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Real members of MyLupusTeam have posted questions and answers that support our community guidelines, and should not be taken as medical advice. Looking for the latest medically reviewed content by doctors and experts? Visit our resource section.
A MyLupusTeam Member asked a question ๐Ÿ’ญ
Birmingham, AL

I have it as well as Myasthenia Gravis, which is an autoimmune neuromuscular condition. I have been denied not once but twice. I am becoming discouraged to say the least. I do have a lawyer that I have been working with for over a year now. I thought having a lawyer would help me the second time that I applied...but I was still denied. Just frustrated..

February 18
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Answer Summary

Members rallied around someone feeling discouraged after being denied disability twice for Lupus and Myasthenia Gravis, with many sharing that... Read more

Members rallied around someone feeling discouraged after being denied disability twice for Lupus and Myasthenia Gravis, with many sharing that multiple denials are common and not a reason to give up. Several members offered practical tips including documenting everything you can no longer do, gathering all medical records, informing your doctors you are applying, and using strong language to describe fatigue, brain fog, and how symptoms affect daily life. A recurring theme was the importance of self-advocacy, with some members getting approved without a lawyer by submitting thorough records, while others recommended resources like Atticus.com and choosing an attorney with a strong success rate.

A MyLupusTeam Member

I have been on disability for 30+ years. I am not sure what the definitive factor was that helped me get approved. Though I do believe that having lupus cerebritis (neuropsychiatric SLE) contributed because I was sent to see Social Security's doctor for cognitive function tests before approval and a few years for follow ups. I was so ill that I spoke to the judge by phone rather than appearing in person.

My tips would be to document everything. Including what you can no longer to do at home and work and the amount of sick days you have taken. Get access to your records going back to your first symptom, even before your diagnosis.

Let all of your doctors know that you are applying for disability and stress the reasons for doing so. This will you get them on board with you.

Include fatigue and brain fog and how they affect you with work and your relationships. Use strong words to express the severity of your symptoms.

Be patient, it takes time to get approved. SS recently started a program to fast track people who are financially burdened without any source of income.

Some people here reported success with a disability attorney. They don't get paid until you do. If you go this route, choose wisely the attorney you use to represent you and find out their success rate.

I hope this helps.๐Ÿ’œ

February 18 (edited)
A MyLupusTeam Member

I was on social security disability, but due to age, am now on regular social security. I also fought for disability through the state i worked for. I.wss actually approved, but it took a bit of work.

February 18
A MyLupusTeam Member

Go to all your doctors and ask for your list of meds, what their for, first time you were diagnosed and hospitalize stay. And current diagnosis and symptoms.
And all your doctors names.
An admitted to SSA Administration Office.
Do it online.....

March 16 (edited)
A MyLupusTeam Member

I was diagnosed in February 20,2020
I was hospitalized for a month, it was terrible. I couldn't understand why I had this disease and just now knowing about. My doctor explained to me that Lupus was like cancer it will/can sit dormant in your body for years then appears.
I was hospitalized for a month, after coming home my daughter told me apply for ssi, (I was that's not going to happen) so I applied and five months later I was approved.
What I did learned is that you have to advocate for yourself because some doctors will not, their push you aside.

February 19
A MyLupusTeam Member

Yes I was. It has since switched over to retirement SS.

February 19

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