Saturday, June 25, 2011

Sjogren's Syndrome and Filing For Disability

The Sjogren's Syndrome Foundation has put out yet another of it's excellent patient information sheets. 

Patient Education Sheet
Tips on Obtaining Disability Benefits from the Social Security Administration (SSA)
The SSF thanks Linda Dorfner Charles, BSN, RN, for authoring this Patient Education Sheet. Charles assisted the Sjögren’s Syndrome Foundation (SSF) in its long-time and successful advocacy for a specific federal disability listing for Sjögren’s syndrome.

Tips on Obtaining Disability Benefits from the Social Security Administration.

  • Know that documentation is key to winning your case! Keep a journal of your symptoms and cop- ies of all records from lab tests, doctors’ visits and hospitalizations.
  • Review your medical records to ensure legibility and completeness. 
  • Submit documentation in order of occurrence. Show disease progression and resulting limitations,
  • including side effects of all current medications.
  • Have your doctor highlight the fact that Sjögren’s symptoms can unpredictably wax and wane, as SSA forms are not tailored to these features.
  • If applicable, state that during a flare-up, you are unable to perform specific activities. Include basic self-care or activities of daily living (ADLs) such as eating, walking, bathing, lifting, shopping, cook- ing, reading, driving, working and household chores.
  • Document what it takes for you to get through every hour of a 24-hour day. Include what you must do to alleviate symptoms, e.g. every time you use eye drops. State how each symptom affects you (frequency and duration), e.g. how often you are fatigued and what it prevents you from doing. Don’t worry about sounding repetitive.
  • Cite the impact of your combined symptoms on your function and productivity, including lost work days, job status, depression, and loss of relationships and social interactions. While one symptom alone might not be considered disabling, the combination of symptoms can be disabling.
  • Describe the overall impact of Sjögren’s on you and your family’s lives. Don’t forget loss of income and high treatment costs (drugs, OTC products, medical co-pays, frequent doctor visits, psycho- therapy and physical therapy).
  • Explain the negative impact of the workplace on your physical well-being. For example, dry air, fluorescent lighting and computers aggravate dry eye and travel and sleep deprivation worsen fatigue, joint pain, digestive symptoms and the ability to concentrate.
  • Use educational materials to help your case. Visit the SSF Web site or contact the SSF for helpful materials.
  • Read SSA disability guidelines for Sjögren’s syndrome. The fact that the SSA now includes specific guidelines for Sjögren’s will help your claim. Go to and enter “Immune System” in the Search feature to bring up the Immune System Disorders Guidelines.
  • Don’t let rejection discourage you! Applicants often are rejected for benefits the first time they apply. 
  • Consider hiring an attorney who specializes in Social Security Disability to help with documenta-
  • tion and to expedite your approval for disability.

For more information on Sjögren’s syndrome, visit the SSF Web site at, call 800-475-6473, email or write to the Sjögren’s Syndrome Foundation, 6707 Democracy Blvd, Suite 325, Bethesda, MD 20817.
Clinicians: Please make multiple copies of this Patient Education Sheet and distribute to your patients. If you have an idea for a topic or want to author a Patient Education Sheet, contact us at


annie said...

Although every country has its own criteria for disability, this is a good general guideline for everyone to follow. Thanks Julia.

Christine said...

As someone who was FINALLY awarded SSDI for Sjogrens, I can say this is very informative and spot-on!

Erminia Cavins said...

“Don’t let rejection discourage you! ” – This is one thing that everyone must keep in mind. You should have faith that you'll get qualified. Even if you get denied, you shouldn't stop there. Sometimes, this kind of incident simply wants to challenge you on how determined you are to obtain disability benefits. On your next try, make sure that you follow the procedures to the tee. It might be long and hard, but it's well-worth it in the end.

Unknown said...

Thanks for sharing, Julia! It really pays to keep your necessary medical documents together, so that they would come in handy, in case you have to file for something related. And I think it will be helpful to do some research regarding the SSA, so you'd at least have the necessary information you need. Better yet, ask people who have already applied and gotten approved to get some firsthand information on the process.

Jason Hayes @ DECORM