Wednesday, April 2, 2014

Disability Discussion

Reader Erica is asking Reasonably Well's readers to share their experiences with applying for SSD (social security disability). She's had a difficult time with this as many of you have. Here's her questions:

There is so much waiting involved with not only this disease.. waiting for meds to work, waiting for pain to subside, waiting to feel better, waiting for the doctor…. And then of course the process of filing for SSD… complete a ton of paperwork and wait for a decision, get denied and wait for months for a hearing to appeal… and now wait for the judge’s decision. I am losing my patience to be honest.
I was suggesting a question to your readers about their experience with SSD… the time it took, their process, attorney? No attorney?  I am also wondering, God willing, if I am approved, what is my date of disability? The date I originally applied for SSD? The last day I was able to work? The last day of my short term disability? … So many questions huh?  I have had a lot of time to ponder lol
The patient education sheet from the Sjogren's Syndrome Foundation regarding SSD is very helpful so I have reprinted it here:
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
I was very fortunate in that I was approved on my first application for SSD. I think that the fact that I attached multiple sheets of paper including extensive details about my problems helped a great deal.

So what do y'all think? What was your experience if you have applied for disability through the Social Security Administration?


Kate S said...

I applied using a lawyer, as the insurance company that I got my LTD from required me to apply, but supplied the lawyer for free. BTW if you use a lawyer, there is a cap on what they can receive - $6000. I know that sounds like a lot, but compared to what your benefits will be over the next 10 or 20 years, not so bad.

I had pretty good documentation, and am in my 50s, and got it first time around. I have read that age can be a factor - that they are less inclined to give SSDI to someone who is 30 than someone who is 55.

Your disability date will usually be the date you claim you could no longer work, but they can adjust that date based on some factors.

The other thing is that Disability then get you Medicare. Two years after your disability date, you get Medicare, which is a big help if you don't have insurance.

Anonymous said...

I also received SS Disability on the first try. I applied in June and was approved in mid-December. The money I got started in January back-dated to October. A few things probably helped with my application. I lost my job because I had no more sick leave; I was nearly 60; all of my doctors were at the same clinic so my medical records were all together; and, I focused on answering questions in terms used in the application. I'm grateful I have disability income.

Anonymous said...

I was diagnosed with Sjögren’s 4 years ago. I have been able to still function at work. The fatigue flares up the most. And I do miss more work days every year. I heard it takes a year of not working in order to show you can no longer work and all the hoops you have to jump. I fear is not being able survive with any income that long! And I know for some states when people try to go through the process gets turned down as long as they can move there arms and legs they can find work! So sad. Not something I am looking forward in going through.

Shara from Seattle said...

I've noticed that too. If you have a regular work record helps. I've been in jobs that I kept my own hours. When I married, those four times, I had lot's of periods when I stayed home per my spouses desire. I didn't get paid for being the care giver to my grandmother or mother in law until they died. I worked under the table for another woman until she had to go into nursing care. The government didn't give a shit about that. I worked for people who didn't pay taxes. I had my own unsuccessful business and didn't make enough money to file. I get into a real estate career that was just starting to take off and my UNKNOWN and UNRECOGNIZED took off and I had to HAND MY CUSTOMERS to my boss because I couldn't think or function anymore. I also had a cyst on my ovary none of my doctors that I crawled cared to take care of. I didn't have insurance and my husbands insurance wouldn't let me on his. I had to run naked into another county to get a doctor to pay attention to me. If I could do that now will SSI I would. Dear, I was told by a Dr. from the start, in a whisper, that I needed to file with SSI from the beginning. I am on my third try. Don't worry, if you don't win freedom you can always file again. Another lawyer will come. Even the attorneys I have now were thinking of cutting me lose because I was in the position you are right now. They have to win to get paid. Thankfully the doctors accidently found a brain mass that is inoperable. After that they felt sorry for me and seemed all fired up to got to bat for me again. If I lose when I go in again they are done. I am not. An attorney for Molina, my insurance guys, called and said that they want to be my next ones. This lady sounded exasperated when I filled her in on what is happening.She said. "We know that Shara, we're your insurance company." Finally somebody sounded like they knew what Sjogrens Syndrome is but,I'm not going to be holding my breath. You can't count your chickens till they come home. I hope you never prayed to God for patience because you are going to learn what it is.- Sorry Julia, I didn't mean to make it so long.

Unknown said...

I was fortunate and was approved in one month but only because I had helped others apply in my human services job and knew what to anticipate regarding the application process. I do think it is important to document everything but I also sent in pictures that were quite convincing showing various aspects of my disease. This took extra effort on my part but once I was assigned an evaluator was easy to do. Hard to dispute photos, as a pictures says 1000 words!

Shelley S.

ShEiLa said...

I will use your advice about page after page of detail... Next time I apply. The first time I was denied. Bummer! But I am not alone.

Unknown said...

The filing process for SSDI can really test one’s patience, which is why getting a lawyer is a practical decision, particularly if a claim has already been denied once. A lawyer can serve as a representative of the applicant at any stage of the SSDI appeal and provide legal advice at the same time. And the best time to do it is upon receiving the letter of denial. Because an applicant only has 60 days to file the request for reconsideration. So the sooner they seek help, the better chance they stand to get an approved claim. I hope this helps.

Brad Post @ Jan Dils