Options, accommodations, and strategies to survive—and maybe even thrive—while managing Ehlers-Danlos Syndrome in the workplace.
Can You Work with EDS?
Yes—but how, when, and how much work you can manage with Ehlers-Danlos Syndrome (EDS) varies greatly. Some people work full-time in traditional jobs with accommodations. Others freelance or work remotely. Many navigate the transition to part-time, disability, or career pivots out of necessity—not failure.
Work and purpose matter, but your health and functionality come first.
Common Challenges of Working with EDS
EDS can affect your ability to work in multiple ways:
- Chronic pain and fatigue from joint instability or POTS
- Flare-ups that disrupt attendance or focus
- Sensory overload or mast cell reactions in certain environments
- Frequent medical appointments
- Postural instability with prolonged sitting or standing
- Brain fog or neurocognitive dysfunction
Coping Strategies for Those Still Working
If you’re managing to stay in the workforce—whether full-time, part-time, in-office, or remote—here are practical suggestions:
- Build a Pacing Routine
Take mini breaks every 30–60 minutes.
Rotate positions: sit, stand, stretch.
Use timers, alarms, or apps like TimeOut or Pomodoro timers to pace. - Master Ergonomics
Use ergonomic chairs with lumbar support or pelvic cushions.
Invest in a sit-stand desk or a laptop riser.
Use voice-to-text software to reduce hand strain (e.g., Dragon or built-in tools). - Manage Energy, Not Just Time
Plan demanding tasks during high-energy times.
Batch tasks that require similar posture or movement.
Don’t schedule back-to-back meetings if you can avoid it. - Keep a Flare Toolkit at Your Desk or Workstation
TENS unit, ice/heat packs
Compression gear
Rescue meds (antihistamines, pain relievers)
Noise-canceling headphones or light-blocking glasses
Reasonable Accommodations You Can Request
Under the Americans with Disabilities Act (ADA), employers are required to provide reasonable accommodations to qualified employees with disabilities. You are not required to disclose your full diagnosis—just the functional limitations.
Common EDS-friendly Accommodations:
- Flexible or reduced schedules
- Remote or hybrid work arrangements
- Frequent rest breaks
- Ergonomic furniture and adaptive equipment
- Reserved seating or parking close to entrances
- Modified physical demands (no heavy lifting or prolonged standing)
- Voice software or alternative input devices
- Adjustable lighting or scent-free policies for MCAS triggers
Requesting Accommodations – How To:
Put your request in writing: You can use plain language, but include the basics: what you need and how it helps.
Keep the focus on functionality: Frame it in terms of what allows you to keep working effectively.
Include documentation from a provider if requested—EDS-aware letters from doctors, PTs, or occupational therapists can be helpful.
Follow up in writing and keep records of communication.
Resource: Job Accommodation Network (JAN)
Career Flexibility: Thinking Outside the Cubicle
EDS can push you to reimagine how you work—not just where. Many patients find success in:
- Remote or freelance work (writing, design, virtual assistance)
- Consulting roles with control over pacing
- Part-time employment or job sharing
- Starting a small business or passion-based service
- Disability advocacy, speaking, or mentoring
- Creative work that allows flexibility and flow
When It’s Time to Step Back or File for Disability
It’s not giving up. It’s getting support.
If working full-time becomes unsustainable even with accommodations, it may be time to:- Discuss FMLA (Family Medical Leave Act) options
- Apply for Short-Term or Long-Term Disability through your employer
- Explore Social Security Disability Insurance (SSDI) if work is no longer possible
Helpful Guide: Social Security Disability and EDS
Self-Advocacy in the Workplace
- You don’t need to “prove” your pain. You need to document your needs.
- Be proactive, but protect your boundaries.
- Use neutral, professional language.
- Connect with a therapist, coach, or advocate to build your confidence.
Your job should never cost you your health.
EDS often demands flexibility—not because you're less capable, but because your body has different requirements. With the right tools, creative problem-solving, and support, it is possible to maintain meaningful work or reinvent what “career” means on your own terms.
