Navigating Accommodations: A Guide for Long COVID and Chronic Illness Patients

Accommodations can be as simple as a pair of noise-canceling headphones.

It's frustrating for disability advocates when they realize that many people don't ask for reasonable accommodations, even though the right is protected by law. In one study in Rhode Island, only 22% of workplaces studied had anyone request an accommodation for Long COVID. Many felt their symptoms weren't severe enough. The study also revealed that 42% lacked information on the process or didn't feel safe asking. There’s a noticeable gap in research regarding whether people with ME/CFS ask for accommodations.

The Importance of Speaking Up

Still, Long Haulers are speaking up more than others. Well done! A Deloitte 2024 US study shows that 75% of employees with disabilities and chronic conditions don’t request accommodations at all. Even those who do often face denial. So, why do Long COVID workers ask for help more frequently? It’s likely due to increased public awareness and federal ADA guidance in 2021—something many chronic illnesses never received.

From these numbers, we see that stigma and the struggle for support are very real. I was once in that position. I didn’t want to seem difficult, and I worried my manager would think I was asking for special treatment. That self-stigmatization changed when I became a student at Harvard Medical School in 2025. My doctors made it clear: my recovery from Long COVID depended on managing long hours in class, commuting, and strict deadlines. I needed to build in rest, and I could only do that with support. I quickly pushed through the paperwork, and we met the school deadline. My professors and the office of disability services were incredibly helpful, as were the many other disabled students in my cohort. (Surprise! We're everywhere!)

Overcoming Fears and Stigma

Avoidance often stems from very real fears. People worry that others will think they are incompetent. It’s true—managers who lack experience with disabled employees may not understand that you are talented and strong but still need help to do your best work. My best advice? Focus on discussing practical work-related needs. Talk about breaks, noise levels, flexible hours, seating, and IT help. Avoid medical jargon or complicated symptoms.

Do’s and Don’ts for Requesting Accommodations

Here are some quick do's and don'ts to guide you:

DO prepare before discussing your illness with a colleague or manager. A useful resource is the DOL, which has lots of good information. Unfortunately, they recently deleted Long COVID from their dropdown menu of disabilities. But you can still find the link in the WayBackMachine to the old AskJan site's Long COVID guidance, which remains relevant. You can access it here. This site provides insights into work scenarios, disability law, and offers resources to help you make a plan. Whether you’re new to a job or experiencing increased stress and illness, this site offers valuable pointers.

DO communicate with your manager about your desire to perform at your best. Keep it simple. You might say, “With Long COVID, rest prevents burnout. Taking short breaks helps me do better work and complete tasks on time.” To help with pacing, ask for two short, half-hour lunch breaks—one at 11 a.m. and another at 2 p.m. Explain any challenges you face with commuting in the summer heat. Suggest arriving early and leaving early to avoid peak traffic.

DON'T lean on coworkers to cover for you if you come in late or leave early. It’s not fair, and it won’t boost their confidence. Instead, set clear expectations: “I will be late tomorrow. I left all the files you might need on the shared drive. I am not feeling well. Period.”

DON'T exhaust yourself doomscrolling or browsing Facebook groups. Instead, use your energy to learn about your options. Why avoid Facebook groups? It’s too easy to get drawn into someone else's situation, and their solutions may not work for you. There can also be a lot of negativity. I recommend sticking to moderated peer support groups run by hospitals and nonprofit organizations. But that’s not a hard-and-fast rule.

Building a Supportive Network

Creating a supportive network is crucial. Connect with others who understand your journey. Sharing experiences can provide comfort and insight. Look for local support groups or online communities that focus on chronic illnesses. These spaces can be invaluable for sharing resources and strategies.

The Role of Healthcare Providers

Your healthcare provider plays a significant role in your journey. They can help you understand your rights and the accommodations available to you. Don’t hesitate to ask them for advice on how to approach your employer. They can provide documentation that may be necessary for your requests.

Embracing Your Journey

Remember, you are not alone in this journey. Many individuals face similar challenges. By advocating for yourself and seeking the accommodations you need, you are taking a significant step toward improving your quality of life. Embrace your journey, and don’t hesitate to reach out for support.

In conclusion, navigating the world of accommodations can be daunting. However, with the right resources and support, you can advocate for your needs effectively. Remember, your health and well-being come first! Together, we can foster understanding and create a more inclusive environment for everyone.

—Denise Brodey