Filing for Disability with Ehlers-Danlos Syndrome: What You Need to Know

Your step-by-step guide to understanding Social Security Disability Insurance (SSDI) and Supplemental Security Income (SSI) in the United States.

Living with EDS can mean facing unpredictable symptoms, debilitating pain, and a loss of reliable function. If your condition makes it impossible to maintain full-time employment, you may qualify for disability benefits through the Social Security Administration (SSA).

But the process isn’t easy. Here’s what to expect—and how to improve your chances.

What Is Disability According to the SSA?

To qualify for SSDI or SSI, you must meet the SSA’s definition of disability:

“The inability to engage in any substantial gainful activity (SGA) due to a medically determinable physical or mental impairment that has lasted or is expected to last at least 12 continuous months or result in death.”

EDS is not explicitly listed in the SSA’s “Blue Book” of impairments, but you can still qualify by proving that your symptoms meet equivalent functional limitations under other listings, such as:

Musculoskeletal Disorders
Neurological Conditions (POTS, chronic migraines)
Cardiovascular Issues
Autoimmune/Immune disorders (if MCAS overlaps)
Mental health impacts (anxiety, PTSD, depression)

Types of Disability Benefits

SSDI (Social Security Disability Insurance)

For those who have worked and paid into Social Security for 5 out of the last 10 years
Based on your work history and earnings
Includes Medicare eligibility after 24 months

SSI (Supplemental Security Income)

For low-income individuals with limited resources and no work history
Income and asset limits apply
Includes Medicaid eligibility

You may qualify for both SSDI and SSI depending on your situation.

Key Requirements to Apply

✔ Medically Determinable Impairment

You must have documented diagnosis and symptoms from licensed healthcare providers. For EDS, this includes:

Official diagnosis (ideally from a geneticist, rheumatologist, or specialist)
Clinical evidence of joint instability, pain, fatigue, organ dysfunction
Co-occurring diagnoses (POTS, MCAS, fibromyalgia, etc.)

✔ Functional Limitations

You need to prove how your condition prevents you from working. This can include:

Inability to sit or stand for long periods
Needing frequent unscheduled breaks
Pain interfering with concentration (cognitive dysfunction or “brain fog”)
Missed work due to flares, ER visits, or doctor’s appointments

Functional reports from physical therapists, occupational therapists, and your own statements matter.

Steps to Apply for Disability

1. Gather Your Medical Records

At least 12 months of detailed documentation
Include diagnoses, symptoms, test results (e.g., tilt table for POTS, MRIs)
Get letters from doctors explaining your limitations in daily function

2. Apply Online or In Person

Online: https://www.ssa.gov/applyfordisability/
Or call SSA at 1-800-772-1213 to start the process

3. Complete the Function Report

This is a written questionnaire where you explain how your condition affects daily living, work, memory, fatigue, and ability to care for yourself.

Take your time and be specific and honest.

4. Wait for the Decision (3–6 months)

Most first-time applications are denied. If this happens, don’t panic—you have appeal rights.

5. Appeal if Denied

The appeal process includes:

Reconsideration
Administrative Law Judge (ALJ) hearing
Appeals Council
Federal Court

Hiring a disability attorney is strongly recommended (they only get paid if you win, from your back pay).

Tips to Strengthen Your Application

Include co-occurring diagnoses (POTS, MCAS, IBS, migraines, ADHD, PTSD)
Ask your provider for a Residual Functional Capacity (RFC) form
Keep a symptom and flare journal
Track missed workdays, medical visits, and functional limitations
Be consistent across all forms and interviews

Helpful Resources

Social Security Disability Blue Book
https://www.ssa.gov/disability/professionals/bluebook/
Apply for SSDI and SSI
https://www.ssa.gov/applyfordisability/
Nolo’s Disability Secrets (Plain language legal advice)
https://www.disabilitysecrets.com
Legal Aid or Disability Attorneys
Search https://www.nosscr.org for a disability law expert in your area

Filing for disability is not giving up. It’s getting the support you’re entitled to so you can focus on managing your health. EDS is often misunderstood by systems that weren’t designed for fluctuating or invisible illnesses—but you don’t have to go through the process alone. Let this be your starting point. And if you’re denied—fight back. Many EDS patients win on appeal with the right documentation and advocacy.

THE Best Resources for Disability Claims When You Have a Connective Tissue Disorder

Designed for your attorney to leverage for specifics written and reviewed by multiple EDS medical experts to provide support to your case. https://www.nationalacademies.org/our-work/selected-heritable-disorders-of-connective-tissue-and-disability
Watch the EDS Empower Hour video interview with one of the experts Dr Eric Singman who was a participant writing the above report on how to use the guide. https://youtu.be/RvqZCYFoHbk
Read our patient guide with the basics of how to file for disability and the things to watch our for in this guide: https://eds411.forento.app/downloadables/222

Disability