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 to contribute to society, have a feeling of good self-worth, 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 go through 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 navigate the system and better get what you are entitled to. If you read and do everything in this chapter, you will increase your chances of receiving disability benefits.

    Even if you are not planning to go on disability, this chapter contains valuable information on maximizing the quality of your medical records. Therefore, if you ever decide to apply for disability, it will be a smoother process. It also gives advice on special accommodations you may have the right to request to help make it easier to do your job in light of your SLE.

    Chronic Disease and the Workplace

    Continuing to work and deal with a chronic disorder like SLE can be difficult. In addition to the usual stress of working, 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 nightly sleep. You must make your health a priority because if your SLE gets worse, it could potentially cause you not to be able to work, which can lead to the loss of income and the loss of good healthcare. 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 is a federal law that prohibits employers from discriminating against people with disabilities. It is intended to help people who want to continue working but may have workplace difficulties due to illness. It also requires employers to make “reasonable accommodations” for people with disabilities unless those accommodations would cause “undue hardship.” Some examples of types of requests that can be made of your employer are listed below:

    Potential Requests of Employers to Ensure a Better Work Environment for SLE Patients

    Cognitive Impairment, Memory Problems:

    -Ask for written job instructions, when possible, instead of verbal ones.

    -Ask that your job assignments be prioritized.

    -Ask for flexible work hours.

    -Allow periodic rest periods to reorient.

    -Ask for memory helps, such as schedulers or organizers.

    -Minimize distractions.

    -Allow for a self-paced workload.

    -Reduce job stress.

    -Provide more structure.

    Fatigue/Weakness:

    -Reduce or eliminate physical exertion and workplace stress.

    -Schedule periodic rest breaks from the workstation.

    -Allow a flexible work schedule and use of leave time.

    -Allow work from home (telecommuting).

    -Implement an ergonomic workstation design.

    -Provide a scooter or mobility aid if required to travel long distances.

    Motor Impairments (due to arthritis, myositis, or nerve involvement):

    -Use an ergonomic workstation design.

    -Provide alternative computer and telephone access.

    -Provide arm supports.

    -Provide writing and gripping aids.

    -Provide speech recognition software for computer work.

    -Provide a page-turner and a book holder.

    -Provide a note-taker.

    -Modify the worksite to make it accessible.

    -Provide 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).

    -Provide an accessible entrance.

    -Install automatic door openers.

    -Provide an accessible restroom and break room.

    -Provide an accessible travel route to other work areas used by the employee.

    -Adjust desk height for wheelchair or scooter if used.

    -Make sure materials and equipment are within range.

    -Move the workstation close to other work areas, office equipment, and break rooms.

    – Allow healthy shoes, such as tennis shoes (wide-toe box, suitable arch supports, cushioned soles, no heels)

    Photosensitivity (applies to everyone with SLE):

    -Minimize outdoor activities between 10:00 AM and 4:00 PM.

    -Avoid reflective surfaces outside, such as sand, snow, and concrete.

    -Provide clothing to block UV rays if required to be outdoors.

    -Provide “waterproof” sun-protective agents such as sunblock and sunscreens.

    -Install LED bulbs instead of fluorescent, incandescent, or halogen bulbs.

    -Install adjustable window blinds and UV light filters.

    Breathing Difficulties (such as heart or lung involvement):

    -Provide adequate ventilation.

    -Keep the work environment free from dust, smoke, odor, and fumes.

    -Implement a “fragrance-free” workplace and a “smoke-free” building policy.

    -Avoid temperature extremes.

    -Allow a fan-air-conditioner or heater at the workstation.

    -Redirect air conditioning and heating vents.

    -Provide adequate exhaust systems to remove fumes from office machines.

    -Allow an individual to wear a respirator mask.

    -Allow work from home.

    Raynaud’s Phenomenon:

    -Modify worksite temperature.

    -Modify dress code (allowing layers of clothes, long sleeves, and a hat while inside).

    -Allow a heater at the workstation.

    -Allow work from home during cold weather.

    -Redirect air-conditioning vents.

    -Provide an office with separate temperature control.

    Dryness problems from Sjögren’s disease:

    -Provide a humidifier at the workstation.

    If you have difficulty keeping up with your work, look at the list above. Identify how your SLE affects you (look at the main headings in bold, such as “Raynaud’s.”). Then go through the list to see which job accommodations could help you. Then ask your doctor to write you a note asking for these accommodations. A doctor’s note saying that it is medically necessary for your medical condition often is enough.

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

    The language used in the Act itself can be problematic. Knowing what is considered “reasonable accommodations” and “undue hardship” can help. You can read more about these on the US Equal Employment Opportunity Commission’s website.

    There is a point where requests to an employer go beyond what is reasonable, and many court cases have tried to answer those questions. You can get more information and recommendations on how the Americans with Disabilities Act may apply to you. 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.

    Choosing the Right Job

    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 who had fantastic, understanding employers and supervisors who did everything they could to ensure they could continue working. We have also seen others with milder SLE who found their workplace environments intolerable.

    Employing assistance using 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 many things are out of your control. Sometimes it is better to find a different position or workplace instead of dealing with an unwilling employer who makes work too stressful.

    In addition, it is essential to look at the benefits of a job. Good health insurance is critical when dealing with a complex disorder like SLE. Planning for adequate retirement benefits is also paramount because you never know what the future will hold. You should think well ahead of time about the importance of saving up for retirement and having a job that has a good retirement plan. Sometimes it is wiser to choose a career with excellent benefits than a job that pays more but has worse benefits. Along these same lines, choosing a workplace with less stress and hourly demands can be better than a high-stress job that pays more. You can find many online articles advising on good jobs for people with chronic illnesses, pain, and other problems like fatigue.

    Many businesses and jobs offer their employees ongoing, additional job training. It is often best 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 a better job,

    Of course, leaving and finding a job suitable for a particular medical condition is not easy. Not everyone has the luxury of having the perfect job with an employer and supervisor. If you cannot change careers, you can do other things to help your situation.

    Your medical condition does not need to be made public. However, if you feel it is best to educate your supervisor and co-workers, you can give them educational pamphlets to learn more about your condition. However, be careful about doing this. Most people are too busy to spend a lot of time reading about something that does not pertain to them. It is better to do this in small steps, such as providing a short, easy-to-read pamphlet from your doctor’s office.

    These issues are even more difficult with a disorder such as SLE, where most people do not appear to be ill. The person can look perfectly normal, and 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 accept 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) is a law designed to allow employees to juggle their work and family responsibilities by permitting them to take up to twelve weeks of unpaid leave per year for various reasons, including medical leave “because of 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 to treat it, and having to see your doctor regularly satisfy the medical criteria for FMLA. SLE patients should have their doctors fill out FMLA paperwork to protect themselves. This can cover required absences from work when they must see their doctors and fulfill other requirements for their healthcare. If you become ill from SLE and require additional time off, this would need to be added to your FMLA paperwork. FMLA paperwork can usually be obtained from your employer’s personnel department or the Department of Labor.

    Disability

    The decision to go on disability is challenging. Some SLE patients, unfortunately, have severe enough problems that they cannot do their jobs anymore.  Getting disability is a complex, long, and often painful process. People who must stop working due to the severity of their SLE face many obstacles. Although the difficulties and stressors that their jobs cause may be gone, these are replaced with other problems.

                Before considering disability, consider the numerous downsides of disability that many people fail to consider.

    Loss of adequate income is a huge problem. People who stop working and end up relying on disability checks usually end up making much less money. In addition to worrying about and caring for their medical health, they are also faced with the difficulties of making ends meet financially and learning how to live a more frugal lifestyle. The amount of money people get from disability is usually barely enough to survive. In 2023, the maximum monthly payment for Supplemental Security Income (SSI) for disability was only $914 ($1371 for couples).

    Our work often affects how we feel about ourselves (called self-esteem). According to the Bureau of Labor Statistics, in 2021, full-time working Americans spent an average of 8.5 hours per day performing their work and doing work-related activities. Yet, we sleep 8.95 hours dailyand spend the other 6.55 hours doing other activities. We spend more time around those we work with than we do with our closest loved ones. What we do for a living becomes part of our identity. While working, we contribute to society, which adds to our self-esteem.

    When the work environment is removed, it creates a huge vacuum. If it is not replaced with other essential activities, it can quickly cause problems related to self-esteem issues, including depression and feelings of isolation.

    Many disabled people find that friends and family treat them differently. Along with the loss of finances and self-esteem, disabled people often find that their circle of friends changes or disappears. They may also not see family as frequently. A problem of isolation may set in. This can result in a vicious cycle of isolation from society.

    An enormous potential problem for the disabled is the loss of insurance. The number one cause of not doing well with SLE is not being compliant with all aspects of treatment, including taking the medications, using sunscreen daily, not smoking, 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 what can be afforded when you go on disability. When you are disabled, you must wait twenty-four months before getting Medicare if you are on SSDI—potentially more than two years of not having any healthcare insurance. For someone who has severe enough SLE to go on disability, this could be catastrophic. If someone gets Medicaid, the medical care available is usually inferior to that open to the person with private insurance.

    What to do if you decide to go on disability

    When you become disabled and cannot work, you should apply for disability immediately. The process can take a long time, and it is in your best interest to do so quickly. If you need to apply for disability, read and follow the instructions in the remainder of this online chapter from The Lupus Encyclopedia to increase your chances of getting the disability you deserve. However, if there is any chance that you can keep working, then do everything you can to do so, especially if you have good health insurance.

    Even if you cannot perform your job, it is better to try to find a job that you can do. For example, consider the possibility of getting a job with less stress and less physically demanding work. There are even companies that offer healthcare insurance to part-time workers. 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. Other part-time jobs, such as a teacher’s aide, may also offer benefits such as healthcare insurance in some areas.

    Private Disability Insurance

    If you have private disability insurance or have it available through your workplace, you should apply for this in addition to Social Security Disability. Every private disability insurance plan is different regarding the definition of disability and the process for getting the disability. However, in general, the requirements for disability tend to be more difficult with Social Security than for private disability in many cases[DTM1] [CL2] . Follow all the steps for Social Security Disability outlined below. It should also make it easier for you to qualify for your private disability.

    Social Security Disability

    Understanding how the Social Security Disability process works can make it easier to fulfill all the requirements of applying for disability and help you determine whether you can get Social Security Disability. Although this is a federally-funded program, the decision as to whether you are disabled is made at a state-level Disability Determination Services office and through your local Social Security office. However, all states must follow the same federal rules and guidelines.

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

    If you have an easily noted disability (like paralysis, tremors, speech difficulties, and such), applying in person at your local Social Security field office is a good idea. The representative can then notice your challenges. They can also make sure that you fill out all the forms correctly. Just make sure to go in prepared with all the information recommended below.

    After the initial application, the next step is for the claims representative to determine if you meet administrative requirements. These administrative requirements look at your work history, your financial eligibility, confirm that you are a US citizen, and other nonmedical eligibility requirements.

    If you meet the initial administration requirements, the claim representative sends your application to Disability Determination Services (DDS). They make the medical decision as to whether you are medically disabled. The disability examiner will review your application and 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.

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

    After receiving this information, the disability examiner summarizes these findings and gives them to a medical consultant. The medical consultant can be a medical doctor (MD or DO) or a licensed clinical psychologist (Ph.D. or PsyD). The medical consultant reviews the information and the disability examiner’s summary and recommendations to determine whether you have physical and/or medical limitations in working.

    The medical consultant gives this assessment back to the disability examiner, who will then decide whether you can do any job based on this determination.

    The entire process takes an average of around two years. In clear-cut cases of disability, it may take a month or two, while in others, it may take many months. The length of time depends on your case’s complexity, how thorough your doctor’s evaluations are, and how quickly each source sends back the requested materials.

    There is a high fail rate for acceptance of Social Security Disability. Nationwide in 2020, only 45% of all applications were eventually approved for disability.

    Disability acceptance rates vary widely by state. The lowest success rate in 2020 was in Oklahoma, with only 33% being determined as disabled, while 69% of Kansas residents met disability requirements.

    After a denial of disability, most people go through appeals for reconsideration. These numbers are even lower, with only 14% of people nationwide getting disability on appeals. If the reconsideration is denied, then you will get to a hearing. About 50% of all cases that go to a hearing are approved for disability.

    Obtaining a successful disability determination depends a lot upon your medical documentation. Even if you are clearly disabled, but your doctor does not keep good records, you may not have a good case to convince Social Security. 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.

    Requirements and Definition of Social Security Disability. Determining disability through Social Security follows a series of steps, beginning at step 1 below and proceeding to the last step. You must meet the requirement of an earlier step before moving to the next step. If your application claim does not meet the conditions of steps 1, 2, or 3, then your claim does not go any farther, and it is denied. It is also possible (and should occur for people who are disabled from SLE) to be approved at step 4 and not have to go any farther in the process.

    1. You must have enough work credits. People get “work credits” throughout life from the Social Security system. The number of work credits is based on income and the number of hours worked. The amount of work credits required to get Social Security disability varies by age, with less needed by the young (such as those less than 24 years old). However, those aged sixty-two and older require the most. Most people who work full-time will get four work credits per year.

    Only six work credits (around 1 ½ years of full-time work) are required if you are less than 24 years old, while forty work credits (about 10 years of full-time work) are needed if you are sixty-two or older. You also must have earned at least twenty credits in the 10 years before you became disabled. You can think of this requirement as having worked full-time and paid FICA (Federal Insurance Contributions Act) taxes for five of the previous ten years before your disability. (FICA taxes are the taxes taken out of your paycheck for Social Security and Medicare). However, if you are 31 years old or younger, the work credit requirements are less because it is more challenging to build up work credits at an early age.

    There are exceptions to these rules, including the blind, widows, and widowers, which is beyond the scope of this online chapter.

    2. You cannot be working a substantial, gainful job. If you are working “substantial, gainful activity” (SGA), then 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 “substantial, gainful” work is the day you can begin filing for Social Security Disability. However, you cannot be considered disabled if you start working again above the SGA income amount.

    3. Your physical or mental condition must be severe. This does not mean that the disease is potentially severe. It means that it is severe enough in your case to prevent you from performing basic work activities for at least 12 months.

    For example, although SLE can potentially 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 your SLE is considered a disabling disorder.

    4. 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 recognized “listed conditions.” The actual listing of SLE by the Social Security Administration is as follows:

    SLE (14.02).

    a. 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, there is an array of circulating serum auto-antibodies and pro- and anti-coagulant proteins that may occur in a highly variable pattern.

    b. Documentation of SLE. Generally, but not always, the medical evidence will show that your SLE satisfies the criteria in the current “Criteria for the Classification of SLE” by the American College of Rheumatology found in the most recent edition of the Primer on the Rheumatic Diseases published by the Arthritis Foundation.

    Before being determined 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 the requirements of disability without any further steps. However, this requirement 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.

     Suppose you satisfy the first three disability requirements, and your doctor documented your diagnosis and severity of SLE using the above criteria in their medical notes. In that case, you may be qualified for Social Security Disability without going through the following steps. That is why you should ask your doctor to ensure this is done in the notes.

    5. You must be unable to do work you did during the previous fifteen years. If the disability examiner considers that you have some medical and/or mental impairments but do not automatically qualify for one of the listed medical requirements in step 4 above, 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 that you are physically and mentally able to 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 those jobs with your medical condition impairments, you will likely not qualify for Social Security Disability. Suppose you recently had a high-paying job that you can no longer do, but in the past, you had a sedentary low-paying job. You may be ineligible for disability since you can do the latter position with your SLE.

    6. You must be unable to do any work in the American economy. If you cannot do the jobs you previously 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 keep in mind your age, education, past work experience, and potential when considering your ability to learn a new vocation.

    Suppose you have been a carpenter for fifteen years and now have back problems that interfere with your carpentry skills. 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, rendering you unable to manage patients, yet you can do consultant work for $1,500 a month, you would be ineligible for Social Security Disability. The pay reduction would make no difference.

    Increasing your Chances of Getting Social Security Disability

    You can do things to ensure the best possibility of getting Social Security Disability the first time around. If you do what we suggest here and satisfy the requirements of disability as outlined in the previous section, you will improve your chances.

    1. Apply early. As soon as you cannot work “substantial, gainful” employment, as discussed in step 2 above, and you are expected not to be able to work for the next year due to your SLE, then you should apply immediately. If you are found disabled by Social Security, you will not be paid disability benefits until you have been disabled for six months, beginning the first full month after you became disabled. It can take 2 years or longer to complete the entire disability 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 as well. 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 workplace.

    3. Hire a lawyer who specializes in Social Security Disability right away. It can increase your chances of having a successful outcome. The fees for the lawyer are the same everywhere since the government sets these rates. The lawyer would get 25% of your back benefits or $7200 (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.

    4. Gather all necessary documents as soon as possible. These include:

                -Social Security number (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 fifteen 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; or a mental status exam if a psychiatrist note)

    -Diagnoses (along with how your SLE meets the American College of Rheumatology’s classification criteria)

    -Treatments prescribed with responses and prognosis (include previous treatments)

    -A statement as to what limitations you have at work and away from work

    -A statement saying that the limitations in your ability to work are expected to last a year or longer

    5. 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 make a notation in your progress note (the written note that the doctor makes of each visit) of your physical and mental limitations. For example, if you have difficulty doing tasks such as working, dressing, or doing household chores, make sure to ask that this be included in the note. However, do not 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, there are things that your doctor can include in your progress notes that can increase the chances of disability approval. Ask your doctor to include a statement in the 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. Ask that it be noted on each progress note after that.

    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. You want it to state 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.”

    If these things (physical and mental limitations, SLE is “severe,” the condition 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, do not ask your doctor if you are disabled. Your doctor has no say as to whether you are disabled or not. 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.

    6. 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 go to a free clinic for basic care. Make sure to remind the clinic doctor to list SLE as a diagnosis (how it was diagnosed) and keep copies of your labs and notes from the free clinic for your personal records. Ask the doctor at the free medical clinic to include in your notes the same items discussed in point five above (your functional limitations that will last at least a year due to severe SLE and how your SLE was diagnosed). Very few doctors know Social Security Disability requirements, so it can be helpful for you to make this request specifically.

    7. 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 (e.g., panic disorder), that can limit their work. If this applies to you, you should regularly see a psychiatrist or psychologist. Psychiatrists are the experts when using medications to treat these disorders. SLE patients typically do better if they see a psychiatrist to help with their treatment. In addition, it makes a dramatic difference in increasing your chances of successfully getting disability.

    Be honest with your psychiatrist or psychologist. I (Don Thomas, MD) am frequently amazed at how patients will tell me that their psychiatrists told them how well they are doing while crying uncontrollably in my exam room due to their depression. I think this is because they have a longer, more comfortable relationship with me than their psychiatrists. Or they may fear appearing “crazy” to their psychiatrists. One of my SLE patients told me how she stayed in her house for an entire month due to her severe depression, yet when she saw her psychiatrist, she told him everything was fine. Your psychiatrist cannot help with your medical condition or disability unless you are sincere.

    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 very well. Otherwise, you will most likely be required to see a psychiatrist chosen by Social Security for an independent examination where there is an increased likelihood of something being missed and potentially not getting approved for disability.

    8. Make a special disability appointment with your doctor. Social Security requires certain items to be commented on specifically for people eligible for Social Security Disability. Most doctors do not know these items because most lack disability benefits training.

    a. Arrange a special visit to your doctor solely to ensure that the proper remarks are placed in your records. Do not expect your doctor to do this during one of your routine medical visits. If your SLE is severe enough to require disability, your visits with your doctor will usually focus on your medical care (history, physical examination, lab results, adjustments to your therapy, etc.). Asking that the visit include a disability evaluation may be too much for your doctor to manage. Instead, schedule an extra appointment with your doctor. Let your doctor know ahead of time that it is solely for the benefit of applying for disability. Of course, if there is a pressing issue about your health, your doctor will also include that at the visit, but do not expect non-urgent matters to be addressed.

    Go to this visit with a list of what needs to be included in the note (as mentioned above). Give your doctor this concise list and ask that it 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 bills, doing housework, driving, taking public transportation, completing tasks promptly, forgetting duties at work, work tasks causing increased pain, or your depression causing repetitive conflicts with co-workers and supervisors. Make sure to give specific examples, but do not overburden your doctor with multiple pages of examples.

    Realize that this is asking for a lot because this is much more than is included in the typical progress note for doctor visits. This is one reason that you should plan to request that only disability be addressed during this visit (including not asking for medication refills or anything else).

    Indeed, you may very well be strapped for cash during such a tough time. Social Security will usually pay for a disability examination from your doctor because it saves them the expense 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 of them tells you there are insufficient funds, ask to talk to their supervisor to make the request because that person usually can do so. Press your case that if they do this, it will save them time and money from not needing an additional independent medical evaluation.

    b. In addition to bringing the list of things you want to be included in the progress note, bring a blank copy of a Medical Source Statement (MSS) to the disability appointment with your doctor. When seeing your psychiatrist for depression or other psychiatric diagnoses, take a mental Medical Source Statement. These forms list 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 not comfortable filling out this form, and few have received training in how to do it. One way you can help is to fill out a sample form and give it to your doctor. Explain to your doctor that you filled out a form 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 blank form as possible (such as your name, address, and personal information). The less information your doctor must put on the form, the more willing they are to fill it out.

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

    Do not exaggerate when you fill out your copy of the MSS form. Doctors are constantly sorting through the problems of patients who exaggerate their symptoms in disability requests. It can become quite frustrating.

    One example to illustrate this point is where the form asks about the frequency of being able to perform certain activities. One of these activities is “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 amount in every category, but this can be tricky and appears exaggerated. The definition of “occasionally” is “from very little up to one-third of the time and would generally total no more than about 2 hours of an 8-hour workday.” Most people, even those severely disabled, can “reach down to waist level” at least frequently. 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.”

    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 as far as “what you want to do and do not want to do,” but rather, how your SLE “realistically prevents or allows you to do these things.”

    9. Make a special appointment with your psychiatrist for the disability application. The recommendations above for seeing your rheumatologist also apply to your psychiatrist. If this applies to you, then it is in your best interest to do this instead of relying on an evaluation by someone chosen by Social Security. However, when you take in a copy of the mental MSS to your psychiatrist visit, make sure that it is the one specifically labeled as “mental.” When discussing your functional mental limitations with your psychiatrist, make sure to include things such as:

    –  “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 continuously 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 will stay in the house for long lengths of time avoiding contact with others.” These are just examples, but your mood, concentration, memory, or difficulties with keeping up the pace at work or home can be important in terms of your mental function.

    10. 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 like 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. Our recommendation of always being honest with your doctor comes into play. If you are not taking your medicine because you cannot afford it, you should inform your doctor and have it documented. First, your doctor may be able to help you out or give you advice on how to get around this. Furthermore, you can ask your doctor to document this difficulty in your medical record to support why you are not taking your medicine.

    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.

    11. Keep copies of your medical records. This is an excellent habit to get into. Every time 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, 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.

    12. 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 because they manage many cases simultaneously. The same goes for your doctor. Make sure 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.

    13. Be organized. Keeping copies of your medical records and forms can become a lot to keep track of. Have a system to keep everything organized. For example, have a file or section of a folder to file your labs in chronological order. The same goes for doctor’s notes, x-rays, hospital notes, and the like. The more organized you are, the easier it is to find what you need.

    14. Be cordial and polite with 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 priority 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.

    15. 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.

    16. Keep in contact with Social Security on the status of your claim. Your claim will be in two separate places, as explained at the beginning of this chapter. Initially, it goes to the claims representative at your local Social Security office. It then goes to the disability examiner at your state’s Disability Determination Services, then returns 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 receiving additional questionnaires through the mail from the disability examiner. The disability examiner usually sends these out at the same time. Fill your questionnaires out entirely and send them back immediately.

    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?”

    17. Keep a disability journal. While you are disabled, keep a journal of what difficulties you have in your daily life due to your medical problems. Be thorough. Include when you fill out certain forms for your disability claim, when you talk to anyone on the phone at Social Security, what you spoke of, whom you talked to, etc. 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. Your efforts will usually be rewarded if you are diligent and compulsive in going through these steps.

    What to Do After You Get Disability

    Continue to see your doctor regularly and be adherent to treatment. The Social Security Administration (and 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 that your health has improved and that 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.” Work at exercising, eating healthy, 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, always trying to improve your physical and mental health. 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.

    Pursue one or more of your passions. Even if it is just for fifteen minutes a day, work on a hobby, volunteer, or learn to cook something new. 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 positive. 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 the severity of the problem. Then reward yourself when you conquer any situation. Learn to praise yourself and 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 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, and if it does not work out, try another at another time. You also still must be considered as having a disabling impairment during this period. Therefore, it is in your best interest to check with your Social Security office on the rules for this nine-month “trial work period” (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 you want to continue working, you can enter an additional thirty-six-month trial work period (extended period of eligibility). 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 get back into the workforce without penalties.

    During this thirty-six-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 during the “extended period of eligibility” and beyond is that your Medicare benefits continue for another ninety-three months if you were getting Medicare before you entered this period.

    After this additional thirty-six-month trial of work, if you are still working, then you do lose your disability benefits. However, for five additional years after your benefits stop, if your SLE becomes severe again, keeping 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 like the initial review process, and you must still meet the same requirements. However, a good benefit is that your disability benefits, including your check payments, begin the first of the 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 is that after you become disabled, you can still attempt to enter the workplace (which is to your benefit due to the possibilities of better income and better health insurance) without penalties for losing your disability if you know the timelines and restrictions.

    Always contact your claims representative to double-check the current rules.

    KEY POINTS TO REMEMBER
    1. It is usually to your advantage to keep working instead of going on disability (better income, better health insurance, better self-esteem, etc.). 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. 2. If you are having difficulties at work from SLE, check and see if some adjustments are possible to continue working as per the Americans with Disabilities Act. 3. Notes from your doctor and recommendations from an occupational therapist can help strengthen your work accommodation requests. 4. Organizations that can give you advice on appropriate work accommodations include the Job Accommodation Network, the Patient Advocate Foundation, Hire Disability Solutions, and the US Office of Disability Employment Policy. 5. If your SLE is severe and prevents you from doing your current job and any job you have held during the previous fifteen years, and this disabling condition is expected to last at least one year, apply for Social Security immediately. 6. Get the help of a lawyer specializing in Social Security Disability, such as Sharon Christie and members of the National Organization of Social Security Claimants’ Representatives. 7. Follow the guidelines in this chapter to ensure that your disability application has the best chance of approval the first time it is submitted. 8. Good luck, and remember, you can take steps to increase your chances of getting the benefits you need.