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They just went to the cinema. But the theater was way too hot. When they left, he couldn’t even hold his head up. He couldn’t speak. And he certainly couldn’t walk.

“Luckily I had my wheelchair,” says Zach McCallum. “But I was a mess.”

McCallum, 55, was diagnosed with myasthenia gravis (MG) in 2015. Since then he has spoken a lot about his condition. But he felt “really embarrassed” that day. It was early in his illness and he didn’t want his sister to see him like that.

She then gave him a message that stuck with him and is sharing with others in the MG community: Hiding this doesn’t help your friends and family.

“It helps if you’re honest about what you live with,” says McCallum.

If you’ve been diagnosed with MG, here are some tips on how to talk to your loved ones.

How to get the conversation going

MG is a rare neuromuscular disease. If your experience is similar to McCallum’s, chances are most of the people you speak to have never heard of it. It is also a disease that cannot be seen from the outside. This can make it difficult for friends and family to understand what you are going through.

“It’s a different story when you’ve lost a limb,” says Amit Sachdev, MD, assistant professor and director of the Department of Neuromuscular Medicine at Michigan State University. “But myasthenia gravis is about fatigue and weakness.”

Families can sometimes have a hard time understanding why someone who looks good can’t get up and do the dishes or need help in the bathroom, Sachdev says. But you might see things a little clearer if you explain some medical stuff.

Tell your friends and family that you have an autoimmune disease. Your immune system attacks certain muscle receptors faster than your body can create new ones. This extra inflammation “blocks the nerves from talking to the muscles,” Sachdev says.

With MG, this often affects how you move your eyes, mouth, arms, legs, or breathing muscles.

A not-so-scientific analogy may also help get your point across. McCallum likens MG to a radio station and a television or radio set.

Your nerves send out a signal to “raise your arm or raise your leg,” McCallum says. “But little idiots have been running around in the bloodstream destroying people’s handsets. Now the muscles don’t get the signal… and the more you use your muscles, the more receivers get blocked.”

If you would like more information about your condition, please submit it to the Myasthenia Gravis Foundation of America website.

Go through your everyday life with MG

Richard Nowak, MD, director of the Yale Myasthenia Gravis Clinic, says your first conversation with loved ones will be different depending on where you are in your disease process. Your symptoms may change or be easier to control as you decide on the best treatment plan, he says.

But whether you’ve just been diagnosed or have been living with MG for a while, let your friends and family know which symptoms are having a major impact on your daily life.

For example, double vision or drooping eyelids can make driving or reading difficult. As you learn to use your MG, Nowak says you may need help getting to your doctor’s appointments, picking up your prescriptions, or going to the grocery store. And tell those close to you that it’s common for some of your symptoms to come and go.

You may feel perfectly fine in the morning, Nowak says, but by midday, afternoon, or early evening you may have trouble keeping your eyelids open or speaking. This change might confuse your friends and family if they don’t know what to expect.

“Sometimes people say with slurred speech, ‘Did you get enough rest or were you drinking?'” says Nowak. “It can very easily be misinterpreted as something else when it isn’t.”

Some MG symptoms can be serious. Tell your loved ones to watch out for shortness of breath or difficulty swallowing. You should seek medical help immediately if you have trouble breathing.

produce long-term symptoms

Medications and other therapies can be of great help to the majority of people with MG.

“We can treat most patients with no or minimal symptoms that don’t necessarily interfere with their daily activities,” says Nowak.

But the treatment is not a panacea for everyone. McCallum has a refractory form of the disease. Fast-acting medications help with some of its symptoms. But he still has a lot of weakness, especially in his legs. For longer distances he uses a wheelchair or other aids.

“I can walk around the house,” says McCallum. “When I use my forearm crutches, I can walk 40 feet before having to stop or I fall. That is my limit.”

In addition to tired muscles, McCallum gets a lot of general fatigue and brain fog. He says those close to him know how to spot the signs he needs to rest.

“When I’m at the grocery store with my friends and we’re looking at a bunch of grapes and I’m like, ‘Oh yeah, let’s get some ‘pearls,'” says McCallum. “It’s not because I don’t know the word for grapes that I suddenly have aphasia. It’s like my brain just thought, ‘I’m too tired to find the right word, so I’ll just pick one.’”

Explain what life with MG feels like

Nobody can ever know exactly how you feel. But there might be some tests that can give people a little idea of ​​what some of your symptoms look like.

“There are computer screens that simulate what double vision looks like,” says McCallum. “Or you can say, ‘Strap a 10-pound weight on each wrist and do whatever you have to do now.'”

Sachdev says finding the right example is difficult. But you can tell someone without an MG to remember how weak and tired they feel after a really hard workout or a long run.

“Think about how much effort it took to get to this point,” says Sachdev. “Now think about your daily activities that lead you to this point.”

How to show support for someone with MG

McCallum lives alone, but he worked with an ADA-compliant designer to transform his living space. His kitchen and bathroom are now wheelchair accessible and he has installed a stair lift. These are the kinds of adaptive changes you should think about if you live with someone who has MG.

As a friend or family member, you can also lend a hand with everyday things. McCallum’s buddies can do a load of laundry or clean up his dishes. And they show that they care in a subtle way.

“Often they’re just doing little thoughtful things like, ‘I saw this gripping tool and thought you’d find it useful,’ or ‘I read this interesting article on how the immune system works and was wondering what you’re thinking about.”

If you have MG, McCallum says to tell your friends and family if they aren’t helpful. Give them a chance to change for the better. But “when you come out of a conversation with someone and you’re like, ‘Well, maybe I just really need to try a little harder. Maybe I’m just a little lazy, then that’s not a good friend. That’s not someone you want to be with.”

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