Lupus and Disability Benefits

SLE, Working, and Disability

Written by Disability Lawyer Sharon Christie, and Dr. Donald Thomas

Most people with systemic lupus erythematosus (SLE) work because they want to contribute to society and their self-esteem and have better incomes and good health insurance. However, for some, there comes a point where the job itself can become detrimental to the condition.

Choosing to apply for disability can be stressful. If you are not prepared for the application process, you have a high chance of failing to get disability benefits the first time and being forced to undergo an appeals process. In the United States, two-thirds of initial applications for Social Security Disability are denied.

This online chapter of The Lupus Encyclopedia gives you the tools to better navigate the system and get what you are entitled to.

Even if you are not planning to apply for disability, this chapter contains valuable information on maximizing the quality of your medical records so that if you ever do decide to apply, the process will be smoother. It also gives advice on obtaining special accommodations to which you are entitled in the workplace in light of your SLE.


Requesting job accommodations at work

Choosing the right job when you have lupus

Family and Medical Leave Act (FMLA)

Overview of disability

Social Security Disability

Steps to getting Social Security

How Social Security evaluates lupus for disability

How to improve your chance of getting Social Security Disability

What to do after you get disability



Chronic Disease and the Workplace

Continuing to work and dealing with SLE can be difficult. In addition to the usual stress of the job, you are also dealing with doctors’ appointments, taking medications, using sunscreen regularly, avoiding cold temperatures that could upset Raynaud’s phenomenon, avoiding ultraviolet light exposure, minimizing stress, eating a healthy diet, and exercising, while also scheduling that much-needed eight hours of sleep. Although this is a lot to handle on top of a job, you must prioritize your health because if your SLE worsens, it could prevent you from working. Job loss could lead to the loss of income and benefits such as insurance. You can collaborate with your employer to improve your work environment.


Requesting Job Accommodations so you can continue to work

The Americans with Disabilities Act (ADA) is a federal law that prohibits employers from discriminating against people with disabilities. It is intended to help people with disabilities who want to continue working to do so. Thus, it requires employers to make “reasonable accommodations” for people with disabilities unless those accommodations would cause “undue hardship” to the employers. While the effects of SLE vary from person to person, it can be helpful to know what kinds of requests you can make of your employer, depending on your condition. These are listed below, along with accommodations employers are required to make and some ways that you can ensure a healthy and productive work environment.

If you have cognitive impairment or memory problems, ask for

  • written job instructions, when possible, instead of verbal ones.
  • that your list of job assignments be prioritized.
  • flexible work hours and a self-paced workload.
  • memory prompts such as schedulers or organizers.
  • periodic rest periods to reorient.

When you have fatigue or weakness, ask for

  • periodic rest breaks from the workstation.
  • a flexible work schedule and use of leave time.
  • the ability to work from home (telecommuting).
  • an ergonomic workstation design.
  • a scooter or mobility aid if required to travel long distances.
  • changes that could help reduce or eliminate physical exertion

If you have motor impairments (due to arthritis, myositis, or nerve involvement), ask for

  • an ergonomic workstation.
  • alternative computer and telephone access (such as a hands-free phone or headset).
  • arm supports.
  • writing and gripping aids.
  • speech recognition software for computer work.
  • a page-turner and a bookholder.
  • a note-taker.
  • an easy-to-access worksite.
  • parking close to the worksite (make sure that you have handicapped tags from your local department of motor vehicles to assist in getting this privilege).
  • an accessible entrance.
  • automatic door openers.
  • an accessible restroom and break room.
  • an accessible travel route to other work areas.
  • a desk height that accommodates a wheelchair or scooter.
  • that materials and equipment be within your range.
  • a workstation close to other work areas, office equipment, and break rooms.
  • the ability to wear healthy shoes, such as tennis shoes (wide toe box, suitable arch supports, cushioned soles, no heels).

If you have breathing difficulties (from heart or lung involvement), ask for

  • adequate ventilation.
  • a work environment free from dust, smoke, odor, and fumes.
  • a fragrance-free and smoke-free workplace policy.
  • a workplace temperature conducive to your condition.
  • a fan, portable air-conditioner, or heater at the workstation.
  • redirected air conditioning and heating vents.
  • adequate exhaust systems to remove fumes from office machines.
  • the ability to wear a respirator mask.
  • the ability to work from home.

When you have Raynaud’s phenomenon, ask for

  • an adequately warm worksite temperature.
  • a modified dress code, allowing layers of clothes, long sleeves, and a hat while inside.
  • a heater at the workstation.
  • the ability to work from home during cold weather.
  • redirected air-conditioning vents.
  • an office with a separate temperature control

If you have dryness problems from Sjögren’s disease, ask for

  • a humidifier at the workstation. 

And since you have photosensitivity (everyone with lupus does), ask for

  • no (or minimal) outdoor activities between 10:00 a.m. and 4:00 p.m.
  • the ability to avoid reflective surfaces outside, such as sand, snow, and concrete.
  • UV light-protective clothing if work requires being outdoors.
  • sun-protective agents such as sunblock and sunscreens if required to work outdoors.
  • LED bulbs instead of fluorescent, incandescent, or halogen bulbs.
  • adjustable window blinds and window UV light filters.

If any of the conditions above affect your ability to work, ask your doctor to write a note asking your employer for appropriate accommodations. A doctor’s note saying it is medically necessary for your condition is often enough.

You can also ask your doctor to refer you to an occupational therapist (OT), who can assess your working situation and determine what changes or aids are appropriate to request. An OT can also determine if any of them fall under the entitlements of the Americans with Disabilities Act. Having formal recommendations from an OT increases the strength of your requests.

Learn more about the ADA at the US Equal Employment Opportunity Commission’s website. Knowing what is considered a “reasonable accommodation” or an “undue hardship” can help you make your case.

Some requests for accommodations may go beyond what is reasonable, but determining whether they do is not necessarily self-evident. For advice on how to work with your employer, contact the Job Accommodation Network, the Patient Advocate Foundation, Hire Disability Solutions, and the US Office of Disability Employment Policy.

Having the right employer can make all the difference in your ability to continue working with SLE. We have seen some patients with severe SLE with fantastic, understanding employers and supervisors who did everything possible to ensure they could continue working. We have seen others with milder SLE who found their workplace environments intolerable.

The ADA and other protections, such as the Family and Medical Leave Act (FMLA, described below), can help make working in a demanding environment easier. However, sometimes it is better to find a different position or workplace rather than deal with a job that is too stressful or an employer unwilling to provide assistance.

Job benefits are also a crucial consideration. Good health insurance and retirement plans are critical when dealing with a complex disorder like SLE. Sometimes it is wiser to choose a job with excellent benefits than one that pays more.

Similarly, choosing a workplace with less stress and hourly demands can be better than taking a high-stress job that pays more. You can find many online articles that provide recommendations for good jobs for people with chronic illnesses, pain, and other problems such as fatigue.

Many businesses and jobs offer their employees ongoing, additional job training. It’s a good idea to take advantage of these offers as much as possible. The more workplace skills you develop, the more open doors and flexibility you have. If you get to a place where you need a less stressful job, having extra skills can help you find one that is better for you.

Of course, finding a suitable job for a particular medical condition is not easy. If your situation isn’t ideal, there are things you can do to help better it.

Educating Co-workers

One is to educate your supervisor and co-workers about SLE. Although your medical condition needs not be addressed, providing them with information can be helpful. If you decide to do so, remember that most people are too busy to spend much time searching for something that does not pertain to them. See if you can find a short, easy-to-read pamphlet at your doctor’s office or on the internet that you can share.

An additional challenge for people with SLE is that most do not appear ill. So, it is easy for others to think they are exaggerating their problems. This “invisibility” aspect of SLE is another reason it may be a good idea to attempt to educate your supervisor or at least protect yourself through measures such as the FMLA, discussed below.

Be realistic about your limitations. Do not volunteer for work activities that are not required if there is a chance you may not be able to follow through due to fatigue, pain, or difficulty thinking. A supervisor is often more likely to remember when you did not get something done that you volunteered to do than when you “saved the day.” Also, keep in mind your supervisor’s goals while doing your work. If you do your job with those goals in mind, you are more likely to make your supervisor happy.

Family and Medical Leave Act (FMLA)

The Family and Medical Leave Act (FMLA)allows employees to take up to twelve weeks of unpaid leave annually for various reasons, including“a serious health condition.”

FMLA applies to all public agencies, all public and private elementary and secondary schools, and private companies with fifty or more employees. To qualify, you must have worked at least 1,250 hours for your employer during the previous 12 months.

Having SLE, taking your medications, and having to see your doctor regularly satisfy FMLA medical criteria. SLE patients should have their doctors fill out FMLA paperwork in advance to cover absences from work that are required for their health care. If you become ill from SLE and need additional time off, this must be added to your FMLA paperwork. FMLA forms can usually be obtained from your employer’s personnel department or the Department of Labor.

Disability Overview, Eligibility Criteria, and Application Procedures

Obtaining disability benefits is a long, complex process. While people who must stop working due to the severity of their SLE may have to apply for them, there are many downsides of disability that they should consider.

Loss of income is one. People who stop working and rely on disability checks usually have much less money. The amount is usually barely enough to survive. In 2023, the maximum monthly payment for Supplemental Security Income (SSI, described below) for disability was only $914 ($1,371 for couples).

Not working can also affect our self-esteem. According to the Bureau of Labor Statistics, in 2021, Americans who worked full-time spent an average of 8.5 hours per day performing their work and doing work-related activities. But regardless of how many hours we do or don’t work, what we do for a living becomes part of our identity. Without that job, we can find ourselves in a vacuum. Unless we can fill it with meaningful activities, we can develop feelings of worthlessness and depression.

Along with the loss of income and self-esteem, people who become disabled often find that friends and family treat them differently. In addition, their circle of friends can change or disappear, and they maynotseefamilyasfrequently. As a result, they may feel isolated. This can result in a vicious cycle of isolation.

Losing Insurance

Insurance loss due to losing a job can be a big problem. The number one cause of poor outcomes in SLE patients is not being compliant with all aspects of treatment, including taking medications, seeing doctors regularly, and keeping up with medical tests. Although the quality of health insurance varies from job to job, it is usually better than someone on disability can afford. Suppose you are on Social Security Disability Insurance (SSDI), described below. In that case, you must wait twenty-four months before you are eligible to get Medicare. This waiting period could be catastrophic for someone whose SLE is severe enough to require them to stop working. And if someone gets Medicaid, the medical care available is usually inferior to those with private insurance. To read about Medicare, Medicaid, and private health insurance, see our other blog post—Health Insurance for Lupus Patients: Affordable Health Care.

Given all the downsides to being on disability, if there is any way that you can keep working, then do everything you can to do so, especially if you have good health insurance. Or if you can no longer perform your job, try to find one you can do, even if it is only part-time. Healthcare insurance for part-time workers is available from some companies. Working part-time in a position with good health insurance can be much better than relying on a small amount of disability income with inferior health benefits.

But if you cannot work and have no choice but to apply for disability benefits, do so immediately. The process can be long and complicated. The following sections of this chapter can help guide you.

Social Security Disability

The two most common US federal assistance programs for disabled persons are Supplemental Security Income (SSI) and Social Security Disability Insurance (SSDI). Both provide monthly income and Medicare health insurance. All US citizens can be eligible for either program. However, under some circumstances, non-citizens can also qualify for SSI and SSDI.

The Application Process

The first step in applying for disability is to obtain an Adult Disability Starter Kit from Social Security. You can get one by calling 800-772-1213 or online.

Suppose you have an easily noted disability (like paralysis, tremors, or speech difficulties). In that case, you might consider applying in person at your local Social Security field office. If the representative easily sees your disability, it could help your approval process. The representative can also ensure you fill out all the forms correctly. Just make sure to go in prepared with all the needed information. The section on “Steps to Obtaining Social Security Disability” will help you with that. Here, we continue to describe the application process.

After the initial application, the next step is for the claims representative to determine if you meet administrative requirements. These involve your work history, financial eligibility, citizenship status, and other nonmedical criteria.

If you meet the initial administration requirements, the claim representative sends your application to (DDS), where the decision as to whether you are medically disabled is made. There, the disability examiner will review your application and then send requests for your medical records to the doctors and hospitals you listed on your application. The disability examiner may also request records from other sources, such as employers, psychologists, physical therapists, and chiropractors.

More Questionnaires

The disability examiner will also probably send you more questionnaires to fill out. These vary from case to case. For someone with SLE, they may include forms to assess fatigue, pain, and the ability to function. It is vital to fill out these forms and send them back quickly.

After receiving this information, the disability examiner summarizes their findings and gives them to a medical consultant, who could be a medical doctor (MDorDO) or a licensed clinical psychologist (Ph.D. or PsyD). This medical consultant assesses whether you have a medical condition that limits your ability to work. This assessment goes back to the disability examiner, who uses it to determine your eligibility for Social Security Disability benefits.

The process takes an average of two years, although it may take only a month or two in clear-cut cases. The length of time depends in part on the complexity of your case, how thorough your doctor’s evaluations and office visit notes are, and how quickly each source sends back the requested materials.

There is a high fail rate for getting Social Security Disability. Nationwide in 2020, only 45% of all applications were eventually approved. State rates varied widely. The lowest rate in 2020 was 33% in Oklahoma; the highest was 69% in Kansas.

Appealing a Social Security Decision

After an application is denied disability, most people appeal the decision. In these cases, the success rates are even lower, with only 14% of people nationwide getting approval. However, a denial means that the applicant will get a hearing. About 50% of all cases that go to a hearing are approved for disability benefits.

Obtaining a successful disability determination depends a lot on your medical documentation. Even if you are clearly disabled, you may not have a convincing case if your doctor does not keep good records. The following section details some helpful strategies you can take to ensure you have a strong chance to support your application. In addition to understanding the process of applying for Social Security Disability (outlined above), it is also essential to understand the definition of disability, how the medical decision for disability is made, and what role your physician has in the process.

Steps to Obtaining Social Security Disability

Social Security Disability determinations follow a series of six steps. You must meet the requirements of each step before moving to the next. If your application claim does not meet the conditions of steps 1, 2, or 3, your claim will be denied. It is possible for people who are disabled by SLE to be approved at step 4 and not have to go any farther in the process.

  1. You must have enough work credits for SSDI.
    People get work credits from the Social Security system throughout their working lives. The number of work credits is based on income and the number of hours worked. Most people who work full-time get four work credits per year. The number of required work credits for Social Security Disability varies by age since it is more difficult for younger people to build up work credits.

If you are 24 or younger, you need only six work credits (around 1½ years of full-time work). If you are 62 or older, you need 40 work credits (about ten years of full-time work). You also must have earned at least 20 credits during the ten years before becoming disabled. You can think of this requirement as having worked full-time and paid FICA (Federal Insurance Contributions Act) taxes for 5 of the previous ten years before your disability. (FICA taxes are the taxes taken from your paycheck to pay for Social Security and Medicare).

There are exceptions to these rules, including those for blind people, widows, and widowers; these are beyond the scope of this chapter.

Note that work credits are not required for SSI benefits (mentioned earlier).

  1. You cannot be employed in a substantial, gainful activity.
    If you are employed in substantial, gainful activity (SGA), the Social Security Administration assumes you are not disabled. You can apply for disability if you are not working or your work income before taxes is lower than the SGA threshold. As of 2023, if your gross income before taxes is an average of $1,470 or more per month ($2,460 if blind), you are usually considered to have substantial, gainful employment. The day you stop working in your SGA is the day you can begin filing for Social Security Disability. If you resume working and earn more than the SGA threshold, you will no longer be considered disabled.
  2. Your physical or mental condition must be severe.
    This means the disease is severe enough to prevent you from performing basic work activities for at least 12 months. It doesn’t mean that the condition is often viewed as severe.

For example, although SLE can be a severe disease, most people with SLE are not considered disabled. We have met a few people who assumed that since they have a diagnosis of SLE, they should automatically get disability. This is incorrect. Your condition must prevent you from being able to work at all, and your doctor must classify your SLE as severe before it is considered a disabling disorder.

  1. You must have a physical and/or mental disability that will last at least one year or is expected to result in death.
    This decision is made by the disability examiner using the information from your treating physician. SLE patients have an advantage when applying for Social Security Disability because SLE is one of the Social Security Administration’s recognized listed conditions. However, it is only advantageous if your doctor thoroughly documents your SLE in your office visit notes. It is described as follows under the headings for SLE 14.00D1 and 14.02:

How Social Security documents and evaluates SLE for disability (14.00D1):

  1. General.
    SLE (SLE) is a chronic inflammatory disease affecting any organ or body system. It is frequently, but not always, accompanied by constitutional symptoms or signs (severe fatigue, fever, malaise, involuntary weight loss). Major organ or body system involvement can include respiratory (pleuritis, pneumonitis), cardiovascular (endocarditis, myocarditis, pericarditis, vasculitis), renal (glomerulonephritis), hematologic (anemia, leukopenia, thrombocytopenia), skin (photosensitivity), neurologic (seizures), mental (anxiety, fluctuating cognition [“SLE fog”], mood disorders, organic brain syndrome, and psychosis), or immune system disorders (inflammatory arthritis). Immunologically, an array of circulating serum auto-antibodies and pro- and anti-coagulant proteins may occur in a highly variable pattern.
  2. Documentation of SLE.
    Generally, but not always, the medical evidence will show that your SLE satisfies the current Criteria for the Classification of SLE put out by the American College of Rheumatology and found in the most recent edition of the Primer on the Rheumatic Diseases published by the Arthritis Foundation.

Donald Thomas’s comment:The Primer on the Rheumatic Diseases has been out of print since 2007. Section b. is in great need of updating by the Social Security Administration.”

Per section 14.02, before qualifying as disabled, the person with SLE must have at least two symptoms: severe fatigue, fever, malaise, or involuntary weight loss. In addition to this, there must be at least two organ systems involved, with at least one of them of moderate severity, or the person must have severe limitations in daily activities, social functioning, or in “completing tasks in a timely manner due to deficiencies in concentration, persistence, or pace.”

The advantage of having an illness on the Social Security Administration’s list of conditions is that it can potentially satisfy disability requirements without any further steps. However, this depends on how well your doctor (rheumatologist) has documented how your SLE was diagnosed, how severe your condition is, and what difficulties it causes you.

 If you satisfy the first three disability requirements, and your doctor documented your diagnosis and the severity of SLE using the “Criteria for the Classification of SLE,” you may qualify for Social Security Disability without going through the additional steps described below.

  1. You must be unable to do the work you did during the previous fifteen years.
    If the disability examiner decides that your physical and/or mental impairments do not automatically qualify as a listed condition, additional steps are required. The disability examiner will list your impairments (that is, what you cannot do) and give them back to the claims representative at the local Social Security office to determine if there are any jobs you can physically and mentally perform with these impairments. On your application claim, you must list every job you have had in the previous fifteen years. If you can do any of these jobs with your medical condition impairments, you will likely not qualify for Social Security Disability. For example, suppose you recently had a high-paying job that you can no longer do, but you previously had a sedentary, low-paying job. In that case, you may be ineligible for disability since you can take a similar sedentary job with your SLE.
  2. You must be unable to work in the US economy.
    If you cannot do any of the jobs you had within the past fifteen years, the claims representative will review the job demands of occupations determined by the Department of Labor using the list of impairments provided by the disability examiner. The claims representative will also consider your age, education, past work experience, and potential when determining if you can work at a different job.

Suppose you have been a carpenter for 15 years and now have back problems that interfere with your work. You could be trained to work on an assembly line (while seated) and not be considered disabled. If you are a physician with severe SLE that renders you unable to manage patients, but you can still do consulting work for $1,500 a month, you would be ineligible for Social Security Disability. The reduction in your pay would make no difference.

Increasing your Chances of Getting Social Security Disability

Suppose you satisfy the requirements outlined in the previous section. In that case, your chances of getting Social Security Disability the first time around will improve by taking the steps suggested below.

  1. Apply early.
    As soon as you cannot be engaged in “substantial, gainful” employment, as discussed in step 2 above, and you expect not to be able to work for the next year due to your SLE, you should apply immediately. If you are found to be disabled by Social Security, you will not be paid disability benefits until you have been disabled for six months. It can take two years or longer to complete the application process, including a hearing with a judge. That time can become stressful due to the loss of income. The faster you apply, the quicker you can get disability and receive benefit payments.
  2. Apply for private disability insurance.
    You are permitted to collect both private disability insurance and Social Security Disability. Check with your recent employer to see if you can apply for disability through your most recent workplace.

If you have private disability insurance or if it is available through your workplace, you should apply for it in addition to Social Security Disability (described below). Every private disability insurance plan is different regarding its definition of disability and its application process. Follow all the steps for qualifying for Social Security Disability described in the next section. It is often easier to qualify for disability benefits from your private insurer.

  1. Hire a lawyer who specializes in Social Security Disability right away.
    It can increase your chances of having a successful outcome. The lawyer fees are the same everywhere since the government sets these rates. The lawyer would get 25% of your back benefits or $7,200 (whichever is less). You would not be required to pay any of your future benefits. You can find the names of Social Security lawyers from the National Organization of Social Security Claimants’ Representatives.
  2. Gather all necessary documents as soon as possible.
    These include
    • Social Security numbers (yours and your dependents’)
    • proof of age such as birth certificate (for you and your dependents)
    • names, addresses, and phone numbers of all doctors, hospitals, clinics, physical therapists, psychologists, social workers, chiropractors, and any other medical professionals you have seen
    • all copies of medical records you have collected
    • a list of every place you have worked and a description of that work during the 15 years before the date your disability started
    • a copy of your past year’s W-2 forms or your last federal income tax form
    • all dates of military service
    • information about any other disability payments you are receiving or that you are applying for
    • if your spouse is applying as a dependent, the dates of any prior marriages (certified copies of divorce papers)
    • if you are applying as a disabled widow or widower, your dead spouse’s Social Security number and a copy of the death certificate
    • if you are applying as a disabled surviving divorced husband or wife and were married for at least ten years, certified copies of your marriage and divorce papers
    • medical history
    • clinical findings (such as a physical exam from a primary care doctor or a mental status exam from a psychiatrist’s note)
    • diagnoses (along with how your SLE meets the American College of Rheumatology’s classification criteria)
  • treatments prescribed, with responses and prognosis (including previous treatments)
  • a statement as to what limitations you have at work and away from work (your doctor should include if you have difficulties with activities at home and socially, such as troubles grooming, dressing, doing housework, interacting with others, etc.)
  • a statement saying that the limitations in your ability to work are expected to last a year or longer.
  1. See your doctor regularly.
    You must have a diagnosis of SLE by a medical doctor documented in your medical records. It is also assumed that you should see a doctor regularly if you are sick enough to get disability. If you are not seeing a doctor regularly, then the severity of your disease is in question.

Ask your doctor to include your physical and mental limitations in the progress notes that the doctor makes of each visit. For example, if you have difficulty with tasks such as working, dressing, or doing household chores, ask that these be included in the note. But don’t overwhelm your doctor with these things all at once. They will be more interested in focusing on your medical care instead of satisfying disability requirements.

As soon as your medical condition has reached the point that it interferes with your ability to work, ask your doctor to include a statement in your progress note that your SLE is severe enough to interfere with your ability to work and that this difficulty is expected to last for at least a year. After that, ask that the statement be noted on each office visit note (progress note). This can increase your chances of being approved for disability.

Detail your diagnosis

In addition, ask your doctor to state how your diagnosis of SLE was made in each note. Most rheumatologists write just “SLE” as the diagnosis on a note, but that notation can be insufficient. What’s needed is a statement of how the diagnosis of SLE meets the criteria for SLE. Ask how your doctor diagnosed your SLE. Suppose your SLE caused a butterfly rash, arthritis, severe fatigue, malaise, positive ANA, and positive Smith antibody. Instead of just putting “SLE” in the note as your diagnosis, your doctor could state, “SLE manifested by butterfly rash, severe arthritis, severe fatigue, malaise, positive ANA, and Smith antibody.” At least one of the organ systems should be identified as moderate or severe (as in “severe arthritis” in the example) to qualify for disability.

If statements about your physical and mental limitations, that your SLE is “severe” and will last at least a year, and how your SLE was diagnosed are included in each note, you increase your chances of satisfying step 4 of the disability process. This can expedite the approval of your disability claim.

Your doctor’s documentation of the medical facts is the heart of a disability claim. However, your doctor has no say as to whether you are disabled. Your doctor’s responsibility is to state your medical diagnosis, prove how your SLE was diagnosed, and state what functional limitations your medical condition causes inside and outside the workplace. Social Security determines whether you are disabled using this information.

  1. If you cannot afford a doctor, visit a free clinic regularly.
    Unfortunately, Social Security does not care if you have insurance or cannot afford to see a doctor regularly. It needs to confirm that SLE is your diagnosis and that you have significant functional limitations documented by a medical doctor. If you cannot afford to see a doctor, regularly visit a free clinic for basic care. Make sure to remind the clinic doctor to list SLE as a diagnosis (including how it was diagnosed). Make sure to get copies of your labs and notes from the free clinic for your personal records. Ask the doctor at the clinic to include in your notes the items discussed in section 8 below. Very few doctors know Social Security Disability requirements, so it can be helpful for you to make this request specifically.
  2. If you have significant depression, anxiety, or other mental health problems, see a psychiatrist or psychologist regularly.
    Many people with SLE have mental disorders, such as depression and anxiety (for instance, panic disorder), that can limit their ability to work. You should regularly see a psychiatrist or psychologist if this applies to you. Because psychiatrists are the experts in medications that treat these disorders, SLE patients typically do better if they see a psychiatrist. Doing so can also increase your chances of successfully getting disability.

Be honest with your psychiatrist or psychologist. One of my SLE patients told me how she stayed in her house for an entire month due to her severe depression. However, when she saw her psychiatrist, she told him everything was fine. Your psychiatrist cannot help with your medical condition or disability unless you are honest and forthcoming.

Social Security does not accept psychiatric diagnoses (e.g., depression) from your rheumatologist or primary care doctor. Social Security will only accept these diagnoses and their associated impairments from a licensed psychiatrist or psychologist. The best person to come to your defense is a psychiatrist or psychologist who knows you well. Otherwise, you will most likely be required to see a psychiatrist chosen by Social Security for an independent examination, in which important matters are easily missed.

  1. Make a special disability appointment with your doctor.
    Social Security requires certain information about specific items for people to qualify for Social Security Disability. Most doctors do not know these items because most lack disability benefits training.

You may very well be strapped for cash during such a tough time. Social Security usually pays for a disability examination from your doctor because it saves them the trouble of having to schedule and pay for an independent medical examination from another doctor. It also speeds up the process. Make sure to talk to your claims representative and the disability examiner at your local Social Security field office to get this approved appointment ahead of time. If either one tells you there are insufficient funds, ask to talk to their supervisor. The supervisor could override the denial and allow payment for such a visit. Press your case that paying for a disability examination with your doctor will save them time and money.

When you are ready, arrange a special visit to your doctor to ensure the proper remarks are placed in your records. Do not expect your doctor to do this during one of your routine medical visits. Suppose your SLE is severe enough to require disability. In that case, your visits with your doctor will usually focus on your medical care, so a “disability evaluation” may be too much for your doctor to manage. Instead, schedule an extra appointment and let your doctor know ahead of time that it is solely for the benefit of applying for disability. Of course, suppose there is a pressing issue about your health. In that case, your doctor will also include that during the visit. However, do not expect non-urgent matters to be addressed. This is not the time to ask for prescription refills either.

What needs to be included

Go to this visit with a list of what needs to be included in the note (if they are true and accurate from a medical standpoint):

  • How your SLE was diagnosed (satisfying the ACR SLE classification criteria)
  • State that your SLE is “severe”
  • Document that at least one organ system is “moderate” or “severe”
  • Include at least two of “severe fatigue,” “malaise,” and “involuntary weight loss” if those have occurred
  • Include often missed problems, like “anxiety,” “cognition problems,” “lupus fog,” “depression,” “bipolar disorder,” and all your positive autoantibodies, including antiphospholipid antibodies
  • How SLE affects your ability to work, do household chores, grooming, dressing
  • If your SLE affects how you function in society
  • If you are unable to complete tasks in “a timely manner due to deficiencies in concentration, persistence, or pace
  • your SLE is severe enough to interfere with your ability to work, and this difficulty is expected to last for at least a year
  • your SLE is a life-long condition (or is expected to last for more than a year)

 Give your doctor this concise list and ask that all applicable items be included in the note. Also, give your doctor a brief list of functional limitations to include in the note. Examples include difficulties with dressing, bathing, doing housework, driving, taking public transportation, completing tasks promptly, forgetting duties at work, pain from work tasks, difficulty completing assignments on time due to memory problems, or conflicts with co-workers, supervisors, family members, or the public due to depression, anxiety, bipolar disorder, or other psychiatric issues. Give specific examples, but do not overburden your doctor with multiple pages of examples.

What else should I bring?

            In addition to bringing the list of things you want to be included in the progress note, bring two copies (one blank and one that you filled out) of a Medical Source Statement (MSS) to the disability appointment with your doctor. When seeing your psychiatrist for depression or other psychiatric diagnoses, bring a mental Medical Source Statement (see item 9 below). These forms indicate what you cannot do because of your SLE. You can download a copy of the documents at the links above or call your Social Security office to get copies.

Most doctors are uncomfortable filling out these forms, and few have received training on how to do so. One way to help is to fill out a sample form and give it to your doctor. Explain to your doctor that you filled out one of the forms as a suggestion as to how your SLE affects your ability to work and that you are giving it to them to help. In addition, make sure to fill out as much of the actual form your doctor will be using as possible (such as your name, address, and personal information).

If your doctor’s office requires that a fee be paid for filling out forms, volunteer to fill out the form yourself. Because doctors are being asked to fill out more nonmedical paperwork every year, most now charge their patients a fee to fill out these forms since they place additional burdens on the doctor and staff, which are not covered by insurance. These forms. If you fill out all your personal information yourself, give a copy of a form you fill out as an example, and pay the fee upfront, you will have a much better chance of your doctor expediting and completing the process.

Additional tips

Do not exaggerate when you fill out your copy of the MSS. For example, where the form asks about your ability to do certain activities, such as “reach down to waist level,” the three choices are “occasionally,” “frequently,” and “consistently.” It is common for people seeking disability to want to mark the least ability in every category, but this can be misleading. In this example, the definition of “occasionally” is “from very little up to one-third of the time and . . . total[ling] no more than about 2 hours of an 8-hour workday.” Most people, even those severely disabled, can “reach down to waist level” more than “occasionally.” Therefore, being as honest as possible is in your best interest.

There are other sections of the MSS where you can easily answer “never” without being viewed as exaggerating. For example, if you have bad knee arthritis, you should not kneel. Kneeling could damage your knee joints more, and you should answer this as “never.” Likewise, if you have rotator cuff tendonitis or shoulder arthritis, you should respond “never” to reaching above the shoulders. Read the instructions on this form carefully and answer the questions as truthfully as possible. Do not answer the questions in terms of “what you want to do and do not want to do,” but instead in terms of how your SLE “realistically prevents or allows you to do these things.”

  1. Make a special appointment with your psychiatrist or psychologist for the disability application.
    The recommendations above for seeing your rheumatologist also apply here. As with seeing your own doctor, it is in your best interest to see your own psychiatrist or psychologist instead of relying on an evaluation by someone chosen by Social Security. However, when you take a copy of the mental MSS to your psychiatrist, ensure it is labeled as the “mental” MSS. When discussing your functional mental limitations with your psychiatrist, make sure to include statements that refer to your mood, concentration, memory, or difficulties with keeping up the pace at work or home. Some examples are as follows:
  • “I make mistakes paying bills due to problems concentrating.”
  • “I have difficulty adequately doing my job and can’t keep up the pace because of memory problems and fatigue.”
  • “I constantly have conflicts with my neighbors and co-workers due to my moodiness.”
  • “My job is too stressful, and I feel like I’m having a nervous breakdown.”
  • “I often stay in the house for long periods to avoid contact with others.”
  1. Be compliant (adherent) with your therapy.
    Make sure that you do what your doctor recommends. This includes keeping your doctors’ appointments, taking your medicines, seeing specialists as recommended, and getting the tests done as asked. Nowadays, it is getting easier for doctors to know when patients are not taking their medicines. Doctors get notes from insurance companies and pharmacies, letting them know when patients are not filling their prescriptions. These forms become a permanent part of medical records. We also check drug levels for drugs such as hydroxychloroquine, methotrexate, tacrolimus, and mycophenolate.

You could be denied medical disability if you are not adherent to treatment. Social Security will assume you are disabled and doing poorly due to your own fault. There are a few exceptions to this rule. These include severe mental illness, below-normal intelligence preventing proper adherence, or religious beliefs that prohibit you from receiving medical therapies.

One of the most common reasons for people not adhering to treatment is not having the money to afford the treatments. If that is the case for you, you should inform your doctor and have this fact documented. Be careful with this, though. If you spend money on unhealthy things (such as cigarettes and alcohol), the inability to afford treatment could become a moot issue.

  1. Keep copies of your medical records.
    This is an excellent habit to get into. Whenever you see a doctor, ask the receptionist or another office staff person for a copy of the latest note, lab results, x-rays, or consultation notes from other doctors. You have the right to have these copies. Keep them well organized. It can become valuable in the future. For example, when you first apply for Social Security Disability, you could have enough medical evidence to get disability simply by giving copies of all your medical records to Social Security. In addition, your doctor usually will not charge you for these copies if you ask for them at each visit. However, if you ask for many records to be copied all at once, you will most likely have to pay a fee.
  2. Keep copies of all paperwork turned in to Social Security. Every time you turn in filled-out paperwork or medical records, always keep a copy. You never know if something may become lost. The same goes for your doctor. Ensure you keep a copy of all filled-out forms and blank ones for your doctor to fill out. If something gets lost, you can easily supply another copy.

            Consider keeping all records in the “cloud.” Commonly used examples include iCloud, OneDrive, Dropbox, and Google Drive. You can take photos of documents with a smartphone or use an app like “Scanner Pro.”

  1. Be organized.
    Keeping track of copies of your medical records and forms can be a challenge. Have a system to keep everything organized. For example, have a file or section of a folder for your labs and put them in chronological order. The same goes for doctor’s notes, x-rays, hospital notes, etc. The more organized you are, the easier you find what you need.
  2. Be polite to everyone working on your case.
    This goes for everyone, from the receptionist in your doctor’s office to the medical assistant who puts you in the exam room to the person you talk to on the telephone. There is no faster way to cause someone to put your needs at the bottom of the list than to be rude to them. Even if you feel your case is mismanaged, smiling and having good relations with everyone involved is always best. You will find that, in the end, things run smoother and quicker.
  3. Be prompt in filling out all forms and answering questions and appeals.
    The faster you do your part in the process, the faster things will happen. In addition, there are time limits on some items.
  4. Keep in contact with Social Security regarding the status of your claim.
    As explained at the beginning of this chapter, your claim first goes to the claims representative at your local Social Security office. It next goes to the disability examiner at your state’s Disability Determination Services. Then, it comes back to your claims representative. Monitor these steps. Make sure things are running smoothly, and see if you can help.
    It is best to speak directly to your claims representative or disability examiner instead of whoever answers the phone at the 1-800 number. Let them know (very politely) that you would like to help in any way possible to make their job easier.
    One of the most common holdups in the process is waiting for copies of your medical records to arrive from your doctors and hospitals. A clue that your doctors have probably received requests for copies of your documents is that you are receiving additional questionnaires through the mail from the disability examiner. The disability examiner usually sends these out at the same time as the request for medical records. Fill out your questionnaires entirely and send them back immediately.

    Follow up
    A couple of weeks later, call the disability examiner to find out if there are any outstanding medical records. If the disability examiner is still waiting for some, ask if the office would cover the costs of getting the documents yourself (often they will).
    You can go to the doctor’s office, let them know it is an important, time-sensitive matter for you to get a copy of all your medical records, pay the doctor’s office fee for the records, then send them yourself to the medical director (keeping a copy for yourself, just in case).
    Calling your disability examiner every couple of weeks and saying, “I am willing to do anything I can to help,” is not out of line. In addition, an excellent question to ask is, “If this were your own claim, what would you do now?”
  1. Keep a disability journal.
    While you are disabled, keep a daily journal. Be thorough. Thus, include not only the difficulties you experience due to your medical condition day by day but also note when you fill out certain forms for your disability claim, when you talk to anyone on the phone at Social Security, who the person was, what you talked about, and so on. This journal can become vital if you must appeal your disability request.

It can become a full-time job keeping up with your disability application process, but it is crucial to do so. Your efforts will usually be rewarded if you are diligent.

What to Do After You Get Disability

Continue to see your doctor regularly and adhere to treatment.

The Social Security Administration (as well as private disability companies as well) reviews disability eligibility periodically. Suppose you go on disability and stop seeing your doctors. In that case, Social Security will assume your health has improved, and you can return to the workplace.

Make your health your new job.

Before you became disabled, your time was filled with work. When you become disabled, there is often a large void. Make it a priority to work on your health as your “new job.” Make sure to follow all the “Lupus Secrets” to take the best care of your lupus. Work at exercising, healthy eating, and making sure that you take advantage of all the health benefits you can find. Research as much as possible about SLE and your condition.

Pursue one or more of your passions.

Even if it is just for 15 minutes a day, working on a hobby, or learning to cook something new.

Consider volunteering at your local hospital, the seniors’ center, or a charitable organization such as your local SLE advocacy group. Giving back to the community can help your self-esteem and improve your quality of life.

Whatever you do, do not sit in front of the TV all day. It is essential to do things to improve your self-esteem.

Think positively.

When you are not working due to disability, you can easily blame yourself and feel depressed. Instead, learn to focus on problem-solving. Try to get as much under your control as possible instead of letting life and your disability control you. If something depresses you or gets you down, write it down as a problem. Then, come up with some solutions and actions that you can do that can solve the problem or decrease its severity. Then, reward yourself when you conquer any situation. Learn to compliment yourself.

Take advantage of the nine-month trial work period.

You can work nine months within five years while receiving full Social Security Disability benefits. This nine-month trial work period (TWP) is an excellent way to test out the job market waters to see if there is a job you can do with your medical condition. These nine months do not have to be consecutive, so you can work a job for a month or two to test it out. If it is not suitable, try another at a later time. During the TWP, you must still be considered to have a disabling impairment. Therefore, it is in your best interest to check with your Social Security office on the rules for the TWP. You also must openly report the work to your Social Security claims representative. Just inform the claims representative that you want to take advantage of the TWP and ensure you know all the rules.

After nine months of working this TWP, if you decide to continue working, you can enter an additional 36-month trial work period (extended eligibility period). You do not receive your Social Security Disability benefits during this time. At any point during this period, if you cannot earn more than the substantial gainful activity limits discussed earlier (including benefits), you can get your total disability benefits for that month during the trial period. This trial period allows you to see if you can return to the workforce without penalties.

During the trial period

During this 36-month trial period, if you find that you cannot keep up with the job, you immediately get your Social Security Disability benefits and payments started back up. Another advantage of the extended period of eligibility and beyond is that your Medicare benefits continue for another 93 months if you were getting Medicare before you entered this period.

After this additional 36-month trial of work, if you are still working, you lose your disability benefits. However, for five additional years after your benefits stop, if your SLE again becomes severe enough to keep you from being able to work, you can fill out a simple Social Security application form requesting a resumption of benefits. Your request will be reviewed as it was during the initial review process, and you will still have to meet the same requirements. However, in this case, your disability benefits, including your check payments, begin the first month following the submission of your request. You do not have to wait for the review to be completed.

The take-home message from this program is that after you become disabled, you can still attempt to enter the workplace. That is to your advantage due to the possibility of obtaining better income and better health insurance. And if you know the timelines and restrictions, there will be no penalties for losing your disability.

Always contact your claims representative to double-check the current rules. Government rules and regulations can change at any time and are complicated.


  1. It is usually to your advantage to keep working instead of going on disability (better income, better health insurance, better self-esteem, and so on).
  2. Follow all the advice in “The Lupus Secrets” and “How to Succeed with Lupus” to control your lupus better. These measures increase your chances of being healthier and better able to work.
  3. If you are having difficulties at work from SLE, see if some adjustments per the Americans with Disabilities Act can be made so that you can keep working.
  4. Notes from your doctor and recommendations from an occupational therapist can help strengthen your work accommodation requests.