Pain Community Mourns Loss of Patient Advocate Erin Gilmer
/By Pat Anson, PNN Editor
Erin Gilmer didn’t fail. The healthcare system failed her.
That’s what hundreds of Gilmer’s friends and followers are saying, as word spreads online about her death last week by suicide at the age of 38. Gilmer was a patient advocate and health policy attorney who intimately knew the problems faced by many chronically ill patients. She was one herself.
Gilmer lived with Type 1 diabetes, celiac disease, rheumatoid arthritis, neuropathy, carpal tunnel, depression and a string of other chronic health problems. According to friends, Gilmer was abandoned by doctors, could no longer work and was on disability. Lacking the financial resources to get good healthcare, she became increasingly despondent about her failing health.
“I loved you more than you could know. I’m sorry for all the ways I failed. I’m safe now,” Gilmer tweeted @GilmerHealthLaw on July 7. It was her last post.
“You haven’t failed me. There were many times you saved me. I hope that wherever you are, you’re safe & surrounded by love,” one follower responded.
“I don’t recall any ways you failed, but I treasure all of the difference you made in my life & the lives of many others,” said another.
“Erin, you haven’t failed at all. So many systems have failed you,” another follower tweeted.
In the days before she passed, Gilmer wrote frankly and honestly about her health issues, her posts reflecting a growing sense of finality.
ERIN GILMER
“I wish I could describe how bad the pain is but nothing seems adequate. I keep thinking it can’t possibly get worse but somehow every day is worse than the last,” Gilmer tweeted. “This pain is more than anything I’ve endured before and I’ve already been through too much. Yet because it’s not simply identified no one believes it’s as bad as it is. This is not survivable.”
According to fellow patient advocate Terri Lewis, Gilmer was labeled and shunned by doctors as a complex patient with mental health issues.
“Like so many others, Erin's life was squandered. The loss of her unique talents, capacity, and learning is just unbelievable to me,” said Lewis. “I am angry that we find it acceptable to foster a system of siloed ‘healthcare’ that continues to reward marginalization and abandonment of persons with chronic multiple comorbidities. The death of Erin and so many like her was predictable, a matter of time in a system perfectly designed to fail chronic care needs. This was no error. The system is working as it is designed.”
According to her blog, Gilmer received her law degree from the University of Colorado. She began her legal career in Texas as a disability rights attorney for several non-profit organizations. Gilmer also worked and consulted at Stanford University, the Patient Centered Outcomes Research Institute and the Agency for Healthcare Research and Quality (AHRQ). Gilmer moved back to Colorado and launched her own private legal practice in 2012, but was not able to work full time after becoming disabled.
She turned to advocacy as an alternative — educating doctors and patients about the anxiety and stress many chronically ill patients experience while navigating a broken healthcare system. In one of the last posts on her blog, Gilmer wrote about “betrayal trauma.”
“If we want people to trust health care, if we want people to heal from the chaos and pain of health care, if we want people to seek out care, we need to both understand the traumas we’ve endured, including betrayal trauma, and implement trauma informed care for all as soon as possible,” Gilmer wrote.
“Patients deserve better. Patients deserve fewer barriers to care and more compassion throughout care. Patients deserve to have their betrayal trauma acknowledged and repaired. Patients deserve to be believed and heard and treated with dignity and kindness.”
