Sometimes, Sjögren’s disease (previously known as Sjögren’s syndrome) can cause symptoms that make it difficult to do your job. When that happens, you may need to figure out how to file for disability or make changes to your job and work environment that will help.

If you’re in this situation, there are a few facts that can help you through the process. Here’s what you need to know about Sjögren’s disease, disability, and workplace accommodations.

Sjögren’s Disease and Social Security Disability Benefits

Sjögren’s disease is one type of autoimmune disorder. In autoimmune disorders, the immune system mistakenly attacks healthy tissues. Sjögren’s can affect your ability to work in several ways. If you have ongoing dry eyes because Sjögren’s affects the glands that make tears, you may struggle to do a job that involves looking at a computer all day. If you have mouth sores due to a dry mouth, it might make it too painful to talk sometimes, which can be hard if you’re a teacher or an educator.

Social Security has two disability programs. Social Security Disability Insurance (SSDI) is for people who worked and paid Social Security taxes. Supplemental Security Income (SSI) is for people with very low income and few resources. Some people qualify for both.

There are several ways to qualify for SSDI if you can’t work because of Sjögren’s disease. These can be a little complex to navigate. First, your condition must have lasted, or be expected to last, at least 12 months. In some cases, conditions that are expected to be life-threatening may also qualify. The Social Security Administration (SSA) decides this using medical records from your doctors.

You may qualify if Sjögren’s disease affects at least two organs or body systems. At least one of these must be moderately severe or worse. You must also have at least two of what the SSA calls the constitutional signs of an active autoimmune disease, which are unexplained weight loss, severe fatigue, malaise, or a fever.

There’s a second way to qualify for disability with Sjöӧgren’s disease. If you want to qualify this way, you still have to have at least two of the constitutional signs listed above. In addition, you must show that Sjögren’s disease causes a marked limitation in your social function, your ability to complete daily living activities on your own, or your ability to complete tasks on time.

When it comes to Social Security, having a marked limitation means that your ability to function is significantly impaired. Proving that you have a marked limitation can be challenging. You’ll need to show that Sjögren’s affects your ability to do your specific job. Think about whether there are tasks you can’t complete or can’t do in a timely manner. If you can’t complete reports on time because your eyes dry out when you look at a computer that long, explain that. Note that these examples should focus on your job. Social Security primarily considers how your condition affects your ability to work.

You may also need supporting documentation for the Social Security Administration. Your doctor can provide documentation of your diagnosis and any tests they’ve run that show how Sjögren’s interferes with your life. Your boss or co-workers can submit statements about how it interferes with your ability to work. All of this information can help you prove your claim and may allow you to get disability benefits for Sjögren’s disease.

Appealing a Disability Claim

The application process for disability through Social Security can be long. It’s even longer if you need to appeal your claim. If Social Security rejects your initial disability claim, you don’t have to accept that decision. There are four levels of appeal.

Reconsideration is a level asking someone else to review the documentation you’ve already submitted to consider your case again. After that, you can request a hearing with a judge who will also consider your case. If you’re still not happy with the decision, you can request that an Appeals Council look over your case. Finally, you can file with the federal district court in your area so they can look over your case.

There are disability lawyers and benefits specialists who can help you through this process if you’re not comfortable doing it all yourself. They may be able to help you get the disability income you need if you can’t work because of Sjögren’s.

Sjögren’s Disease and Workplace Accommodations

In some cases, you might be able to continue working with Sjögren’s disease as long as you can make certain changes to your job or to when, where, or how you work. These changes are called workplace accommodations.

Under the Americans with Disabilities Act (ADA), you have the right not to face discrimination at work because of an illness, medical condition, or disability and to ask for certain workplace accommodations. The ADA usually covers employers with 15 or more employees, and some states cover smaller workplaces. There are several different kinds of accommodations that you can request.

• Changes to your responsibilities at work — You may need to ask for fewer responsibilities, or to have those that are difficult for you because of Sjögren’s to be reassigned.
• Special equipment to help you work — This may include a more ergonomic workstation, wrist rests, or other items to make working more comfortable.
• Changes to your schedule or environment — If you need to sit instead of stand or work from home on days when your symptoms are bad, these fall into this category.

You can check with your healthcare provider if you need some ideas about changes you could make to keep working with Sjögren’s. They may have additional ideas based on what they’ve seen other people do. Sometimes, they can write a letter to your employer that offers medical proof of your claims about being diagnosed with Sjögren’s and what you need in light of that.

Asking for Workplace Accommodations

Once you know what accommodations you want and need, it’s time to talk to people at work. You may meet with your supervisor or someone in Human Resources. You don’t have to share your exact diagnosis to ask for accommodations, but you can if you want to. However, you need to explain how your symptoms affect your work and what changes would help. Your employer may ask for a short note from your doctor that describes your work limits, not your full medical history.

You’ll also want to document your request in writing. Your employer may or may not require this, but it can be a good way to show exactly what you asked for if there are any questions later. It can also be a good way to help everyone involved remember what you all agreed to, in case someone forgets, or if you get a new supervisor who needs to know about the situation.

Your employer can deny your request if it’s too costly or hard for them to meet. This is called undue hardship. They may offer you a different accommodation, instead. If you disagree with their decision, you may have additional options.

Many employers have an internal process for resolving disputes. You can use this to try to get the accommodations you need. You can also file a charge with the Equal Employment Opportunity Commission (EEOC), which helps prevent discrimination in the workplace. At any point in the process, you can also work with your rheumatologist and an employment lawyer to figure out what your next steps should be.

Sjögren’s Disease and the Family and Medical Leave Act

If you’re having a Sjögren’s flare-up and you think you’ll feel better within 12 weeks, you can take time away from work under the Family and Medical Leave Act (FMLA). FMLA allows you to take up to 12 weeks of unpaid time off work every year while keeping your job safe. Your insurance coverage will also stay the same, as if you were still working.

You can talk to your employer about what they need before you use this leave. Most of the time, they’ll need documentation of your medical diagnosis and its severity. A healthcare professional who knows you and your case should be able to provide this. This leave can help you get the most out of a Sjögren’s treatment before you have to go back to work.

Join the Conversation

On MySjӧgrensTeam, people share their experiences with Sjögren’s disease, get advice, and find support from others who understand.

Have you qualified for disability benefits because of Sjögren’s disease or received workplace accommodations? Let others know in the comments below.