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.”

Defining Your Story As a Patient Advocate

By Barby Ingle, PNN Columnist

Almost a year ago, I covered the topic of motivational speaking as a patient advocate for the pain community. A lot of the information I shared dealt with how to plan and organize for advocacy, but the messaging you use is equally important. It must be specific to the audience you’re trying to reach.

I have learned that honing and defining my story is an important aspect of being an advocate. I used to spew it all out and see what sticks, but have learned over the years that when I concentrate on a few key points specific to my audience I will be a more effective communicator.

For instance, when I spoke at a rare disease event, I focused on how rare conditions have impacted me and how more rare disease research and funding are needed. At a cancer event, I spoke about my experiences with cancer and the missing support I see in that area.

There is no specific way to advocate, but there are some basic guidelines that can help get you started. The first step is finding your own voice. You want to have your own message and share your own personal story. You don’t want to copy or act like someone else. I have told newbies, “Don’t try to be me. You be you, and I’ll be me.”

When honing your message, start with deciding what you want to talk about. Sometimes it is important to go wide and broad when talking about chronic pain, but other times it’s important to discuss your most pressing experiences with a specific disease or challenge.

There are thousands of issues that need working on in the chronic pain world, from access to medication to finding a compassionate doctor. Defining the issue that’s important to you is key. You must be able to explain your point of view and back it up with data and science that is relevant and recent.

Keep it simple. Think of 2 or 3 takeaways for your audience. What should the listener walk away knowing when you are done?  In many cases, such as testifying at a legislative hearing, you’re only going to get 2 or 3 minutes to speak. Respect the time limit and practice beforehand so that you can explain and emphasize your takeaways. Leave a few moments for follow up questions.

Remember, you are not sharing your message to prove someone else is wrong or to undermine them. You are there to share your story and the challenges that affect your daily living. I do a lot of reality television, and producers always remind me to only talk about what I want to bring attention to. If I talk about someone else’s message, it takes away from my own. Tell them who you are, how you are affected by a policy, and what can be done to solve it.  

Your personal story should be about you and what you have gone through. If you’re a caregiver whose spouse was put through step therapy and had delays in getting proper medication, how did that affect you?  What did that delay in care do to you? Why do you care about this cause? Let the audience know why you care.

Next, give them the takeaways. There should always be “an ask.”  What do you want your audience to do for you?  A state legislator may be voting on a specific bill that you want them to support or vote against. Or tell your audience how they can help spread awareness and advocacy.

Keeping the requested action positive is important and keeps it moving in society. You could ask other patients to discuss an issue with their friends or to be sure to vote. You can ask for just about anything, but be as specific as possible. If you are asking for others to make a change or believe in something you advocate, then you must show some expertise on the topic.

Understand that some words are trigger words that should be avoided. Instead of talking about how hard it is to get “opioids” or “narcotics,” say patients need better access to “pain medication.” They are all descriptors of the same thing, but have very different meanings and connotations.

It takes a lot of courage to share health topics and challenges we’ve been through. Many advocates, including myself, are ridiculed and shamed. PNN had a great column on this last month, “Stop Shaming Pain” by Mia Maysack. As Mia explained, you may encounter negativity even within our own pain community.

Your story should take others on the journey you’ve been on. Think about how you want your audience to feel and what your end goal for them will be. Being yourself, being vulnerable, and sharing your story are powerful ways to engage the public and create change.

Barby Ingle lives with reflex sympathetic dystrophy (RSD), migralepsy and endometriosis. Barby is a chronic pain educator, patient advocate, and president of the International Pain Foundation. She is also a motivational speaker and best-selling author on pain topics. More information about Barby can be found at her website. 

The information in this column should not be considered as professional medical advice, diagnosis or treatment. It is for informational purposes only and represents the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of Pain News Network.

What Is Patient Advocacy?

By Barby Ingle, Columnist

In the last few years there has been a boom in people wanting to be patient advocates. Not the paid positions that are filled by someone who works for a hospital or medical provider, but those actually affected by chronic pain – patients and caregivers -- who freely volunteer their time, energy, and efforts to help the pain community.

Patient advocates work to support a cause or public policy to improve patient care and better our community. They write to legislators, testify on behalf of pain patients, share social media posts, encourage research, speak up publicly, and talk about bettering the pain community.

Other names we could be called are patient champions, supporters, backers, proponents, spokespersons, campaigners, fighters, and crusaders.

There is a lot of chatter in the pain community about what patient advocates should be doing, so I thought it would be good to point out some things an advocate should not do.

An advocate does not get involved for their own sake. Hopefully, their advocacy helps their own pain care, but that should not be the main goal of their actions.

Advocates should not take on the role to “get even” with someone, whether it’s a doctor, hospital, politician or another advocate. Far too often people get mad because they can’t get the care they need and speak up only to get back at whoever they think wronged them. Being a patient advocate should not be at the expense of others or to seek power and influence.

There are many types of advocacy, but what will ensure success and make a difference is to avoid the pitfalls of advocacy. If you are mentoring others, be sure to have strict confidentiality as health topics are a very sensitive subject. Refrain from abusive conduct, even if the people you are assisting are abusive. Remove yourself if that becomes the case.

Some people just don’t want the help or advocacy you offer. It could be a cultural conflict, mental issue, or just that you don’t gel with them for a variety of reasons. Be okay with that, let it go and help those who actually want your help.

You should be trustworthy and honest in all the actions you take. An advocate is willing to disclose all personal conflicts of interest to those they are advocating for and with, so that any perceived or actual biases are known. We should not ever compromise our personal beliefs while advocating for others.

Advocacy is not creating more conflict or strife. A good patient advocate is going to work to solve problems, not create new ones. Advocates should not try to change what is working, but instead should work to stop unfair practices, abuse, and the under/over treatment of patients. We need to increase treatment options, services, and proper and timely care.

When we remove those barriers, advocates increase society’s ability to offer full opportunities for pain sufferers.

Barby Ingle lives with reflex sympathetic dystrophy (RSD), migralepsy and endometriosis. Barby is a chronic pain educator, patient advocate, and president of the International Pain Foundation. She is also a motivational speaker and best-selling author on pain topics.

More information about Barby can be found at her website.

The information in this column should not be considered as professional medical advice, diagnosis or treatment. It is for informational purposes only and represents the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of Pain News Network.