Community Views: What You Wish People Understood About Myasthenia Gravis

Living with a rare disease means a lot of questions like, "You have what?" Myasthenia gravis (MG) is a diagnosis many do not understand. After explaining the disease, loved ones may still not appreciate the impact.

To learn more about this issue, we turned to the Myasthenia-Gravis.com Facebook page. We asked community members there to tell us: "What do you wish others knew about myasthenia gravis?"

Here is a look at some of the valuable insights members shared.

Awareness of a rare disease

By far, the most common response was wishing for more awareness of MG. Rare diseases like MG lack the visibility of more common chronic illnesses. Doctors do not know to look for it. Loved ones – or even you – may not have heard of it before diagnosis.

"A loved one was finally diagnosed with this less than 1 year before they passed, totally downplayed by the doctor."

"No one knows or has heard of it before."

"I am newly diagnosed. I don’t even know what I should know."

"It’s such a shame it’s not that well known, and people don’t know what people are going through."

"Why won’t insurance cover [a mobility chair] for us without jumping through hoops and then denying everyone? I would actually be able to participate in life!"

Total-life impact

A myasthenia gravis diagnosis changes your life. The symptoms impact you daily. Grasping your toothbrush to brush your teeth reminds you. Trying to swallow reminds you. Facing stairs reminds you. Your muscles do not work effectively, and movement can be challenging.

"That it affects every aspect of life. There is not a moment of life that is not affected by this disease. There is not a move I make during the day that I am not reminded of my disease."

"We are trying so hard to do whatever the task is at hand without complaining."

"Planning ahead can be next to impossible because we can’t know how we’ll feel on any given day."

I am not lazy

The muscle weakness caused by MG leaves you exhausted. At times, there is so much you cannot do because you lack energy. Often, others interpret this as a sign of laziness.

They might not understand the limitations that can come with this disease. Loved ones forget about your diagnosis because symptoms are invisible. They make hurtful assumptions about your activity level.

"That it is real and not laziness or a mental condition."

"How debilitating it is on a daily basis."

"Even if I don’t look sick, I am, that I have days that I can do nothing other days I can do more."

The unpredictability

How you feel with MG changes constantly. Day to day, moment to moment, you cannot plan for your symptoms. It makes scheduling activities challenging. It disrupts your life. What is possible one day, may not be possible the next.

"I wish they could understand my pain, feelings, mood swings, up and down symptoms."

"I wish others could understand that we may feel pretty great at 10:00 am and hardly be able to function at 2:00."

"That we really did look forward and anticipated the event the MG decided we could not make it to at the last minute!"

Living with MG

Thank you. We appreciate everyone who shared responses to this prompt. Living with MG is difficult. Even when loved ones and others do not, this community understands.