Navigating Emergency Care with ME, FM, and Long-COVID: Challenges and Guidance

Emergency care is meant to be a safety net—a place to turn when symptoms escalate or a crisis hits. But for individuals living with ME, FM, or Long-COVID, visits to the ER can often feel more like an uphill battle than a lifeline.

This post explores the unique challenges our community faces in emergency settings, shares lived experiences from across British Columbia, and offers practical tools to help prepare for and navigate these often difficult situations.

Ongoing Struggles in Emergency Rooms

Many in our community end up in emergency rooms when symptoms flare without warning. But due to limited awareness and understanding, these visits often lead to frustration rather than relief.

“I was told I was just having a panic attack—again. No tests, no listening, just dismissal.”

Experiences like these are far too common. Complex symptoms such as pain, fatigue, shortness of breath, or cognitive dysfunction are often misunderstood or minimized. Without proper recognition, individuals may receive care that is not only unhelpful—but at times, harmful.

Dismissal and Misunderstanding

A recurring issue is the invalidating nature of emergency care for those with ME, FM, and Long-COVID. Many report being misdiagnosed with anxiety or panic attacks rather than having their underlying conditions addressed.

Environmental sensitivities—like the need for dim lighting, reduced noise, or a place to lie down—are often ignored in emergency settings, further compounding symptoms.

These encounters can leave people feeling gaslit and deeply disrespected.

The Weight of Self-Advocacy

In high-stress environments like ERs, the ability to clearly advocate for oneself can be hindered by brain fog, pain, or exhaustion. Yet for many, self-advocacy has become a necessary survival tool.

That’s why some in the community take proactive steps: preparing health summaries, writing down key information, or bringing along someone who can speak on their behalf when needed.

Growing Reluctance to Seek Care

Perhaps most concerning is the increasing number of people who avoid emergency care altogether—even when facing a true crisis—because past experiences were so negative.

“The entire system is a mess and creates frustration and trauma. I no longer seek medical care, even in situations that many would deem an emergency.”

When trust in emergency care is broken, it puts lives at risk. This is not a personal failing—it’s a systemic one that urgently needs addressing.

A Call to the Medical Community

Emergency departments must do better.

Education and training about complex chronic conditions like ME, FM, and Long-COVID are essential. Emergency staff should be equipped to recognize and respond with care that is trauma-informed, respectful, and adaptable to the individual in front of them.

A small shift in awareness can lead to significantly better outcomes.

Emergency Room Guide: Tools for the Community

While we continue advocating for systemic change, here are practical steps that individuals and caregivers can take to feel more empowered when emergency care is needed:

 Before You Go:

• Know Your Rights: You deserve respectful, appropriate care.

  
  

• Prepare a Medical Summary including: (Template here)

  • Diagnoses

  • Medications (with dosages)

  • Allergies or sensitivities

  • Emergency contacts

  • A list of current symptoms and environmental needs (e.g., dim lights, quiet, ability to lie down)

 What to Bring:

• Printed information about your condition

• A concise symptom list and necessary accommodations

• If possible, a support person to help communicate on your behalf

In the ER:

• Be calm but clear about your needs

• Request adjustments (such as a quieter space or low lighting) if needed

• If your concerns are dismissed, ask to speak to a supervisor or charge nurse

 After the Visit:

• Follow up with your regular healthcare provider

• Document the experience: What helped? What didn’t? Use this to prepare for future visits or provide feedback

Working Toward Change—Together

Living with ME, FM, or Long-COVID is already a full-time challenge. Emergency care shouldn’t make it harder. Whether you’re living with one of these conditions, supporting someone who is, or working in healthcare, we all have a role to play in building a more inclusive and responsive system.

Let’s continue pushing for care that sees us, hears us, and meets us with the compassion we deserve.

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