Tips for Talking to Others About Your Myasthenia Gravis

Having a disease like myasthenia gravis (MG) can put pressure on relationships. You may feel stressed about how MG changes your life or worry about needing to ask for help. You may wonder how much you should share with family, friends, and coworkers or whether you should mention it at all.

Talking about any health issue is a personal decision. How and when you share medical information may also depend on how it impacts your home life, friendships, or work. You should do what feels comfortable for you. You are under no legal obligation to tell people about your diagnosis.

If you decide to share some details, here are some tips for talking to friends, your boss, or loved ones about your MG.

Prepare ahead of time

It can be tough to open up to your boss or family about your condition and how it impacts your world. However, people around you may think that your weakness, fatigue, or problems concentrating are a lifestyle issue if you do not explain that you have MG.

Learn more about MG first. If you educate yourself about MG symptoms, then you can educate those around you. If you need to ask for accommodations at school or work, read about your legal rights. Be prepared to discuss the specifics of what you need to be productive. A teacher or boss may assume an accommodation is complicated and expensive when all you need is:^1,2

• Flexibility to move certain tasks to times of the day when you have the most energy
• A parking space close to the building to reduce walking
• A cart to make moving things around the office easier
• Regular rest breaks to sit, lay down, or rest your eyes
• A stand-lean stool to reduce the amount of standing
• To use the elevator instead of the stairs

Sharing how you feel both physically and mentally, and what they can do to help, can make your life easier. When others understand what is behind your need to rest, and that it might not happen every day, they can be more supportive.

When telling others about your MG, be sure to let them know whether you are okay with other people knowing. Finally, be prepared to answer the question: “How can I help? What do you need”?

Discuss the impact of MG

Everyone feels tired at one time or another, but myasthenia gravis is more serious than that. Despite this, other people may not understand how seriously MG may impact many parts of your life. Communication can help.

Talk with your loved ones about the very real ways MG impacts you. Some examples might be:^1,2

• You may have noticed my eyelid droops sometimes. That is because I have MG. It is an autoimmune condition that makes certain muscles weak. For me, it is the eye muscles.
• I am unsteady on my feet these days because of myasthenia gravis. It is a condition that keeps my leg muscles from getting signals from the nerves.
• I cannot come to your party because having MG means I run out of energy by the end of the day. Can we meet for breakfast or lunch one day to celebrate?

Like other invisible (or mostly invisible) illnesses, people may react with words that imply you are exaggerating, such as, “But you look fine”. Or, they fail to recognize your distress with statements like, “I wish I could take extra breaks at work”. They may also try to offer advice they believe is helpful. An example of this would be telling you that more exercise will help your muscle weakness, not realizing pushing yourself makes the weakness worse.

It may help to invite a loved one to your next doctor’s appointment. Your doctor can explain the changeable nature of MG and reinforce the need for lifestyle changes that reduce stress.

Be prepared to explain the details you are comfortable sharing, but do not feel pressure to make your life an open book. Once you become more comfortable sharing your needs, you may find those around you are a powerful source of support.