Real Talk About MG

The information provided here is for educational purposes only and does not substitute for professional medical advice. The content reflects the expertise of the author and is not necessarily the opinion, views, or recommendations of the MGFA. Please consult with your doctor and healthcare professionals for specific recommendations and advice pertaining to your healthcare/treatment.

Chances are when you were diagnosed with myasthenia gravis, your doctor explained it to you from a scientific standpoint. She told you about autoimmune diseases, and how the immune system can make a mistake and start attacking your own body. She explained that in MG those autoantibodies were attacking your neuromuscular junction, causing your muscle weakness, drooping eyelids, and/or double vision.

Maybe you didn’t care a whole lot – you just wanted your doctor to treat you and make you better. Or maybe you were like me and wanted the science down to the molecule. Either way, you probably had to learn at least a little of what myasthenia gravis is and how it works.

But how do you explain it to other people?

How do you tell close friends and family, what do you say to acquaintances, and what do you say to total strangers? What about employers or people from whom you might need assistance when you’re out and about? What do you tell medical professionals who aren’t familiar with this rare disease? How do you describe it to a child or someone else who needs a simplified explanation? 

I’m lucky – I actually enjoy explaining science and medicine to people. But that doesn’t mean I always want to. Sometimes I want to share a sentence or two and call it good. To do so, I have developed a mental library of explainers I can reach for quickly. Even when I want to talk about my MG with someone, it’s helpful to have a starting-off point.

The Basics

This is the basic explanation I give when I’m talking to anyone new:

“I have a rare muscle disease called myasthenia gravis. It’s an autoimmune disease, like lupus or rheumatoid arthritis. It makes it hard for my muscles to receive signals from my nerves. The more I use some muscles, the weaker they get as I’m using them. If I rest, they will recover some strength. For example, if I start slurring my words as we talk, I just need to be quiet and let someone else do the talking for a bit while my speech muscles rest.”

If they have questions or seem confused by that, or I want to be more detailed, I’ll use this analogy:

“Imagine that your nerves are radio stations broadcasting instruction signals, and on your muscles there are dozens of radio receivers. But there’s a part of your immune system that’s confused and thinks radios are dangerous, so the immune system smashes a lot of those receivers. The signal is being broadcast—”raise your arm,” for example—because there’s nothing wrong with the nerves. But a lot of the muscle fibers never get the signal because their radios are smashed. As a result, you can’t raise your arm as much or for as long as you want to. The more you use a muscle, the more radios get smashed, so the weaker you get. If you rest some of those broken radios will get replaced by working ones.”

That’s my starting point for explaining what MG is. Then there’s the question of how it affects me and what I need from people around me.

Close Family and Friends

These are the people I want to truly understand what MG does to me. I need my friend to understand why I had to cancel my plans with her at the last minute. I want my sister to know when she can go ahead and worry, and when she can relax. I want my bestie to be able to explain what’s going on with me when I can’t speak for myself.

For them I’ll talk specifically about how I’m feeling and how that can change so much from day to day, even hour to hour. How it’s like my body is a cell phone with a bad battery that can go from an 80% charge to 5% and about to shut down in less than an hour.

I’ll talk about what I have to do to participate in something that I know will be taxing for me. I explain that I need to rest all day before going to dinner and a birthday party, and then plan to rest all day afterwards, too. How I have to prioritize the things I really want to get done and make sure I have the reserves to do them. Why I don’t always fold my laundry, or why I order so much takeout and grocery delivery, for example.

I’ll tell them about the things I know will make my MG worse. For me, that’s being in an overly warm environment, getting sick with a cold or other acute illness, and not getting enough sleep. I tell them that’s why I keep my house so cool year-round that I keep hoodies on hand for visitors. It’s why if they have been sick or been around someone sick, especially if a family member has been sick recently, I need to keep my distance. It’s why I can’t go out after the movie for a midnight donut run.

I’ll also tell them about what can help. I might need to go outside and sit in the cool air for a bit. I can’t walk and talk at the same time, but if we sit down, we can continue our conversation. I can take my Mestinon, and in 20 minutes (or less if I chew the tablet or take the liquid version) I will start to improve, so we just have to wait it out.

I have an autoimmune disease called myasthenia gravis that makes my muscles weak when I use them. It’s better some days and worse others, and it’s hard to predict.

Acquaintances

I don’t need my friendly neighbor across the way to understand much more than that I have a disabling chronic illness that waxes and wanes, and why sometimes I’m in a wheelchair or using crutches when I go to get my mail. For an acquaintance I’ll give an abbreviated explanation:

“I have an autoimmune disease called myasthenia gravis that makes my muscles weak when I use them. It’s better some days and worse others, and it’s hard to predict.”

That’s usually enough. These are the people most apt to suggest I just need to exercise more, try yoga, change my diet, take a specific supplement, or pray my MG away. That can be hard to deal with. Usually, I tell them I appreciate their concern and I’ll consider it, or I appreciate their prayers. It might be a white lie, but it’s better than getting into a discussion about their unsolicited advice.

Strangers

The curious, older man in the waiting room with me at the dentist, who asks why I’m in a wheelchair, doesn’t need more than a very brief explanation. This is when I’m likely to trot out the simplest possible description. I’ll say, “I have a rare muscle disease. It’s sort of like muscular dystrophy.”

Almost everyone has heard of muscular dystrophy, and “rare” and “muscle disease” are basic enough terms that anyone should be able to form an understanding of it. If I want to expand on it, I’ll say, “It makes my muscles weaker the more I use them, but when I rest, I’m able to recover.” 

Strangers are also most apt to give me a disapproving look if I stand up from my wheelchair, or if I park in the handicapped spot and get out and walk into the store. If they confront me, I tell them I have a rare muscle disease, or that not all wheelchair users are paralyzed, or that not all disabilities are visible.

I’ve had to learn to be direct when asking for what I need.

Asking for What I Need

I’ve had to learn to be direct when asking for what I need.

“I have to have a wheelchair-accessible room at the hotel,” for example. Or, “I need to be able to take breaks and rest seated several times a day.”

With an employer I might need to have documentation from my doctor explaining what accommodations I need.

I’ve gotten a lot better at asking random strangers for help, too. Like asking them to open a door for me or get something down from a high shelf. I’ve also learned to ignore judgmental looks, like when I’m taking a long time to cross the street, or my half-mast eyelids are making me look dopey or intoxicated. It doesn’t matter what some stranger thinks of me. If they need to know what’s going on with me, I will tell them.

Emergency Medical Help and Medical Professionals

There are a few very important things I try to impress on first responders when I need their help.

• Oxygen saturation is not a good measure of respiratory status for someone with MG.
• I am immunocompromised.
• My muscles are weak.
• My eyes are closed or my speech slurred because of muscle weakness, not sleepiness or intoxication.

Handing them this information in printed form – for example, the brochure from the MGFA on Emergency Management of MG – is very helpful.

For medical professionals who aren’t familiar with myasthenia gravis, I’ll give the short explanation, along with a description of what it does to me:

“Myasthenia gravis is an autoimmune disease that affects the neuromuscular junction. It makes my muscles weak as I use them. I can’t hold my mouth open for dental work without a bite block. When I am in an MG flare, the disease affects the muscles closest to my body—hips and shoulders—more than hands and feet. I have difficulty walking, holding my head up, sitting upright, speaking, swallowing, and breathing.” 

I also make it a point to press on staff in the hospital that pyridostigmine (Mestinon) has a very short duration of action, meaning it wears off quickly. It must be given as close to on time as possible—for me that’s every four hours—or my symptoms can get worse very quickly.

Children and People Who Need a Simplified Explanation

My father has early dementia, and although he remembers that I have some kind of health condition, he can no longer remember what it is or what it does to me. For him I will explain that I have a long-term health condition that makes my muscles weak the more I use them.

That’s the sort of explanation I also give my young niece and nephew. “I use a wheelchair because I have a disease that makes my legs weak, and I want to be able to go places with you.” Or, “I can’t keep playing catch, because my muscles are too worn out, but we could read a book together.” 

Finally

It can seem like a lot, having to explain myasthenia gravis every time you interact with someone new. Unfortunately, with a rare disease like MG, it’s unavoidable. A simple explanation is usually enough for most circumstances, and if you can memorize a clear, easy-to-understand explanation of what it is and how it affects you, you’ll find it gets easier to handle those introductions and interactions.

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