Tips for Keeping Your Social Life Active With Myasthenia Gravis

Myasthenia gravis (MG) is sometimes called “the snowflake condition” because it doesn’t affect two people the same way. But no matter what physical symptoms you have, it’s important to keep up with your social life. Strong relationships with others are linked to better mental health and quality of life. And it can ensure that you have support to help you through even the toughest days. 

Think about joining a support group for people who live with MG. They’ll know firsthand what you’re going through. You can share experiences and offer advice. Studies show that helping someone else with MG can improve your outlook and confidence, which may help you feel more empowered. Ask your doctor, or find a group online through an organization like the Myasthenia Gravis Foundation of America.

Track your symptoms for a few days. For instance, what time of day do you feel best? When do your symptoms start and how long do they last? When do you have to take medicine and how does that affect you? Note the times that you have the most energy. The patterns you see could change in the future but may help you better plan your social activities right now.

Explaining MG to others can be helpful, especially if you have to back out of a get-together because you’re not feeling well. At first, you could keep it simple. For instance, you might say, “I have a condition where my muscles and nerves don’t talk to each other as well as they should.” You can also explain what your symptoms feel like. Let others know they can ask questions. Then, be prepared to answer them.

Don’t let the process of getting ready leave you too tired to go out. Do what you can to conserve your energy. For instance, avoid taking a hot bath or shower which can leave you feeling spent. Sit down when you brush your teeth, shave, put on makeup, or fix your hair. You could also get ready in stages and rest in between. And don’t forget to choose a comfortable outfit and shoes that are easy to slip on.

It’s common to have anxiety when you live with MG. Avoid drinking alcohol or caffeine, smoking, or doing recreational drugs. Although you may hope that they’ll help relax you, they could worsen your anxiety instead.

Asking for help gives friends a chance to support you. Be clear about what you need. For instance, “It’s better if I hold onto your arm instead of you holding on to me.” If talking or making facial expressions is a challenge, carry an information card with you that explains MG and how someone can best support you.

It can be hard to predict when MG symptoms like extreme fatigue and weakness will appear. On days you have an activity planned, try to nap before you go. A handicapped parking permit will let you park close to store or restaurant entrances. Consider using a cane or other walking device for extra support. Plan carefully for extreme temperatures. For instance, on very hot days, a cooling vest or damp bandana around your neck can help you stay comfortable.

Stress can cause your MG symptoms to worsen and may make it harder for you to step outside your comfort zone. Strategies that can help you manage it include listening to music, reading, meditation, visual imagery, gentle exercise (if you’re able) or doing a hobby you enjoy. Talking to a counselor or therapist could also make a difference. Think about finding someone who has other clients who live with a rare or chronic condition.

Being diagnosed with a rare disease like MG can make you feel alone. But when you have people in your life who care about you and want to understand what you’re going through, your symptoms may start to feel easier to manage. If you need help getting your social life restarted, talk to your doctor or connect with MG groups online.