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Tip 1: Become Your Own Expert
Learning about your condition empowers you to make informed decisions. Inform yourself about MG symptoms, treatment options, and how the disease affects your body. Keep a journal and track what triggers symptoms or helps you feel better. This knowledge will be invaluable when working with your healthcare team and planning your daily activities.
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Tip 2: Listen to your Body
Every MG patient knows their symptoms fluctuate day to day or even during the same day. That is why it is so important to pay attention to your energy patterns and be prepared to change plans accordingly. Always rest before you become depleted and never try to push through severe fatigue. Learning to pace yourself and take breaks is not giving up—it is smart management of your unique journey with a challenging disease.
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Tip 3: Build Strong Healthcare Relationships
Because MG patients usually take a long time to get diagnosed and are often disappointed by their medical experience, it can be especially challenging to build positive, healthy relationships with their healthcare team. But you still need to do it—for your own good. Work closely with your neurologist and other members of your healthcare team. Come prepared to appointments with questions, symptom logs, and updates about how treatments are working. Never hesitate to speak up and be your own best advocate, but try to be compassionate with others, too. At the end of the day, you and your healthcare providers are all on the same team.
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Tip 4: Plan and Adapt
Flexibility is crucial when living with MG. Have backup plans for important events and never be afraid to modify activities to accommodate your energy levels. This might mean breaking tasks into smaller chunks, asking for help, or finding new ways to do things you enjoy or need to get done. Being flexible and adaptable is an important tool in the toolbox for anyone living with MG.
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Tip 5: Stay Connected
MG can make you feel isolated, so it is important to stay connected with others. Interacting with your main network—your family and friends—is vital for your mental and physical health. Beyond that, online resources, including this website, are great ways to connect with others who can use your support just like you need theirs. Sharing experiences and tips with people who truly understand MG is valuable on so many levels.
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Tip 6: Prioritize What Matters
You may need to make tough choices about how to spend your energy. Focus on activities and relationships that bring you joy and fulfillment. One of your priorities should be putting yourself first and knowing it is okay to say "No" sometimes, especially to commitments and social obligations that may drain you. This is not being selfish—it is managing your sometimes limited energy wisely.
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Tip 7: Prepare for Emergencies
When you educate yourself about MG, you will learn about two of the greatest dangers: myasthenic and cholinergic crises. These distinct but related conditions can be life-threatening for MG patients, and it is important to have a plan for medical emergencies like this. Without medical intervention, respiratory failure and other complications are possible. Keep important medical information easily accessible, including your medication list, emergency contacts, and contact information for your healthcare team. Consider wearing a medical alert bracelet that identifies your MG diagnosis.
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Tip 8: Be Your Own Best Advocate
No one is better equipped to advocate for you than... you. Never hesitate to speak up in medical settings. Ask questions until you understand your treatment options. Request second opinions when you are uncertain or insist on being heard when something just does not feel right. If a medication is not working or is causing problematic side effects, voice these concerns clearly—your comfort and well-being matter!
At work, school, or in social situations, ask for the accommodations you need to participate fully. This might mean requesting flexible scheduling, modified duties, or physical adjustments like preferred seating. There should be no shame in setting yourself up for success and being comfortable. You deserve it!
