Community Views: Shifting Perspectives After an MG Diagnosis

A myasthenia gravis (MG) diagnosis can change many things in your life. Energy, activity level, pain, and stamina can shift daily. Your outlook on life can shift as well.

Members of the Myasthenia-Gravis.com Facebook community recently answered the question: How has MG changed your perspective on life?

Here are some of the things they said:

Not taking health for granted

Respondents mentioned how their life had changed with an MG diagnosis. Many face new limitations. For some, MG gives them an appreciation for the days they do feel well. They don't take their good days or health for granted.

“It has completely humbled me. I take nothing for granted.”

“I appreciate everything and everyone more than I ever did. I take nothing for granted. And I’m more forgiving of my limitations.”

“I never take active days for granted.”

“It’s making me realize that I must stop taking things for granted.”

Daily living

Activities of daily living and other tasks tend to become more challenging with MG. Respondents shared how their daily lives have shifted with the condition. Tasks and plans must stay flexible to accommodate changes in daily energy and pain level. You may need to adjust your living space.

“I have learned the value of having patience with myself, not only in the important life events, but also in each and every little task I attempt to do!”

“Makes me realize single-story homes are maybe a better choice as time goes on.”

“It makes you realize how day-to-day activities that were once considered no big deal are a big deal!”

“I have learned not to sweat the small things, to grab hold and enjoy what life can offer, rest when I need to, and go when I can.”

“I must stay very flexible in all my activities because I never know if I will be strong enough to finish my project, shopping, cleaning, etc.”

It is a struggle

MG can feel like your life is turning upside-down. It's not always possible to stay positive. Many respondents shared deep frustration and anger. They struggle with the challenge of being in their bodies. Quality of life can be affected. It is difficult to make plans when each day’s mobility is uncertain.

“I’m mad that this changed everything: your face, your weight, how you walk, your relationships with everyone. Maybe one day I’ll be in a better state of mind, but for now, I’m just angry.”

“To never underestimate the impact of invisible diseases on those that have them.”
“It has destroyed my son’s life. He is 60 and has had it for 9 years, that we know of. He has no quality of life.”

“To be honest, it has completely shaken my faith in the universe. I shouldn’t have to be grateful that some days I get to have a normal functioning body. My body and spirit have been destroyed because of this illness.”

Attitude of gratitude

Several respondents shared how MG helps them appreciate life more. Many days can be challenging. They value the good days. They try to find the silver linings. There is much gratitude for loved ones who step up to help. Respondents are also grateful for good neurologists.

“Definitely more grateful for what I have. I value those so much that stuck around to offer help, visit, lend a hand, etc. My family is my rock.”

“I count every day as a blessing and try to work to make my wishes come true.”

“I value every day more now and am thankful I have a good support system and neurologist.”

“Gratitude for more of the little things.”

“I have myasthenia gravis but myasthenia gravis doesn’t have me.”

Thank you

The team at Myasthenia-Gravis.com appreciates all the insightful responses to our question. MG can be a challenging diagnosis to have. It can feel affirming to know there are other people with similar experiences.