explaining myasthenia gravis

MG Symptoms: I Shouldn't Need to Explain Myself

I have found that when it comes to describing myasthenia gravis (MG), there is no one good explanation for every person. Just like everyone with MG experiences symptoms differently, everyone learns in different ways based on their own perception, understanding, compassion, and capability of learning.

True compassion

If someone truly cares about me, they will observe my symptoms and no other explanation is needed. They should be able see my fatigue. In my opinion, no otherwise healthy person goes through the sudden changes that someone with MG fatigue experiences. If I'm already in that state, more fatigue just makes the symptoms more noticeable.

A change in demeanor when my fatigue hits

When my fatigue starts setting in, I experience things such:

  • Eyelid sagging
  • Speech changes
  • Constantly clearing of my throat
  • Difficulty moving my arms or legs
  • Trouble breathing (almost gasping for air)

When this happens, my whole demeanor goes to a more somber state no matter how cheery and happy I try to be. I have lived with these symptoms for most of my life, but no matter how mentally prepared I am for the ups and downs of MG, the change in symptoms always seems to take me by surprise, like I'm totally unprepared.

It always seems that I have to take a few minutes and get my head screwed on straight to mentally deal with the physical change. I would rather laugh at myself for some of these changes then be hurt by a comment from others. But I need to keep a clear enough head to know if I'm going into crisis, which is not a laughing matter!

Close family and friends know what I need

My close friends and family members know I recover with rest. When my kids were under the age of 12, they would actually tell me to go take a nap or that I needed to lay down. Sometimes they noticed my symptoms before I even did.

While my children haven't been around to do that much anymore, my husband still does, along with a few of my grandchildren. All of them will ask if I have taken my Mestinon.

I shouldn't need to explain myself

My point is, no one with something like cancer or host of other better-known conditions, need to explain themselves. They don't need to explain why they are not going and doing things that they use to, why they need more rest at times, or why they need help. People living with myasthenia gravis have a major health issue that can be life threatening. That should be the end of the subject.

If my family or friends truly do care for me in the ways they say they do, they should also care to learn about MG. Ask me questions and hear short explanations of what I go through, versus me trying to give a full speech. I'm trying to get in all the information that I can or come up with some cliche so they can understand and hopefully they could relate to.

It is exhausting explaining what it's like to have MG

Trying to explain what it's like living with MG is mentally, physically, and emotionally exhausting! It also feels like the more I try and explain, the less people listen. By the way, this even includes going to a doctor's office. Medical professional are supposed to be there for any health-related issues. But it seems many don't have a clue or care to know about myasthenia gravis.

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