How Does Myasthenia Gravis Affect Body Image?

Myasthenia gravis (MG) can change more than how strong your muscles feel. Visible differences in how you look, like a drooping eyelid, a smile that looks different, or changes in your weight or the shape of your face caused by treatment, can also make your body feel less familiar and affect how you feel about yourself.

“Body image issues with MG are not only about how a person looks or how their appearance has changed, but they are also about how a person connects with their body,” says Jennifer Denkin, PhD, a clinical psychologist at the Center for Behavior and Nutritional Health and a clinical instructor in the department of psychiatry at Yale School of Medicine in New Haven, Connecticut. This often translates to how a person can trust or rely on their body to operate in a certain way, she says.

Here’s how MG can affect the way you relate to your body, and what can help if changes in how you look or function are weighing on you.

How Myasthenia Gravis Can Change Your Body

“How someone with MG feels and looks depends on which muscle groups are affected,” says Yuen So, MD, PhD, a professor emeritus of neurology and neurological sciences at Stanford University and a neurologist with Stanford Health Care in Palo Alto, California.

Some MG changes are particularly relevant to body image, such as the following.

Eyes and Facial Expressions Drooping eyelids, or ptosis, can affect one or both eyes, and weakness in the muscles that control the eyes can sometimes make the eyes appear misaligned, says Dr. So.

How Physical Changes Can Affect Your Mental Health

It’s not uncommon for people to develop symptoms of depression or anxiety because they're struggling with the physical changes of MG, says Dr. Denkin. “The inability to control voluntary muscles causes a great deal of stress for people,” she says.

Many of the affected parts of the face and body are used in human expression and communication, says Denkin. “People may feel self-conscious about ptosis or their inability to fully smile, and this may lead to social avoidance, negative self-talk, and feelings of low self-esteem,” she says.

There’s also the unpredictability of MG itself. “Even in ‘remission,’ MG can flare up at any time. This unpredictability can cause anxiety, worry, or a hyperfocus on physical symptoms,” Denkin says.

Fatigue may keep you from socializing or doing other activities that normally make you feel good, which can further affect mood and well-being, she says. Taken together, these changes can make it harder to feel at ease in your own body.

How to Improve Your Body Image

There are several ways to start rebuilding a more comfortable relationship with your body. Small shifts in how you think about and respond to your body can make a meaningful difference over time.

Practice Acceptance Without Pretending You Like Having MG

“Acceptance does not mean that you are ‘okay’ with having MG or that it doesn’t cause you any distress,” Denkin says.

Instead, it means trying to put less energy into wishing MG or its effects weren’t there and more into finding ways to live well with the body you have now, she says.

“Acceptance and commitment therapy (ACT) and cognitive behavioral therapy (CBT) are excellent treatments to help patients achieve a resilient and proactive mindset in their journey with MG,” says Denkin.

Try Practicing Body Neutrality

You don’t have to love every physical change you’ve experienced to develop a better relationship with your body.

Denkin recommends adopting a mindset of body neutrality, which shifts attention away from whether you like how your body looks.

“Promoting body neutrality, or accepting what your body can do and not what it looks like, [may] reduce self-criticism,” she says. Instead, Denkin suggests being mindful of your inherent strengths as a person who existed prior to the diagnosis of MG, which keeps you in touch with your authentic self.

Engage in Self-Care to Support a Positive Sense of Self

“MG does not define a person’s identity,” Denkin says. She recommends paying attention to qualities that have nothing to do with appearance or physical ability, such as being funny, creative, intelligent, caring, or curious.

Self-care can reinforce that broader sense of yourself, too. Depending on what feels restorative to you, Denkin suggests activities such as:

• Spending time in nature
• Preparing a meal you enjoy
• Listening to music
• Taking a bath or doing another relaxing activity

The idea is to give your mind and body care rather than continually treating your body as something that needs to be judged or fixed.

Give Yourself Space to Grieve Changes

You may genuinely miss how your body looked, felt, or functioned before MG, and you don’t need to talk yourself out of those feelings.

“Processing the grief around the physical changes is imperative for emotional healing and will help to improve body image,” Denkin says.

If you’re feeling persistent anxiety, depression, low self-esteem, or you’re avoiding people and activities you previously enjoyed because of poor body image, an MG support group or a therapist who has experience with chronic illness can help you work through those feelings, she says.