Social Security Disability and SSI for Post-COVID Syndrome

Whether COVID long haulers will be able to get disability benefits for chronic symptoms depends on the severity of their symptoms and limitations and how long they last.

Long COVID, or long-haul COVID, is a term being used to describe those who have symptoms months after being infected with the coronavirus. Researchers think that 10% to 30% of patients who had COVID infections may suffer from long COVID, or "post-COVID syndrome," whether their initial illness was serious or not. Some researchers define chronic COVID-19 as extending beyond 12 weeks, but the symptoms may last many months.

Long COVID Symptoms

Symptoms can vary widely, but many "long-haulers" report shortness of breath, extreme fatigue, fast heart rate, fainting or dizziness on standing, or neurocognitive difficulties (often called "brain fog"). Some long-haulers are unable to work because of the severity of their symptoms and limitations and have applied for disability benefits. Social Security disability insurance, however, requires that a claimant be unable to work for 12 months, and it is unclear how long post-COVID symptoms may last, given that not many people contracted COVID-19 more than 12 months ago. In addition, there have been anecdotal reports of people recovering from post-acute COVID syndrome (PACS) after they get COVID vaccinations. (The acronym PASC, for post-acute sequelae of COVID-19, is also being used to refer to this syndrome.)

Guidance from Social Security on Post-COVID Syndrome

Social Security has not released guidance on how the agency will determine whether someone unable to work due to post-COVID syndrome is eligible for benefits, but the agency says it is studying the issue and expects to use its current listings and rules to analyze the condition. In the past, when new syndromes became known, it has taken Social Security years to release guidance, and then it is often in the form of "policy interpretation rulings" rather than official medical "listings." For example, Social Security released guidance on chronic fatigue syndrome in its ruling SSR 14-1p in 2014, but it still has not added a listing for the condition. In some cases, however, SSA will create a listing for a syndrome after studying it in depth; for example, after years of relying on a ruling for guidance, Social Security created a listing for post-polio syndrome, a post-viral syndrome to which many studying long-term COVID have drawn parallels.

Disability Determination for Post-COVID Syndrome

After confirming that a claimant is not doing a significant amount of work, Social Security's next step in analyzing an application is determining if the claimant has a "medically determinable impairment," which must be established by "medical signs" and laboratory findings. In other words, a doctor must have determined that a patient has a medical condition using clinical or laboratory tests, not just a patient's subjective complaints.

Next, Social Security determines if the condition is so severe that is of "listing level" severity. The agency will compare a claimant's symptoms and limitations to the criteria of any relevant medical listings to see if the claimants' limitations rise to the same level of severity.

Physical symptoms. In the case of post-COVID syndrome, there are various listings that the agency could look at in this step of the assessment, depending on the claimant's symptoms. Many long COVID sufferers have physical symptoms that fall into four categories:

  • fatigue and endurance issues, very similar to what happens in myalgic encephalomyelitis (ME)—more commonly known as chronic fatigue syndrome (CFS). ME/CFS can be triggered by viral infections. (See our article on CFS for how the SSA determines eligibility.)
  • malfunctioning of the autonomic nervous system, as in postural orthostatic tachycardia syndrome (POTS). POTS can cause fainting and dizziness after standing or sitting up. (See our article on POTS for how the SSA determines eligibility.)
  • long-term respiratory difficulties, similar to those with scar tissue from pneumonia or acute respiratory distress syndrome (ARDS). (See our articles on pneumonia, COPD, and sleep apnea for how the SSA determines eligibility.)
  • cardiovascular problems from lasting damage to the heart muscle (cardiomyopathy), potentially causing congestive heart failure (CHF), or myocarditis leading to arrhythmias or chronic pulmonary hypertension. (See our articles on CHF and arrhythmias for how the SSA determines eligibility.)

Cognitive and mental symptoms. The majority of COVID long-haulers report problems with memory and brain fog (sometimes in addition to headaches or loss of the sense of smell). Doctors think at least some of these cases are caused by encephalitis (inflammation of the brain due to viral infection). The cognitive problems people experience are similar to those that people have reported after encephalitis stemming from Lyme disease, another illness with a post-viral syndrome.

Social Security could use the listing for neurocognitive disorders (12.02) to evaluate the applications of long-COVID sufferers experiencing cognitive difficulties. Those who have both physical and mental problems could try to "equal" the listing for traumatic brain injuries (more on equaling a listing below).

Long-haulers who were ventilated or hospitalized with severe COVID may suffer from what's known as post-intensive care syndrome (PICS). Patients with PICS often suffer from long-term muscle weakness, fatigue, cognitive deficits, and/or mental health issues like anxiety or depression.

Equaling a Listing

Even if your medical condition doesn't have an official disability listing, Social Security might find that your symptoms make you just as disabled as someone who meets a listing. For example, if you don't have the exact lung function test results you need to meet the listing for chronic respiratory disorders (the listing used for COPD), but you have severe limitations from lung damage, Social Security could find that your condition "equals" the listing.

To get disability based on equaling a listing, you usually need a lawyer to propose a theory to the Social Security Administration as to how and why you equal a specific listing. And your doctor will need to provide supporting medical evidence to back up the theory. In the case of post-COVID syndrome, you'll likely need to include evidence of your past coronavirus infection. This can be difficult for those who contracted the illness early in the pandemic and who don't have evidence of a positive COVID test, doctor visit, or hospitalization. It's unclear whether having a positive antibody test will be accepted as evidence, especially after vaccination.

Next Steps

You'll need to show Social Security three main things to get disability benefits for long COVID:

  • a diagnosis, with signs of your illness and a record of your symptoms
  • evidence of your limitations and how they affect your ability to work, and
  • documentation that your inability to work has lasted, or will likely last, 12 months.

Keep going to your doctor or specialists to document your symptoms and how your limitations keep you from leading a normal life or being able to work. Get a diagnosis, not just of post-COVID syndrome, but of the underlying mechanisms that are making you sick. For instance, if you're having respiratory issues, get referred to a pulmonologist who can give you lung function tests. If you're fainting after prolonged sitting or standing, or you have chest pain, get a referral to a cardiologist. If you are exhausted after the least bit of activity (known as "post-exertional malaise"), you should probably see a rheumatologist. If you're having cognitive issues, be sure to get a neurological evaluation before applying for disability benefits.

It's difficult to figure out the tests you need or the specialists you should see without being a doctor yourself, so your first step should be to see your primary care doctor, who can give you referrals to the appropriate specialists depending on your symptoms.

In the meantime, if you have a short-term disability policy through your work, consider filing for short-term disability insurance benefits; if not, check if your state is one of the few that has a state temporary disability program.

Updated March 24, 2021

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