Patients Rising director stresses importance of self-advocacy

Education and connection key to 'being bold enough to speak your truth'

Marisa Wexler, MS avatar

by Marisa Wexler, MS |

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For people with myasthenia gravis (MG) and other chronic diseases, it’s important to be proactive in learning how to best manage the condition and connect with others in the disease community.

“The first thing I really need to let you know is that you’re the only person who can really make yourself empowered,” Jim Sliney Jr. said in his presentation at the MG Foundation of America (MGFA) National Patient Conference, held March 26-28 in New Orleans.

Sliney is director of patient outreach at Patients Rising, a nonprofit organization that aims to provide education, resources, and advocacy for people with chronic illnesses. His presentation was titled, “Empowering the Patient.”

“Empowerment is a self-actualization process where you find the tools that you need to be more successful as a patient. That’s important because of course we live with a very complicated, sometimes a little backwards, healthcare system, so we need to know how to navigate it,” Sliney  said.

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Empowerment begins with study of disease symptoms, treatments, and trials

According to Sliney, the first step to patient empowerment is learning about the disease, including getting a handle on some of the commonly associated medical jargon.

“Learning about your disease is incredibly important,” Sliney said. “Studying up on your disease, symptoms, signs, and treatments, and research opportunities that are available is really crucial, because when you go into a conversation with your doctor, you need to be speaking the same language.

“Understanding the terms and phrases that doctors use helps you communicate better with them. That’s health literacy, essentially,” he said.

Education can help patients be an active part of conversations with healthcare providers, and self-advocating where and when necessary is critical for getting the best care outcomes possible.

“Scientists and doctors can come up with all kinds of plans, tests for measuring things, but it’s really your input, your feedback, that makes all the difference. To be an empowered patient means being bold enough to speak your truth when it’s necessary,” Sliney said.

“I would argue that the doctors have as much to learn from what you have to say as you have from what they have to say,” he added. “You’re an expert in your disease state, in your signs and symptoms. So you should always feel emboldened, empowered, to speak up at any opportunity.”

It’s also important for patients to be educated about the workings of the healthcare systems they have to navigate in, from pharmacies to insurance companies.

“The more you understand, the less likely you are to fall into the traps that insurance sets for you,” he said. “You need to know the tricks that they’re using so that you can step around them.”

Patients Rising offers a range of resources, including a helpline

He noted that Patients Rising offers a range of educational resources, from tips on navigating insurance to classes on effective legislative advocacy. The organization also is planning to launch a storyteller’s guild, which will offer tools to teach patients how to tell stories in different contexts, from journaling and emotion processing to communicating with doctors and legislators through strategic storytelling.

“At Patients Rising, giving people learning opportunities is one of the most important things we do,” he said.

Networking with other people in the disease community also is an integral part of patient empowerment, especially for people newly diagnosed with MG, Sliney said. He noted that patient-support organizations like the MGFA can be a valuable resource.

“Any new diagnosis is frightening. You don’t know where to go, you don’t know what to do. So, leaning on people who’ve already been through that scary time, and have learned a lot from it, is really important,” he said.

“We’re all patients at one point or another, and so we all have similar obstacles that we have to overcome. So if we share our experiences together, we may be able to avoid some of those mishaps. That’s really what empowerment is about,” Sliney added.

To help facilitate this type of communication, Patients Rising offers a helpline, accessible by phone or email, where patients and caregivers can ask specific questions seeking advice, and receive guidance from people with experience navigating life with a chronic disease.

“The navigators on our helpline are themselves chronic illness patients who have been through the wringer. These are people who were on Social Security disability at some point, were able to come off and work full time with Patients Rising … They’re the real deal. If you call and you speak to them, you’re talking to somebody who knows,” Sliney said.

Sliney said the helpline can offer assistance with a range of different issues and services, from help with caregiver respite to navigating the transition into hospice care.

“The helpline is there to field all of these issues and find solutions for them,” he said.

Helping patients find transportation has been a major part of helpline work, according to Sliney.

“What do you do when you need to get to urgent care today, or the ER now, but you don’t want to mortgage your house to pay for an ambulance? There are lots of opportunities for federally licensed transportation services. They’re kind of all around us all the time, but we don’t know about them,” he said.

“So, one of the things that we do at the patient helpline is we work with the Community Transportation Association of America to keep a database of where all of these transportation services are,” he added.

“We just listen to what people have to say, and when enough people say, ‘I have this problem over here,’ we go and we research it and curate resources from the best places we can find,” Sliney said. “We’ll even do projects with hospitals or sponsor companies to learn more if there’s an absence in that space in knowledge.”

People with chronic diseases, he added, largely tell Patients Rising what it should be doing with its time.