REAL PEOPLE, REAL STORIES

MG Real Talks: The Ins and Outs of Being an MG Supporter

Watch myasthenia gravis (MG) supporters share their experiences of caring for a loved one with MG.

Supporters of people living with MG may feel overwhelmed and unsure where to start when faced with becoming a caregiver. To help them navigate that journey, this roundtable discussion covers tips for supporting loved ones with MG, keeping self-care a priority, effective advocacy and preventing caregiver burnout.

This discussion is part of our MG Real Talks series, featuring MG community members sharing their real experiences—like this conversation on navigating treatment coverage. Our latest video features a variety of MG supporters reflecting on their experiences with several topics, including:

  • How they learned about MG and what their supporter role would entail
  • Maintaining awareness of symptom changes in their loved ones
  • Helping their loved ones set and achieve goals
  • Balancing caring for themselves with caring for their loved ones
  • Their biggest challenges from being an MG supporter
  • Communicating mindfully and empathetically with their loved ones about MG, especially with it being an “invisible condition”
  • Working with a mentor who can relate to what they’re going through

Want more resources for supporting your loved one? Join Go for Greater, a community-wide challenge aimed to help achieve a greater everyday with MG, and start with Goal #1: Greater understanding from loved ones.

Learn more about the panelists

Our moderator, Diane,* has been a supporter for several years to her wife, Kathy,* who lives with MG. In addition to having caregiving experience, Diane is a psychotherapist with a wealth of insights. She has several tips for MG supporters that can help them communicate their own needs to their loved ones.

Travis* is a supporter to his wife, Kait,* who has lived with MG since she was a child. When it comes to balancing caregiving with both parenthood and his own well-being, Travis finds fitness to be a healthy outlet, as well as leaning on his support system.

Ashley* works in healthcare and is a supporter to her boyfriend, Mike,* who lives with MG. Since Mike was diagnosed with MG before they met, Ashley has learned a lot about the condition from him. She has also tapped into her workplace knowledge, however, when it comes to MG treatment.

Jerry* is a supporter to his wife, Karon,* who has lived with MG for 10+ years. They have learned about MG together from the beginning of their journey, and Jerry has gotten very involved in the MG community alongside his wife—from attending conferences to serving on advisory boards.

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<em>Goal #1:</em> <b>Greater understanding from loved&nbsp;ones</b>
FOR THE COMMUNITY

Goal #1: Greater understanding from loved ones

Even when your family and friends are highly supportive, it can still be hard for them to fully understand MG. This goal is about empowering you with the information to explain exactly how MG affects you—in a simplified way—to help them really “get it.”

LEARN MORE