April is Sarcoidosis awareness month. If you have Sarcoidosis, you know how frustrating it can be to try to live a normal life, especially while trying to maintain employment.
Unfortunately, Social Security does not have an impairment listing specific to Sarcoidosis, so obtaining disability can be challenging because the disease can affect every system of the body from skin, lungs, lymph nodes, joints, skeletal, muscles and soft tissues, organs and even the nervous system.
What is Sarcoidosis? For those of you that haven’t had to deal with this disease, Sarcoidosis is an auto-immune disease that creates non-caseating granulomas in tissues, organs or any other system of the body (sort of like having scar tissue masses form in various areas of the body).
The granulomas build up in whatever system the Sarcoidosis is attacking and it interferes with your body’s ability to function. People with lung involvement have a very difficult time breathing, people with heart involvement can end up with serious cardiac function issues, and people dealing with nerve involvement can end up with constant nerve pain, movement disorders and may even eventually experience a shutdown of the central nervous system.
It can also cause blindness if it attacks the optic nerve. Most people with Sarcoidosis also experience widespread pain, extreme fatigue, depression and anxiety in addition to dysfunction in the affected body system(s).
I was diagnosed with systemic Sarcoidosis in 2000 through a liver biopsy that was done because of extreme fatigue and abnormal liver function tests. At the time, the doctor believed Sarcoidosis primarily affect the lungs, and since my x-ray was clear, I was told not to worry about it unless I started having breathing difficulties.
This caused me to go several years without treatment, and all the while, Sarcoid was slowly attacking my muscles, ligaments, tendons, liver and nervous system. It wasn’t until 2009 when the Sarcoidosis was raging out of control and attacking my nervous system that I realized something was very wrong, and I set out to try to find out what was wrong with me.
I had a movement disorder and boy was I moving. I had a full body tremor, and doctors seemed helpless to diagnose my condition. It took me until 2011 before I decided to obtain all my medical records for the past 15 years myself, and began researching Sarcoidosis in detail to learn that this disease can affect a whole lot more than someone’s lungs.
In 2012 I finally met with a Rheumatologist and he confirmed what multiple specialists kept dismissing, my Sarcoidosis diagnosis. After beginning treatment for my Sarcoidosis with an immune suppressant and doing everything I could to lower my inflammation levels, my movement disorder slowly calmed down.
I still have it and it can pop up when I’m under stress, but generally it’s well controlled at the moment. If my Rheumatologist hadn’t been able to get my symptoms calmed down, I would have been fighting to get my Social Security Disability benefits established.
So, how do you prove you can’t work due to a disease that is slowly progressing and usually in multiple body systems? It takes some work and a skilled advocate to assist you in proving your claim.
I would not recommend that someone try to get benefits established without having a knowledgeable advocate, because it’s highly likely you will need to go all the way to a hearing before an administrative law judge for benefits to be granted. Sarcoidosis does not usually fit neatly into any one category of impairment.
Proving disability will require the advocate first make sure your Sarcoidosis has been diagnosed through a biopsy of some kind, and that the test results are in you file, even if it has been years since your confirming biopsy.
Then, your advocate will need to work with your physicians and obtain statements and any “objective” medical evidence (tests/functional evaluations etc…) that show you are experiencing symptoms of such severity that working an 8 hour day, five days a week is not possible.
Besides getting your medical record documentation, proving your claim will likely require obtaining statements from others about their observations of your function, and possibly obtaining a statement from your past employer.
There are things you can do that will greatly assist any attorney in proving your claim. You can make sure that you obtain and keep a copy of the diagnostic biopsy test. You should also be treating with a Rheumatologist, and any specialist that is helping you with your most severe symptoms.
For example, in addition to seeing your Rheumatologist, if your Sarcoidosis has attacked your lungs see a pulmonologist, if your Sarcoidosis has attacked your heart see a cardiologist, if it has attacked your nervous system also see a neurologist. If your Sarcoidosis has attacked multiple body systems, it’s important to continue treating with several physicians that can effectively assist in treating and documenting all your symptoms.
The more information there is that documents your ongoing difficulties, the more likely it is that your Social Security Disability appeal will be successful.
Even if you are granted Social Security Disability benefits, I still recommend you continue to treat with all your specialists and “monitor” the progression of your disease from year to year.
Social Security does continuing disability reviews every few years, so you want to make sure that there will be ongoing medical record information that supports your continued disability.
If you have been denied Social Security benefits and are dealing with an auto-immune condition, like Sarcoidosis, feel free to contact our office.