Lupus, or systemic lupus erythematosus (SLE), is a chronic auto-immune disease, specifically a connective tissue disorder, that affects multiple organs or body systems such as the joints, kidneys, brain, intestines, or eyes. Some people have mild symptoms such as joint pain that are controllable with medication, but others suffer serious organ damage such as decreased kidney function. In addition, some patients experience problems that make it difficult to work, such as decreased cognition, memory, and concentration ("lupus fog"), malaise (general discomfort and uneasiness), anxiety, depression, or severe fatigue.
Adults with SLE may be eligible for Supplemental Security Income (SSI, for low-income people) or Social Security disability income (SSDI, for those who paid taxes into the Social Security system). The SSA details how significant the functional impairments caused by lupus must be for it to qualify as a disability. Discoid lupus is a form of lupus that attacks only the skin and causes a rash, but the Social Security Administration (SSA) has an official disability listing only for systemic lupus erythematosus (SLE).
If your symptoms don't meet the Social Security Administration's (SSA's) official listing for SLE, you still might be able to get disability benefits based on a medical-vocational allowance if you can show that lupus reduces your capacity to work so much that there are no jobs you can do, considering your education, your prior job experience, and your age.
The SSA's official listing for lupus, listing 14.02, is fairly complicated. There are two ways you can satisfy the listing: by fulfilling certain required medical criteria or by fulfilling certain required functional limitations. Both ways require that your medical record show that you have a diagnosis of lupus and two of the four of the following constitutional problems:
In addition, you need to fulfill either the medical or the functional limitations for lupus:
Your lupus must affect two or more body systems or organs, such as kidneys, lungs, heart, or brain. At least one of the body systems or organs must be affected to a moderate degree of severity or more. Affected organs/body systems can be:
Your lupus must repeatedly manifest itself and cause one of the following functional problems:
It's possible that your lupus is affecting only one organ or body system severely, such as your kidneys, but is not affecting another system more than slightly, so you might not fulfill the medical criteria. And if you are still able to take care of yourself (feed yourself, clean your house, shop for your household needs, etc.) and maintain a social life, and you have no mental problems that keep you from completing tasks, you might not fulfill the functional limitations criteria. But if you unable to work a full-time job (say you require kidney dialysis twice a week), you still deserve disability benefits. In this situation, you may be able to qualify for benefits because of reduced functional capacity.
As the next part of the disability determination process, the SSA is required to consider the effect of your lupus on your daily activities and ability to work. After reviewing any restrictions your doctor has recorded in your medical record, like no lifting or operating hazardous machinery, the SSA will give you a rating of the type of work it thinks you can do. This is called your residual functional capacity (RFC).
If you have any physical restrictions, such as an inability to lift more than 25 pounds, the SSA will give you a physical RFC. A physical RFC will rate your ability to do sedentary work, light work, or medium work. For instance, if you cannot stand for at least six hours per day, you should get a sedentary RFC.
If you are given a sedentary RFC, the SSA will evaluate whether you can do a desk job or other sitting jobs. The SSA will take into account your education level, age, and experience when determining if there's any kind of work you can be expected to do. If there isn't, you would qualify for benefits under a "medical-vocational allowance." But if you can read and write, the SSA is likely to find that there are sitting jobs you could do, and won't find you disabled. But for those who are over 55 and have little formal education and skills, your chances at disability benefits under a medical-vocational allowance are much better.
There's also a chance that you'll be found unable to work even if you're younger and have lupus. If your doctor has given you severe restrictions, such as having to change your position every hour, you could get a "less than sedentary" RFC, which would mean there are no jobs you can do.
If you also have mental impairments, such as an inability to concentrate because of mental confusion ("lupus fog"), the SSA will give you a mental RFC. A mental RFC will rate your ability to do skilled work, semi-skilled work, or unskilled work. If you have a mental RFC for unskilled work and a physical RFC for sedentary work, the number of jobs you can do is greatly lowered—there are relatively few unskilled sedentary jobs. This will increase your chances of getting a medical-vocational allowance. If the SSA believes you can't even do unskilled work, you would get a "less-than-unskilled" RFC and be granted disability benefits (though this is rare).
After you apply for Social Security disability, the SSA will request your medical records. The SSA will want to see your medical history, results of a physical examination, laboratory results of blood work, and any medical imaging (x-ray, MRI, CT scans, etc.) and biopsies that your treating doctor has ordered to diagnose your lupus and its severity. Your records should show regular doctor visits over a period of time. You also need to show that you've been taking the medication your doctor has prescribed for at least three months before applying for benefits (to determine if the symptoms of disease continue despite the prescribed treatment).
SLE is a disease that commonly has fluctuations: flare-ups (exacerbations) followed by period of remission. You should visit your doctor with each exacerbation, so that your doctor can record your symptoms and how they are affecting your day-to-day life and ability to work.
To set up an appointment to submit an application for SSI or SSDI through your local SSA office, call the SSA at 800-772-1213. In your application, include how your lupus is affecting your ability to work, including how may sick days you are needing to take for flare-ups or for medical treatment.
If you've been diagnosed with a serious medical problem caused by lupus, such as kidney disease, heart problems, or arthritis, you should also apply for disability benefits under the specific disorder. For instance, if you have reduced kidney function requiring chronic daily dialysis, apply directly under kidney disease and you'll automatically qualify for disability. The SSA also has impairment listings for coronary heart disease and other heart problems, pulmonary insufficiency and other respiratory problems, inflammatory arthritis, and anxiety.
If you need to apply for SSI for a child with lupus, the rules are different; see our article on qualifying for disability benefits for a child with lupus.
It will likely take three to six months for the SSA to determine whether you are eligible for disability benefits. If you are denied, you'll need to request a reconsideration of your claim, which will take another two to three months. If you are denied again, you'll need to request a hearing in front of an administrative law judge (ALJ). It can take 9-18 months just to get a hearing scheduled.
Just like lupus is difficult to diagnose and treat, it is also difficult to get Social Security disability benefits for lupus. Especially if you are initially denied benefits, it makes sense to hire an attorney with experience with lupus cases. For instance, a lupus disability lawyer will know what questions to ask your doctor about your functional limitations to get a "less than sedentary" physical RFC or "less than unskilled work" mental RFC.