Lupus & You Webinar Recap: Disability (SSDI) and Making Work Work

Living with lupus can affect many parts of your life, including your ability to work. Symptoms such as fatigue, pain, brain fog and other health challenges may make it difficult to maintain the same schedule, responsibilities or work environment over time. Understanding your options can help you make informed decisions about what may work best for you.

During our latest Lupus & You: Disability & Making Work Work webinar, attendees learned about workplace accommodations, the Family and Medical Leave Act (FMLA) and Social Security Disability Insurance (SSDI). The program featured Torrey Davis, MSIOP, Owner of Davis IOP Consulting, LLC, and Laura Beilke, Esq., Staff Attorney with Triage Cancer. Lupus warriors Theresa Costello, Monique Davis, Jade Harkness and Jasmine Lewis also shared their personal experiences navigating lupus, work, accommodations and disability.

Navigating workplace accommodations, FMLA and disability can be complicated, and individual circumstances and legal protections can vary. The information shared in this webinar and recap is for educational purposes and is not legal advice.

Top Takeaways from the Webinar: 

• Workplace accommodations may help you continue working as your needs change. Reasonable accommodations can include changes to your workspace, schedule or the way you perform certain parts of your job. Examples may include working from home, adjusting your work hours or shift, taking additional breaks, changing lighting or using assistive equipment or technology. The right accommodation depends on your individual needs and the essential responsibilities of your job. 
• FMLA and workplace accommodations are different tools. For eligible employees, FMLA provides unpaid, job-protected leave for qualifying medical and family reasons. Leave may be taken for a continuous period or intermittently when medically necessary. Workplace accommodations may instead change how, when or where you work so you can continue performing your job. Depending on your situation, you may use one or both. 
• Documentation is important when applying for SSDI. An SSDI decision is not based on having a lupus diagnosis alone. Social Security considers how your medical condition affects your ability to work. Medical records that document your symptoms, treatment, side effects and the combined impact of your health conditions can help provide a fuller picture of how your health affects your daily functioning and ability to work. 
• Changing your work situation does not take away from what you have accomplished. Lupus may change what work looks like for you over time. Continuing to work with accommodations, changing your role or schedule, stepping away from the workforce or finding a new direction are all ways of adapting to your health and circumstances. A change in your path does not erase your education, experience, talents or worth.

Our Health Education Specialists also collected answers to some of the most asked questions from the event:

What types of workplace accommodations may be available to someone living with lupus?

There is no single list of accommodations that is right for everyone with lupus. A reasonable accommodation is a change that helps an eligible employee perform their job, return to work or, in some circumstances, take time away from work.

Depending on your symptoms and job responsibilities, accommodations might include a modified schedule or shift, additional breaks, working from home, changes to lighting, an adjusted workspace or equipment, or assistive technology. An accommodation must be reasonable for the job and effective in addressing the limitation you are experiencing.

Your needs may also change over time. You are not necessarily limited to one accommodation and may need to request a change or additional accommodation if your health or job needs change.

"You are not limited to one accommodation," Beilke said. "Maybe you need one accommodation for one side effect or symptom but may need additional accommodations for other side effects. Plus, your needs may change over time, and you may need to modify your accommodation requests or ask for different accommodations if needed."

When should I ask for a workplace accommodation, and how do I start the conversation?

You do not have to wait until your symptoms are significantly affecting your job performance to ask about an accommodation. If you recognize that a change could help you perform your job, consider learning about your employer's accommodation process and starting the conversation.

You also do not have to use specific legal language such as “ADA” or “reasonable accommodation” to make a request. You can explain that you need a change at work because of a health-related limitation. Some employers have a formal process for requesting accommodations, so reviewing your employer's policies or contacting the appropriate HR representative can help you understand the next steps.

"A lot of times we want to say, 'it's my personal business,'" Harkness said, "but how is your HR representative going to help you to the maximum capacity to ensure that you're getting what you need if you are not transparent enough to tell them the whole story? Because if they know the whole story, then they can advocate for you."

Do I have to tell my employer that I have lupus to receive an accommodation?

Requesting an accommodation may require sharing some medical information, but that does not necessarily mean everyone you work with needs to know your diagnosis or medical history. Information about an accommodation may need to be shared with a supervisor so it can be implemented, but additional medical information should not simply be shared with others in the workplace.

Because workplace protections and accommodation processes can vary based on your employer and applicable laws, it can be helpful to understand both federal protections and any protections available in your state.

"As an employer and an employee," Davis said, "it is important that you have the conversation with your management to understand what are the expectations for you while you're on an approved plan and document that."

What is FMLA, and who is eligible?

The Family and Medical Leave Act, or FMLA, provides eligible employees with up to 12 weeks of unpaid, job-protected leave for certain medical and family reasons.

Eligibility depends on several factors. Generally, an employee must have worked for their current employer for at least 12 months, worked at least 1,250 hours during the previous 12 months, and work for a covered employer with at least 50 employees within a 75-mile radius.

If you do not qualify for FMLA, that does not necessarily mean there are no other options available. Workplace accommodations, employer leave policies, state laws or other benefits may provide different forms of support depending on your situation.

What is intermittent FMLA, and can it be used when lupus symptoms or flares are unpredictable?

Intermittent FMLA allows eligible employees to take approved FMLA leave in smaller increments rather than taking all of their leave at once. For someone living with lupus, that could be helpful when a qualifying medical condition requires occasional time away from work rather than one continuous leave period.

The need and expected frequency of intermittent leave should be reflected in the medical certification provided to the employer. Keeping that information current is important because leave taken for reasons outside what has been certified may not be protected as FMLA leave.

What information should my health care provider include when completing FMLA paperwork?

Medical certification should provide enough information for the employer to understand the need for qualifying leave, including how frequently or for how long leave may be needed. This can be especially important when symptoms fluctuate or you need intermittent leave.

Be open with your health care provider about how your condition affects your ability to work so the certification accurately reflects your needs. If those needs change, your documentation may need to be updated.

How do I know when it may be time to consider SSDI?

There is no single point when someone with lupus “should” stop working or apply for disability. Some people are able to continue working with accommodations or leave, while others may reach a point when their health prevents them from sustaining employment.

Social Security uses a specific definition of disability for SSDI. The medical condition must have lasted or be expected to last at least one year or result in death and prevent someone from doing their previous work or adjusting to other work. This is different from simply having a diagnosis of lupus or meeting the definition of disability used for workplace accommodations.

The patient panel also emphasized listening to your body and recognizing that changing your work situation does not erase your education, experience, talents or accomplishments.

"Changing your plan doesn't ever mean you failed," Costello said. "Sometimes it means that you're finally listening to yourself and you're finally succeeding with your intended destination, and that's just great.

What documentation is important when applying for SSDI?

Medical records are an important part of an SSDI application because they help show how your health affects your ability to function and work. Include information about the full impact of your health conditions, including symptoms and treatment side effects, rather than focusing only on the lupus diagnosis itself.

If you receive care from multiple health care professionals for different symptoms or complications, records from those providers may also help show the overall impact of your health. Even symptoms that may seem minor on their own can be important when considered together.

This was also an important message from the patient panel. Monique encouraged attendees to keep records, communicate openly about what they are experiencing during medical appointments and make sure their health care team understands how their symptoms affect them.

Can I work while applying for SSDI?

Possibly, but working while applying can affect how Social Security evaluates your claim. One of the first steps in the SSDI evaluation process considers whether someone is working and earning above Social Security's substantial gainful activity (SGA) limit. That amount changes over time.

Even when earnings fall below the SGA limit, Social Security also considers whether you can perform work you have done previously or adjust to other work. This means the relationship between working and an SSDI application can be more complicated than simply staying below a certain earnings amount.

For current income limits and information about how work may affect an SSDI application or benefits, check directly with the Social Security Administration.

What happens if my SSDI application is denied?

An initial denial does not necessarily end the process. SSDI applicants have the right to appeal a denial. The first level of appeal is typically a request for reconsideration, and there are deadlines for requesting an appeal.

Review the reason for the denial carefully and pay attention to the deadline included with your decision. Additional medical documentation or other information may be important as the appeal moves forward.

Do I need an attorney to apply for or appeal SSDI?

An attorney is not required to apply for SSDI or to appeal a denial. However, some people may choose to seek legal assistance, particularly as they move further into the appeals process. Legal assistance may be especially helpful if an appeal reaches a hearing before an administrative law judge.

Whether to seek legal assistance is an individual decision. If you are considering it, look for a qualified professional who has experience with Social Security disability matters.

Are SSI and SSDI the same thing?

No. Supplemental Security Income (SSI) and Social Security Disability Insurance (SSDI) are separate federal programs administered by the Social Security Administration. Both use a high standard of disability, but the programs have different financial and eligibility requirements. The webinar focused primarily on SSDI.

SSDI eligibility is tied in part to your work history and contributions to Social Security through taxes, and the amount of an SSDI benefit is based on previous earnings. If you are unsure which program may apply to you, the Social Security Administration can provide current eligibility and benefit information.

How do you move forward when your work situation changes?

There is no single path that everyone with lupus needs to follow. For some people, accommodations or FMLA may make it possible to continue working. Others may need to change jobs, reduce their responsibilities, leave the workforce or apply for disability. Your needs may also change throughout your lupus journey.

The lupus warriors emphasized the importance of adapting to those changes without losing sight of your value or what you have accomplished. Theresa reminded attendees that changing direction does not erase your education, experience, talents or worth, sharing that “changing your plan doesn’t ever mean you failed.”

Jade encouraged attendees not to compare their journey to someone else’s, since what works for one person may look very different from what works for another. Jasmine also encouraged finding comfort in change and adjustment and recognizing that a change in work may create opportunities to explore new interests, goals or ways of finding purpose.

Understanding your options, asking questions and finding the right support can help you make decisions that reflect your health, your needs and what matters most to you.

""[It's important to remember that] you're not quitting, you're adapting," Costello said. "We're always adapting. That's a tremendous difference. If your body can no longer sustain the career you once had, that does not erase everything that you accomplished."

Find More Information and Support

Check out our additional information on workplace accommodations and Social Security Disability Insurance (SSDI) to learn more about your options and resources that may be available to you.

Our Health Education Specialists are also available to provide non-medical support and help connect you with lupus information and other resources that may be helpful.

For additional information about workplace rights or disability claims, resources include the Job Accommodation Network (JAN) for workplace accommodation information, the Social Security Administration for current SSDI requirements and benefits, and Triage Health for educational resources related to employment, disability and navigating legal and financial issues related to a serious or chronic medical condition. State employment protections may also differ from or extend beyond federal protections. Find additional resources here  to learn more about navigating work and disability. 

Lupus & You is a free educational series where people with lupus and their family and friends can learn more about the latest in lupus research and managing the disease. You can find slides and additional resources from this Lupus & You here.

Our next Lupus & You will take place on October 14, 2026, focused on Embracing Skin Care. Find more information about upcoming and past Lupus & You events here. 

Authored by:

Ashley Holden, MEd, CHES

Ian Decker , Health and Communications Writer

This blog post and the lupus resources found on the National Resource Center on Lupus are, in part, supported by the Centers for Disease Control and Prevention under Cooperative Agreement Number NU58 DP006139. The contents are solely the responsibility of the developers. Points of view or opinions do not, therefore, necessarily represent official views of the Centers for Disease Control and Prevention or the Department of Health and Human Services.

The Lupus Foundation of America and our health education specialists have answered some of your most common questions. The provided answers are for educational and information purposes only. Consult with your doctor/health care team for medical advice.