responding to comments about myasthenia gravis

I Wish I Had Said …

Everyone has those moments. You are surprised by a comment. It could be from a stranger or a close acquaintance. They say something about your visible symptoms or limitations. Or they give unsolicited advice. There is seldom bad intent; just a failure to understand.

You react. You may snap back. But more often most people change the subject or walk away. When you have an obscure or invisible disability you become accustomed to being misunderstood. But that doesn’t mean it doesn’t hurt - or at least grate on a person who struggles with a condition 24/7. Hours or days later you are still rehashing the encounter in your mind… "I wish I had said ..."

Learning opportunities

If you have visible signs of a condition - a broken leg or a rash - the conversation is simple. If your voice is slurred, your vision double, or your balance is a bit off, the people you encounter may assume they know something they don’t.

People usually try not to "make a big thing" out of a remark. But in the larger sense, these are missed opportunities. Almost everyone can learn, and if you have a thoughtful response ready, you might just start a learning experience that will last far beyond the moment.

Finding the middle ground

Of course, there’s always the option of a full explanation. Do you have an extra hour? Anything less is likely to create misconceptions. And spending time on how you feel, rather than the biochemistry of antibody-antigen reactions and muscle twitches, is likely to become confrontational.

But there is certainly a middle ground. My hubby and I have had far too many times like these. The examples below are real. We can assure you that, "These are the symptoms of myasthenia gravis" just doesn’t work.

It will almost always provoke a laugh, a crazy look, or "Myastootia what?" So join a patient and advocate in a little practice. Before you read my suggested responses to each of these situations, stop reading and formulate your own. We may all learn from one another’s suggestions.

Needing a seat in the airport

Scene 1: The Airport

Hubby had a mild case of aspiration pneumonia, although he didn't know it yet. He asked for a wheelchair at the airport, but it didn’t show in time. So I helped him down the concourse. We barely made it.

He grabbed the only available seat while I go to the gate agent to tell him we need a bit of help. I returned to find a mature woman telling my husband he has to get up as that seat belongs to her teen son who went to get a snack. What would you have said?

When people make assumptions

Scene 2: The Airport Again

The plane took off and landed. This time we got the wheelchair to the shuttle bus. Hubby was way beyond tired and his voice was slurred. Three teens across the aisle began to giggle.

"He’s drunk." They continued giggling all the way to the rental car office. Should I have used my (retired) teacher voice or just ignored it?

When others try to help

Scene 3: The Store

We were in the grocery line when I discovered I’d missed something. Hubby held our place. In the few minutes was gone he got what we call "The Flop." His legs just gave out and he fell.  (MG folks will recognize that problem.)

When I came back 2 guys were trying to get him up and he was trying to discourage them. I had to argue: "No, don’t call 911."

When dismissed by doctors

Scene 4: The Hospital

Hubby was in the hospital with his diagnosis still unconfirmed. His eye doctor had suggested that they test for myasthenia gravis but the antibody scans were negative.

The third year resident "hospitalist" said to us: "If he had that he’d be dead by now." I was stunned into (very uncharacteristic) silence.

How would you have reacted?

Have you indulged yourself with your first instinctive response? I do that a lot in my mind. But then I stifle it. I want to support and teach the world a bit. I am trying to build a repertoire of "better self" responses. Here’s my short list for the examples above:

"I know you’ll understand that he needs the seat much more right now. Your son will benefit from understanding that too."

"I know it’s not visible, but he has a medical condition which causes these symptoms. You might have a need like that sometime in the future."

"Thanks, sincerely, but grabbing that wheelchair over there would be more helpful."

"I realize you are the medical expert, but we have advice, research, and a medical history that you might want to look at."

Hindsight is always clearer than our perceptions in the heat of an uncomfortable moment. But of course, foresight is better. I’m practicing my kind-but-pointed comebacks. You too?

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