Both my wife and I are on SSDI, although for different reasons. I have type 1 bipolar disorder and severe depression while my wife suffers from a particularly severe case of fibromyalgia. Fibromyalgia is a chronic disorder characterized by severe, widespread musculoskeletal pain accompanied by fatigue, sleep, memory and mood issues. There is no cure and it's evident that experts in the field are far from understanding the disease much less curing it. She was not happy to be forced from leaving her job as a respected network security professional. The mere act of typing was causing her paralyzing pain in her arms. It was during a cruise vacation to Alaska six months later where she was less active that we realized that her working days were over. She was just 34 years old at that time. Her company provided her with six months of short-term disability at which point her disability insurance company was supposed to provide ongoing payments. They denied her claim. It took six and a half years to get them to approve.
It was also a time when half of the medical community considered fibromyalgia to be a hoax, much like chronic fatigue syndrome was dismissed before at least some doctors found enlightenment. There is no definitive method to diagnose fibro save for ruling everything else out. We saw a half dozen doctors who ran a battery of tests to eliminate MS, MD, RA, and others. It took a full year to get a diagnosis. Then the real challenge began.
We did our homework on applying for Social Security Disability Insurance (SSDI). We learned that 85% of fibromyalgia applications were denied. Often the problem was that the Social Security Administration (SSA) hadn't received the doctors' records in time to make a decision. This is where most people cease their efforts. You are entitled to two appeals and then the opportunity to take your case before a federal administrative law court judge. Only 15% of applicants work through all of the appeals and court hearing, but 85% of the people with fibromyalgia who do receive benefits. Thinking about that brings you to the instant realization that the SSA saves a tremendous sum from not paying people who don't go through the rigor of the process which can take 3-4 years.
Most importantly, be certain that all of your doctors are cocksure of your fibromyalgia diagnosis and are willing to support your disability claim. The best way to do that is to ask your doctors in a very direct way. Take no corners in your inquiry. If he/she is not on board, your efforts are crippled. You must find doctors who will make it clear to the SSA that you have the disorder and are incapable of working in any capacity. If you have any doctors who have doubts, fire them. I'm very serious. The doctors' records you have to submit to SSA have to be unanimous in supporting your claim.
A further obstacle is that during your application period, you can't work. For some people, especially the poor and financially distressed, this is a real issue. It's likely that even with the overwhelming need to bring in an income, your body will be incapable of working on even a limited schedule. Fibromyalgia cases can vary in severity and some people are more able to be more active than others. Your mileage may vary. California emissions.
We also learned that it was wise to keep a record of how you are feeling every day - what your pain levels are (1-10), where you are experiencing the pain, how it is limiting your activity, what medications you are taking. If you reach administrative law court, it makes for a great evidentiary piece that can make the difference in winning your case. Incidentally, if you are taking illegal drugs - self-prescribed medical marijuana warning - you will lose your case outright.
Once you win your SSDI, they will pay you retroactively back to the date of your original application. This can be an impressive lump sum. This brings me to the subject of getting a disability attorney. They are often seen on television commercials and have a legitimate purpose in the process. Here's the problem - They are civil law attorneys who are paid on a percentage basis of the monies they recover. If you bring them in to help you with the application and appeals process, it is not in their best interest to succeed for their clients until the court hearing since they can take the bite out of the largest lump sum possible. Apply and appeal on your own. If you are unsuccessful with those, retain an attorney at that time. That way if you succeed with your application of one of your appeals, you keep your entire lump sum. There are non-profit organizations that will help you with your application and appeals that likely won't charge anything.
Finally, I want to talk about the application itself. It's a dog. They want a tremendous amount of information that you won't be able to just rattle off on your first sitting. The online application allows you to save your work and come back to it later. Take it a bit at a time. They pay you retroactively to the day you begin the information entry, not the application submission date. There is a notes section where you can add additional information. Use it. There are a long list of symptoms associated with fibromyalgia. You will not have all of these symptoms but you will identify with most of them. Pain comes in different ways - stabbing, aching, burning, referred, tactile, throbbing, shooting. Here is your chance to write them down. Write them all down, every single symptom you experience. It provides a way for the SSA to understand what you're experiencing rather than just your work history and how long you've lived at your address. Frankly, this tip applies to any SSDI application. Your chances of being approved earlier are enhanced by humanizing your suffering to bored bureaucrats.
I hope this brings some insight and relief to people in the throes of the disease and the overwhelm that comes with working through the SSDI circus. If you've applied before and been denied and felt defeated, reapply. Even though many politicians are up in arms at the numbers of people on disability and the expense they represent, it's also evident that too many people are not on disability who should be.
I wish for you moments of true happiness in the midst of your pain.