Navigating together: working with your doctor
Together, you and your doctor can find the best path forward, make informed decisions, and ensure that your care truly fits the needs of your unique treatment journey. Every question and concern matters, and your care team is here to support and guide you.
What is shared decision-making?
Shared decision-making (SDM) is a process used by people and their healthcare providers to make important decisions together. Think of it as planning your MG journey with a trusted guide. In SDM, you and your provider work as a team to:
Recognize that a decision needs
to be made.
Review the available options,
with your provider sharing choices based on the latest medical science.
Choose the path that fits you best, considering your goals, values, and preferences.
By partnering in this way, SDM helps ensure your care plan is tailored to you, and can boost your confidence in the choices you make together.
Shared decision-making in action
We arrived at MG in different ways and our journeys are unique. SDM empowers you to play an active role in your care, supported every step of the way. Here are a few real-world examples:
Scenario 1: Deciding on a treatment plan
Sasha was recently diagnosed with myasthenia gravis (MG), an autoimmune neuromuscular disorder characterized by weakness and fatigability of muscles. At her appointment, she and her provider agreed it was time to discuss treatment options. Her provider explained the choices available, including possible benefits and side effects.
They talked about Sasha’s hopes; like keeping up with her young kids and minimizing fatigue. With all the information on the table, Sasha felt comfortable sharing her priorities and concerns.
Together, they chose a treatment plan that matched Sasha’s lifestyle and goals. Along the way, her provider reassured her: “If we need to adjust the plan, we’ll navigate that together.”
Scenario 2: Considering a return to work
Sam left his job a few years ago to focus on his health after being diagnosed with generalized myasthenia gravis (gMG).* Now that his symptoms are under better control, he’s considering returning to work but feels unsure if managing a job might make his symptoms worse.
At his next appointment, Sam and his provider used shared decision-making to explore all the options together. They discussed the pros and cons of working full- or part-time, or not working at all, and Sam decided to try a part-time position.
With regular check-ins and encouragement from his provider, Sam felt empowered to move forward, knowing his care plan could always be adjusted along the way.
*Generalized myasthenia gravis (gMG) is a form of MG in which muscle weakness extends beyond the eyes to affect muscles throughout the body, including those involved in speaking, swallowing, and limb movement.
Road Map: Take an Active Role in Decision Making
With easy-to-follow activities and prompts, this practical workbook guides you to identify your goals, track daily adaptations, and prepare for honest conversations with your healthcare team. It’s a supportive tool to help you and your provider make decisions together, so your care plan truly fits your life.
Why shared decision-making matters
The goal of shared decision-making is to make sure you have an active voice in your healthcare journey. By working together with your doctor, you can choose a care plan that reflects your own preferences, values, and goals beyond what’s written in a textbook.
Because MG is often called “the snowflake disease” (no two experiences are exactly alike), it’s especially important to speak up about what matters most to you. Shared decision-making empowers you to share your priorities and helps your care team support you and keep you on track so your treatment plan truly fits your unique path.
Tips for shared decision-making
Clear communication helps keep your MG journey on the right track. Here are a few ways to make your conversations with your provider smoother and more effective:
Write down your questions and symptoms.
Before your appointment, jot down what you want to ask and any changes you’ve noticed. This helps you remember what’s most important, even if you feel nervous or rushed.
Bring a support person.
Invite a trusted friend or family member to appointments. They can help take notes, ask questions, and provide encouragement along the way.
Share how MG affects your daily life.
Talk openly about any adaptations or changes you’ve made at home, at work, or with loved ones. This gives your provider a clearer picture of your needs.
Use “I” statements.
Express your feelings and concerns directly, such as “I feel worried when my symptoms change,” so your provider understands what matters most to you.
