Symptoms of myasthenia gravis that affect your facial expressions, speech, and ability to swallow can cause feelings of self-consciousness that may lead to social isolation. These tips can help.

Myasthenia gravis (MG) is an autoimmune condition that causes muscle weakness. It can lead to a variety of physical symptoms, such as:

  • drooping eyelids
  • double vision
  • diminished facial expressions
  • difficulty speaking
  • problems with swallowing

Living with a chronic condition that comes with visible symptoms can also take an emotional toll. According to a patient-driven analysis from 2021, people with MG often experience feelings of:

  • anger
  • anxiety
  • depression
  • frustration
  • guilt
  • loneliness

It’s OK if you want to keep to yourself from time to time, but prolonged isolation can have negative effects on your overall well-being.

You don’t have to go through this alone. These steps can help you connect with others and with yourself.

Knowledge is power, and that rings true when you have MG. The more you know about your condition, the more in control and empowered you can feel about navigating daily life with MG.

Gathering information about your symptoms and their causes, the progression of MG, and how to manage it all can help alleviate those feelings of uncertainty that could otherwise contribute to fear, anxiety, and the desire to isolate yourself from others.

It can also be helpful to notice whether your symptoms worsen at certain times of day. With MG, it’s common to have more severe symptoms at the end of the day, when you’re tired, or after you’ve been exerting yourself. Try to recognize these patterns so you can plan activities for the times when you’re less likely to experience symptoms.

Your loved ones are there to support you. Talking with those closest to you about what you’re going through can help you voice your concerns and work through your challenges with people you know and trust.

Symptoms of MG can fluctuate. Your loved ones might not know why you’re sometimes full of energy but at other times have trouble fully opening your eyelids, speaking clearly, or swallowing. It can be helpful to explain the details of these fluctuations to friends or family so that they can understand why your symptoms are so inconsistent.

Being open about your challenges also allows your loved ones the opportunity to lighten some of your responsibilities. For example, if MG makes it difficult for you to maintain the same activity level throughout the day, a loved one might be able to come pitch in with chores in the evening when you’re most fatigued.

By joining an in-person or online support group, you can connect with others who are living with MG and understand exactly what you’re going through. These groups are a way to engage socially in a supportive, understanding environment.

A qualitative analysis from 2022 notes that peer support groups are not just a way to connect with others who have MG — they’re also a great resource for sharing information and reducing isolation.

Social isolation in MG can have significant negative effects on your mental health. Isolation is associated with depression, reduced sleep quality, and impaired thinking ability.

Meeting with a mental health professional has a twofold benefit when it comes to isolation in MG. Not only do you have the opportunity to interact with another person in a nonjudgmental setting, but you can also work on developing skills to cope with the feelings that drive your desire to isolate because of MG.

Writing down your thoughts and feelings in a journal is beneficial for several reasons. It can help you:

  • sort through your thoughts
  • highlight feelings you might not be acknowledging
  • express something that has been on your mind
  • make room for more positive thoughts

Journaling won’t connect you with others socially (unless you’re openly sharing your thoughts), but it can help you sort through the feelings that can lead to self-isolation.

It’s not always easy to talk with people about MG, especially if they’re not close to you. But being open about your condition at work can improve your day-to-day experience on the job and reduce the anxiety and stress that may contribute to isolation.

Sharing your diagnosis with your management team can help those around you understand the unique daily challenges you experience and make reasonable accommodations that might help you feel more comfortable and more productive.

Depending on the type of work you do, you might need to cut back your hours, or you might be able to fulfill all of your work tasks with certain accommodations. Additionally, you may need to miss work to pick up prescriptions or to go to medical appointments.

Transparency and communication of expectations can help you maintain a healthy work-life balance as you take care of your health.

MG can make seemingly simple daily functions, such as swallowing, difficult. It’s OK to set boundaries on social interactions for your comfort.

For example, if you’re feeling uneasy about eating in front of large groups in a restaurant setting, stick to smaller, more intimate venues with one or two close friends.

You don’t have to go out to be social, either. Consider inviting a friend over for a movie night so you can have access to the foods you’re comfortable with in a setting that supports your life with MG.

Myasthenia gravis (MG) is a chronic condition that can cause weakness in multiple parts of your body. You might feel self-conscious about certain symptoms or overwhelmed by the stress of navigating MG each and every day.

While it’s OK to take time to yourself for self-care and recovery, long-term isolation can have a negative impact. Joining a support group, meeting with a mental health professional, and talking with loved ones can help ward off the feelings that contribute to isolation and empower you to stay connected.