Getting the right care at the right time can be important for a broad range of health needs. And for people living with chronic conditions like myasthenia gravis, the quality of healthcare they receive may make a big difference in their everyday abilities and lifestyle.

There are many factors that affect a person’s healthcare options—geographic location, insurance status and living with physical disabilities can all contribute to disparities in the healthcare they’re able to access.¹

And even today, well into the 21^st century, race is also a factor behind differences in healthcare. Take this example: One 2017 retrospective study looked at time spent seeking medical care across different racial groups in the United States. The study found that face-to-face time with a provider was similar across different racial groups, but the “time burden”—from filling out paperwork to waiting at the office to be seen—was about 25% longer for racial and ethnic minorities.²

Whether it’s about symptom control or getting closer to your goals for living with MG, strong self-advocacy may help you push for better outcomes. And it may also help you get more out of your conversations with your doctor.

What Does Self-Advocacy Mean?

For Courtney, who’s been living with MG since 2001, it means trusting herself to know her own body and how MG affects her. “My doctor might be an expert in myasthenia gravis,” she said, “but I’m an expert in Courtney.” This sense of trust in herself gives her the confidence to stay firm about what she wants and needs in conversations with healthcare providers.

For Alexis,* who lives with MG and leads the Georgia MG group, knowledge is power. “Do your homework before you go in for an appointment,” he said. “That’s what I preach. Educate yourself by becoming a bookworm about myasthenia gravis.” He emphasizes to the support group he leads that the more someone knows, the more confident they’ll be going into an appointment.

Confidence, he believes, supports an even more important skill: assertiveness. “Sometimes the people I talk to in my support groups worry that being assertive is being confrontational or aggressive,” he said. “They feel like they’re being rude. But it’s not about being forceful—it’s about being very firm about what you need in a respectful way.”

What Does Self-Advocacy Look Like in Practice?

Self-advocacy for Alexis has meant not being afraid to state his needs at an appointment. Recently, at a visit with a new doctor, he found the conversation veering away from the experiences he had wanted to discuss. He even found himself being interrupted a few times as he answered the doctor’s questions. He responded by pausing to redirect the conversation, pointing out that being heard was important to him. 

In that experience, he felt that simply asking for a little additional space to speak changed the overall tone of the appointment for the better. It’s not that doctors don’t want to listen, he said, but they don’t always automatically know exactly what you need and want from your communications. He finds that being clear about his needs often strengthens the relationship with a provider in the long run.

For Courtney, part of being a strong self-advocate has been finding a neurologist that understands and supports her goals. After seeing a few different neurologists over the years, she feels her current doctor really understands the kind of life she wants to live with MG.

“Our doctors are definitely keeping our health in mind,” Courtney said. “But that doesn’t mean I automatically accept it when they use words like ‘can’t’ and ‘shouldn’t.’” She believes it’s okay to probe for more information and to push to ensure your doctor understands your needs.

Tips for Being a Stronger Self-Advocate

Visualize a positive outcome. “Visualization has really helped me,” Courtney said. “Just picturing the appointment going my way.” This can be a way to help you mentally prepare ahead of time and maybe even “rehearse” what you’d like to say.

Bring a supporter along. “If you don’t feel you have that assertiveness,” Alexis said, “think about bringing somebody with you.” That can be someone you trust to speak up for you—or just someone whose presence makes you feel more confident.

If you’re able, consider a switch. Courtney remembers seeking a new neurologist not long after her initial diagnosis. She realized she wanted a provider she could form a stronger partnership with. “I wanted to feel like we had created a solid plan for moving forward with my MG treatment,” she said. Now, she has a neurologist she feels she can truly partner with to work toward her goals.

Bring a list of questions—and statements. “It’s not just a Q-and-A,” Alexis said. “Be sure you know what you want your doctor to take away from the visit too.” He recommends writing down your questions and the topics you want to discuss ahead of time—such as symptoms, any potential drug interactions the doctor needs to know about or if you have any treatment concerns you’d like to discuss.

Coming into the appointment with your thoughts already organized may also help your provider focus on the things that are most important to you. And if you’re looking for a tool to help you put your thoughts together, check out this downloadable discussion guide.

The thought of steering your healthcare discussions like this may feel a little uncomfortable at first. But sometimes, doing so may help you avoid facing the same frustrations in the future—and it may even help you reach your MG goals.