Dealing with MG Weakness and Misconceptions
There is a misconception that if our legs are weak from myasthenia gravis (MG), all we have to do is quit being lazy and exercise! People wonder, "Why do you need to rest so much? Why do you need a wheelchair? There’s nothing wrong with your legs. Why are you parking in a handicapped spot? You are perfectly capable of walking."
What you can't see
Since my diagnosis, I’ve learned just how intolerant some people can be. But, we know things aren’t always as they seem. Though I’ve always tried to be tolerant of others, I have become even more tolerant of others and of what I can’t see.
We can’t see that you cleaned house this morning and you’re tired. We can’t see that you are trying to be strong and fulfill your role in society and at home. We can’t see that you can’t always shop for food like you used to.
We can see that you parked in a handicapped spot and walked into the store like nothing was wrong with you. We don’t see how you’re hiding your pain and exhaustion. I’m in that same boat.
I’ve seen the looks and the stares as I drive our vehicle and my husband brings my powerchair to me. I see those eyes of doubt from others as I stand up and step on the step stool to get back into the vehicle, moving my legs as if there’s little wrong with them.
I can usually move my legs without a lot of difficulty, unless I'm in a lot of pain. Even when the pain is really bad, I try not to allow others to see it.
MG is difficult to understand
Some people, including family, have been after me to work my way through the pain and weakness. They want to help and encourage me to persevere, but they still don’t understand the MG weakness. It is difficult to understand what you can’t see, feel, hear, or smell.
When I was working for a particular company, which was associated with the medical field, I was nearly fired because I had to take breaks in the afternoon. My ptosis and double vision created many challenges for me.
That said, I was on salary, I could determine about 30 percent of my required working hours, and I got my work done on time and done correctly. Yet, they felt like I was not fulfilling my duties!
They didn’t see the extra hours I put in when all I wanted to do was rest. They didn’t see how hard I was working for hours on end and that I sometimes had trouble reading due to double vision. All they knew was that I had a medical problem and needed a nap about 2 PM most days.
Thankfully, my supervisor wanted to keep me and she pointed out to them why it would be in the best interest of the company to do so. That’s just another example of other’s misconceptions of what we can and can’t do.
We all have our own private battles to fight. We can also learn to accept other’s misconception of us.
One thing for sure is, we all need to stay active and exercise based on our ability and endurance. We may not be able to beat this disease, but we sure can keep it from beating us!
Have you made any MG-friendly adaptations to your home?