Although Ehlers-Danlos Syndrome (鈥淓DS鈥�) can cause severe pain and fatigue, long term disability claims involving EDS are often challenging because symptoms may fluctuate and may not always appear on imaging studies or laboratory testing.
As a result, strong medical documentation and evidence of your functional limitations are often critical to supporting your claim.
Many people with EDS also experience severe fatigue and 鈥渂rain fog,鈥� which can impair concentration, memory, focus, and productivity. Even relatively minor activity may trigger prolonged recovery periods or symptom flares that interfere with attendance and consistent work performance. In some cases, symptoms may worsen as the day progresses, making it difficult to maintain the pace, stamina, and reliability required in a competitive work environment.
The functional impact of EDS can vary depending on your occupation. Physically demanding jobs may become difficult because of chronic pain, instability, and an increased risk of injury. However, even sedentary occupations can present significant challenges. Many office-based jobs require prolonged sitting, continuous keyboard use, sustained concentration, and consistent attendance. These activities may be difficult for individuals experiencing chronic pain, fatigue, dizziness, or cognitive symptoms.
One of the most challenging aspects of EDS is that symptoms often fluctuate. You may have periods when your symptoms are relatively manageable followed by days or weeks of increased pain, fatigue, instability, or cognitive impairment. This unpredictability can make it difficult to maintain a regular work schedule or meet an employer's expectations for reliability and productivity.
Many people with Ehlers-Danlos syndrome also experience co-occurring conditions such as Postural Orthostatic Tachycardia Syndrome (鈥淧OTS鈥�), other forms of dysautonomia, and Mast Cell Activation Syndrome (鈥淢CAS鈥�). Although researchers are still studying the relationship between these conditions, they are frequently diagnosed together. EDS affects the body鈥檚 connective tissues, which provide structural support throughout the body. Some experts believe that connective tissue abnormalities may contribute to autonomic nervous system dysfunction, leading to symptoms associated with POTS and other forms of dysautonomia. Similarly, many people with EDS report symptoms consistent with mast cell disorders, although the precise relationship between EDS and MCAS remains an area of ongoing research.
While each condition can be disabling on its own, the combined effect of these disorders often creates limitations that are far greater than any single diagnosis would suggest.
For example, a person with EDS may already struggle with chronic pain, joint instability, and fatigue. When POTS is also present, symptoms such as dizziness, rapid heart rate, fainting, positional intolerance, and exercise intolerance can further reduce functional capacity. MCAS may add another layer of impairment through allergic-type reactions, gastrointestinal symptoms, headaches, flushing, fatigue, and unpredictable symptom flares. Together, these conditions can make it extremely difficult to maintain a consistent work schedule, sustain concentration, or tolerate the physical demands of even sedentary occupations.
Unfortunately, explaining the cumulative impact of these conditions to your insurer can be challenging. EDS, POTS, and MCAS are all conditions that frequently involve symptoms that are subjective, variable, and not always fully reflected on imaging studies or laboratory testing. As a result, insurers may evaluate each diagnosis individually and fail to appreciate how the combined symptoms affect your ability to function throughout a normal workday and workweek.
In our experience, insurers are often skeptical of claims involving multiple overlapping conditions that primarily manifest through pain, fatigue, dizziness, cognitive difficulties, and other symptoms that cannot always be objectively measured. For this reason, it is often important for your medical records and physician opinions to explain not only each diagnosis individually, but also how the combined effects of these conditions limit your ability to sustain reliable full-time employment.
An Ehlers-Danlos syndrome diagnosis alone is usually not enough to qualify for long term disability benefits. Instead, your insurer will focus on how your symptoms affect your ability to reliably perform the duties of your occupation. In many EDS claims, the central issue is not whether you have the condition, but whether your symptoms prevent you from sustaining full-time work on a consistent basis.
Many individuals with EDS can still perform certain activities intermittently but are unable to maintain the pace, attendance, or physical demands required in a competitive work environment. For example, you may be able to work for short periods of time but struggle with prolonged sitting, typing, commuting, or maintaining concentration throughout a full workday. Unpredictable symptom flares and recovery periods can also make it difficult to sustain reliable attendance and productivity.
In our experience at Riemer Hess, insurers evaluating EDS claims often focus on isolated activities while minimizing the cumulative effect of chronic pain, fatigue, and instability over a normal workweek.
The definition of disability in your policy can play a major role in whether your claim is approved. Many long term disability policies initially use an 鈥�own occupation鈥� standard, meaning you may qualify for benefits if you cannot perform the material duties of your regular occupation. Under this definition, the question is whether your symptoms prevent you from performing your specific job as it is normally performed in the workforce.
After a certain period of time, often 24 months, many policies transition to an 鈥�any occupation鈥� definition of disability. At that point, your insurer may argue that you can still perform other types of work, even if you cannot return to your prior occupation. In EDS claims, insurers frequently contend that claimants can perform sedentary work despite chronic pain, fatigue, positional limitations, cognitive symptoms, or the need for frequent breaks.
These disputes often center on functional capacity. Your insurer will likely review your medical records, daily activities, work history, and physician opinions to determine whether you can sustain full-time work activity on a regular and reliable basis. At Riemer Hess, we have seen how important it can be to thoroughly document limitations involving sitting tolerance, repetitive hand use, concentration, stamina, absenteeism, and symptom flares when pursuing EDS disability benefits.
EDS disability claims are often difficult because many of the most debilitating symptoms associated with the condition are not easily measured through traditional objective testing. Unlike some medical conditions that produce clear imaging abnormalities or laboratory findings, EDS symptoms frequently involve pain, fatigue, joint instability, dizziness, and cognitive difficulties that may not be fully reflected on MRIs, X-rays, or bloodwork. As a result, your insurer may argue that your reported limitations are not adequately supported by objective evidence.
Subjective symptoms such as chronic pain and fatigue are common points of dispute in EDS claims. Even when your symptoms are genuine and well documented, your insurer may characterize them as self-reported or difficult to quantify. In our experience at Riemer Hess, insurers often focus heavily on perceived 鈥渘ormal鈥� examination findings while minimizing the cumulative impact of chronic pain, recurrent subluxations, exhaustion, and reduced functional capacity over time.
Fluctuating symptoms can also create significant challenges. Many people with EDS experience periods where symptoms temporarily improve followed by severe flare-ups that impair their ability to function. Your insurer may attempt to use isolated examples of activity, travel, exercise, or social interaction to argue that you are capable of working full time, even if those activities were limited, infrequent, or followed by substantial recovery periods.
Insurers also frequently argue that individuals with EDS can perform sedentary work. This ignores that many people with EDS struggle with sitting intolerance, positional pain, hand and wrist instability, fatigue, dizziness, or brain fog that interfere with common professional job demands. Our firm often sees disputes arise for our EDS clients when insurers oversimplify the physical and cognitive requirements of sedentary occupations.
Medical records from specialists can play an important role in supporting your claim. Depending on your symptoms, this may include treatment records from rheumatologists, neurologists, pain management physicians, geneticists, cardiologists, gastroenterologists, or other providers involved in your care. Consistent documentation of chronic pain, joint instability, fatigue, dizziness, cognitive symptoms, migraines, or related conditions can help establish the ongoing severity of your limitations.
Physical therapy records may also provide valuable evidence. In many EDS claims, physical therapy documentation reflects reduced strength, instability, impaired mobility, pain with movement, limited endurance, or difficulty tolerating prolonged activity. These records can help demonstrate how your symptoms affect day-to-day functioning over time rather than during a single office visit.
Detailed physician opinions are often among the most important pieces of evidence in an EDS disability claim. Your physician鈥檚 documentation should go beyond an EDS diagnosis, as your insurer will often look for specific functional restrictions and limitations supported by clinical findings and treatment history.
For example, supportive physician statements may address:
Insurers frequently scrutinize whether physician opinions are detailed, internally consistent, and supported by treatment records. They often discount brief checkbox forms or conclusory opinions that do not explain the medical basis for the reported limitations.
Evidence documenting fatigue and cognitive symptoms can also be important, particularly when brain fog, dizziness, or reduced concentration interfere with work performance. Medical records describing impaired focus, slowed processing, memory problems, or exhaustion after minimal activity may help support restrictions involving productivity, pace, reliability, and attendance.
Although there is often no single test that proves disability in an EDS claim, certain forms of objective or functional evidence may still help support your case. Functional capacity evaluations (鈥淔CEs鈥�), for example, are sometimes used to assess your physical abilities and tolerance for work-related activities. These evaluations may measure limitations involving sitting, standing, lifting, carrying, reaching, gripping, endurance, and repetitive movement.
Other potentially helpful evidence may include:
Evidence of failed treatment attempts can also strengthen your claim by showing that your symptoms persist despite appropriate medical care. This may include physical therapy, medications, injections, pain management treatment, bracing, lifestyle modifications, or other conservative and specialized interventions.
Consistency is often one of the most important factors in an EDS disability claim. Your insurer may compare your medical records, physician statements, reported symptoms, daily activities, and work history for perceived inconsistencies. When your evidence consistently reflects ongoing functional limitations over time, it can become more difficult for your insurer to argue that your condition does not prevent you from working.
If your long term disability claim for Ehlers-Danlos syndrome is denied, it is important to take the denial seriously and respond strategically. In many EDS claims, insurers argue that while you may have EDS, your medical evidence does not adequately prove that your symptoms prevent you from performing full-time work on a consistent basis. Understanding the specific reasons for the denial can help you determine what evidence may be needed to strengthen your claim.
Start by carefully reviewing the denial letter. Your insurer is required to explain why your claim was denied and identify the evidence it believes is missing or insufficient. In EDS claims, common denial reasons may include:
It is also important to identify gaps in your medical documentation. For example, your records may describe chronic pain or joint instability without fully addressing how those symptoms affect your ability to sit, type, concentrate, commute, maintain attendance, or sustain activity throughout a full workday. In our experience at Riemer Hess, insurers handling EDS claims often focus heavily on these functional details when evaluating whether someone can continue working.
Strengthening your medical support is often a critical part of the appeal process. Detailed physician opinions explaining your restrictions and limitations may help address your insurer鈥檚 arguments involving sedentary work capacity or inconsistent symptoms. Supporting records from rheumatologists, neurologists, pain management specialists, cardiologists, physical therapists, or other treating providers may also help document the cumulative impact of EDS and related conditions such as POTS, migraines, or dysautonomia.
If your symptoms fluctuate, it can also be important to document the frequency and severity of symptom flares, recovery periods, and post-exertional limitations. Many people with EDS can perform isolated activities occasionally but cannot sustain reliable full-time work over the course of a normal workweek. Your appeal should address these issues directly if your insurer has relied on isolated examples of activity to deny your claim.
You should also pay close attention to appeal deadlines. Under many ERISA disability policies, you may have a limited amount of time to submit an administrative appeal after receiving a denial. Missing a deadline could affect your ability to continue pursuing benefits.
Because EDS claims often involve complex issues relating to subjective symptoms, fluctuating limitations, and functional capacity, early legal guidance may help you identify weaknesses in the record before the appeal process is complete. Our team at Riemer Hess has seen how important it can be to thoroughly document the real-world impact of EDS symptoms, particularly when insurers attempt to minimize limitations that are not fully reflected on imaging studies or laboratory testing.
A long term disability lawyer can help you develop and present evidence showing how Ehlers-Danlos syndrome affects your ability to sustain full-time work. Because EDS claims often involve subjective symptoms, fluctuating limitations, and conditions that may not appear clearly on imaging or laboratory testing, the strength and consistency of the supporting evidence can play a major role in the outcome of your claim.
A lawyer may also help coordinate physician documentation that addresses the specific issues your insurer is evaluating. In our experience at Riemer Hess, insurers frequently focus on whether EDS claimants can perform sedentary work despite ongoing symptoms. As a result, physician opinions that explain limitations involving sitting tolerance, repetitive hand use, concentration, positional changes, absenteeism, or symptom flares may help strengthen the claim record.
In addition, a lawyer can help address common insurer arguments that arise in EDS disability claims. For example, your insurer may argue that your symptoms are inconsistent, unsupported by objective findings, or incompatible with certain daily activities. An experienced long term disability attorney may help place these issues in proper context by presenting evidence regarding fluctuating symptoms, post-exertional limitations, or the cumulative impact of chronic pain and fatigue over the course of a normal workweek.
If your claim has already been denied, a lawyer may assist with the appeal process and, when necessary, litigation. This can include reviewing the denial letter, identifying weaknesses in the record, gathering additional evidence, and responding to medical or vocational opinions relied upon by your insurer.
Our client "Rebecca" was a young professional in a demanding marketing sales role who had spent years pushing through the effects of EDS, chronic pain, fatigue, gastrointestinal issues, and symptoms consistent with POTS and MCAS. Although she had a strong work history and had never received a negative performance review, her health continued to decline. After undergoing surgery related to complications from EDS, it became clear that her challenges extended well beyond surgical recovery and that her underlying conditions were preventing her from sustaining the demands of full-time employment. Rebecca retained Riemer Hess to help her navigate her long term disability claim.
Riemer Hess worked closely with Rebecca and her treating providers to shift the focus of her disability claim away from her temporary post-surgical limitations and toward the cumulative impact of her chronic medical conditions. We gathered evidence from her specialists, recommended she document her ongoing symptoms in a symptom diary, and helped develop medical support explaining why chronic pain, fatigue, cognitive difficulties, and autonomic dysfunction would continue to impair her ability to work even after her surgical recovery was complete. Our team also helped build a record demonstrating how her conditions affected her ability to maintain the pace, concentration, and reliability required by her occupation.
As a result of this comprehensive approach, Rebecca's long term disability claim was approved. Her benefits provided financial stability while she continued pursuing treatment and further evaluation of her complex medical conditions. Grateful for the outcome, Rebecca retained Riemer Hess to protect her ongoing benefits.
Because EDS claims often involve complex medical and legal issues, many claimants have questions about qualifying for benefits and proving the extent of their limitations. Below are answers to some of the most frequently asked questions about EDS and long term disability claims.
Ehlers-Danlos syndrome can be considered disabling if your symptoms prevent you from performing your occupational duties on a reliable, full-time basis. Simply having an EDS diagnosis is usually not enough to qualify for long term disability benefits. Your insurer will typically focus on how your symptoms affect your functional capacity, including your ability to sit, stand, walk, type, concentrate, maintain attendance, and sustain productivity throughout the workday.
Yes. Hypermobile EDS can qualify for long term disability benefits if your symptoms significantly impair your ability to work. Although hypermobile EDS may not always produce definitive imaging or laboratory findings, many individuals experience chronic pain, fatigue, recurrent joint instability, dizziness, cognitive difficulties, and other symptoms that interfere with full-time employment.
Normal imaging or laboratory results do not necessarily mean your symptoms are not disabling. EDS often involves pain, fatigue, joint instability, dizziness, and cognitive symptoms that may not appear clearly on standard testing. Because of this, insurers frequently focus on whether your medical records consistently document functional limitations and ongoing treatment rather than relying solely on imaging findings.
Yes. POTS and other forms of dysautonomia commonly occur alongside EDS and may strengthen your disability claim when properly documented. Symptoms such as dizziness, rapid heart rate, fainting, fatigue, positional intolerance, and difficulty standing for prolonged periods can significantly affect your ability to work consistently. Medical documentation and autonomic testing may help support these limitations.
Not always, but a functional capacity evaluation (鈥淔CE鈥�) may help support your claim in some cases. FCEs are designed to evaluate your physical tolerances and functional limitations involving activities such as sitting, standing, lifting, carrying, reaching, and repetitive movement. In EDS claims, these evaluations may help demonstrate limitations that are not fully reflected through imaging or laboratory testing alone.
Successfully pursuing an EDS long term disability claim often depends on demonstrating how your symptoms affect your ability to function consistently in a work setting. Because insurers frequently challenge these claims based on fluctuating symptoms or limited objective findings, detailed medical and functional evidence can play a critical role in supporting your eligibility for benefits.