:

Alternative communication formats (example: written versus verbal feedback)
Adjusting equipment (example: software that magnifies the computer for an employee who has low vision)
A flexible work schedule
Accessible parking: (a reserved spot closer to the building)
Service animals

“Accommodations matter,” Diekman said emphatically. “It is really important because the thing about dysautonomia is the less flares you have, the less you are triggering that sympathetic response.”

For her, standing or sitting for too long can trigger symptoms, so, she has found the best combination is to work while sitting or lying down.

“I try to balance my work tasks with these environmental modifications for myself and those things work to give you less flares.”

Communicating with employers

The decision about when and how to disclose your condition to your employer is not an easy one.

As a fellow millennial in the midst of building a career that she loved, Dashe knew she had to go about it in a way in which she clearly explained her needs and limitations—something that any young person with any chronic illness should do.

To put this further into perspective, Dashe worked Monday to Friday from around 2 pm until midnight (she was an evening anchor then). Yet, she managed to go to 12 different doctors over two years as she sought a proper diagnosis for her severe symptoms.

Towards the latter half of that, she had a conversation with her employer about needing time to go to the appointments, one time-consuming one. Her mom wanted to take her to see a specialist at the Mayo Clinic.

“I just was scared that if I left that someone else would get the job, and I'd be pushed out. These are things you hear about in the news industry, and so, you just get worried about it. Looking back, they wouldn't have done that. My station was wonderful, and my boss was wonderful,” Dashe recalled.

Talking with her employer to take the time for that appointment changed her life, as that 12th doctor at Mayo Clinic finally properly diagnosed her with POTS, and she was able to start treatments.

Here are some resources to help get your own conversation started with your employer:

Navigating healthcare while working

Managing your healthcare just to get your preventive care in can be challenging with work hours. But when you are having debilitating symptoms that you are trying to get to the bottom of, scheduling multiple doctors’ appointments can be even harder.

“When am I going to go to a doctor's appointment when I am a Monday through Friday anchor? There's no time. Doctors aren't open on the weekends, other than urgent care," Dashe reflected.

The reality is the only way to get proper care, especially with specialists, is during standard work hours (typically when you have to go to appointments). That’s where communicating clearly with your manager and those in human resources is what you have to do for the sake of your health.

Dealing with workplace stress and demands

That being said, it is incredibly important to recognize when work is exacerbating your condition and take action.

From her clinical perspective, Diekman finds that for POTS and other chronic illnesses is about learning to manage your symptoms amid stress is about earning trust with the brain.

“In POTS, when the brain understands that you will respond to the symptoms like laying down when you don’t feel well or setting boundaries, it can make or break not getting a flare. It’s almost like you can pay a little bit now or a lot later,” Diekman said. “When I am able to fully maximize my environment and not ignore my symptom, the less I get flared, the more I can do, and the more I’ve had control over my own schedule.”

According to the Cleveland Clinic, strategies for managing stress and workload include:

Focus on single-tasking instead of multitasking. Multiple tasks simultaneously make it harder to focus and more likely to make mistakes.
Set boundaries about how often you check and answer an email
Keep your emails short and sweet (an average of seven sentences, depending on the type of information)
Clean and organize your workspace if clutter is bothering you
Take breaks for your body and mind

For your health overall and even more so when you have a chronic illness, it is also critical to evaluate when a job is no longer sustainable with your health.

Explore alternative career paths where you can still use the skills and experience you have, but in a different way. This is exactly what Dashe did.

"I found another career, and I just had to adjust. Is it devastating? Yeah, absolutely."

However, she still uses her incredible writing, reporting, and editing skills everyday. It’s just in a different way with a different audience, and importantly with the flexibility she needed.

Building a support network

It is also important to connect with colleagues at your company who are understanding and compassionate about the balancing act that you have to do with work and managing your chronic condition.

Joining support groups or online communities that center around your industry and your condition is another great resource. It keeps you up to date on the challenges people are facing and proposed solutions. This was something that Dashe found helpful.

"There were some private Facebook groups for journalists, where we would have quality of life discussions and coverage discussions, a place for all of us to chat about the industry," Dashe recalled.

Advocating for workplace wellness programs

From a big-picture perspective, you can use your personal experience with navigating chronic illness to improve the health and quality of life of others around you.

One way to do this is by suggesting employee-wide initiatives that benefit everyone. This can include everything from breaks to participating in wellness activities to having healthier food options at office gatherings.

By doing this, you can promote a culture of both health and understanding—one that most people in our generation, chronic illness or not, truly want.

Conclusion

Managing chronic illness in the midst of being in one of the most active and busy seasons of your life—20s, 30s, and 40s,—can often feel like an uphill battle. That’s because it is. But as much as we can’t control, there are things within our power, beginning with self-advocacy

Remember, much like chronic illness management itself is not a sprint but rather a marathon, the nature of your self-advocacy in the workplace is ongoing.

Keep going. You and your talents, no matter what career path you are on, deserve to have a place at the table while being able to sustain your health too.

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Navigating the 9-to-5 with Chronic Illness: A Guide to Workplace Self-Advocacy