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What Not to Say to Someone with MG

These are variations on things people have actually said to me, in my real life. Please, for the love of all you hold dear, don’t say these things to anyone with myasthenia gravis (MG).

More exercise

"You just need to get more exercise!" I’m weak because of a dysfunction at my neuromuscular junction. Too much exercise makes it worse. I’ve already tried and failed the exercise-until-you-end-up-in-the-hospital plan, before I was diagnosed, and thought weakening muscles meant I just needed to try a little harder at the gym.

"Okay, but have you tried yoga?" When are people going to stop treating yoga like it’s a panacea? As it happens, I have tried yoga, and while there were things I liked about it, there was also a lot I couldn’t do. Like, for example, keep up with the class. Nothing makes you feel vibrant and healthy like being pitied by people older and more limber than you.

Comments about weight and medicine

"Do you really need all that medicine?" Yep. Yep I do. You know what I also need? The thousands upon thousands of dollars I’ve had to spend on it, but having a functioning body turns out to be more important than financial solvency. Also can we talk about all the side effects I’d be free of if I didn’t need this medicine? Especially the really noticeable ones like potbelly and moon face. Which leads me right to ...

"You’ve, uh, put on a little weight." Weight gain is almost inevitable when you’re on prednisone, as many MG-ers are, and can’t exercise like you used to. Even if you don’t gain a pound, prednisone changes change where your body stores fat. I weigh less now than I did before MG, and my waist is 4 inches bigger. (Also nobody’s weight is any of your business unless they’ve asked for your opinion.)

Unsolicited advice

"What really helped [me/my friend] with [chronic illness] is MLM Brand supplements/essential oils, going paleo/vegan/organic/gluten-free etc." It’s great that it helped you. Or your friend. Or cousin. Or brother-in-law’s mother.

Those things are expensive, time and energy consuming, unproven, and hard to stick to, or all 4; I already have limited time, resources, and energy. And that’s a sample size of one. It’s bad science to assume that something that works for one person will work for everyone.

"Couldn’t it just be that you ..." Nope. I didn’t overdo it at the store, I wasn’t clenching my jaw, and I didn’t spend too much time on the computer, or any of the other things you think are my problem. And even if I did, none of those things caused my weak legs, slurred speech, double vision, difficulty holding my head up, or other MG symptoms.

"You know if you use a [wheelchair/cane/crutches] you’ll just become dependent on it." I am dependent on my mobility aids — for freedom and the ability to do things and go places I wouldn’t without them. They are inconvenient to transport and use; the minute I don’t need them, I stop using them.

Making assumptions

"Well at least you don’t have [XYZ]." A. You don’t know that I don’t also have another illness - autoimmune diseases like to travel in packs. B. While I’m glad I don’t have cancer or ALS or MS or a spinal cord injury, for example, living with a chronic illness or disability is not a contest.

In fact, sometimes having a rare disease that’s hard to diagnose and treat is more challenging than having something common and well-known.

"This thing I read on the internet says it’s not painful." You know how when you go to the gym and work out extra hard your muscles end up sore and achy the next day? That’s what it feels like for me. I’m overusing stronger muscles to compensate for the ones MG makes weak, and I’m forcing those weak muscles to function as much as possible anyway.

"But it said you can lead a normal life." People who achieve a complete remission are rare. More people achieve a medical remission, which means they have to stay on immune suppressant and other medications to stay symptom-free.

Others do reasonably well but still have daily symptoms despite medication and have to be very careful with their energy. And then there are people like me who have refractory MG that doesn’t respond well to treatment. I can lead a happy life, but it’s nothing like it was before MG.

Unhelpful comparisons

"But yesterday you could walk/eat/go out just fine." That’s how MG works. It’s a fluctuating weakness that can change from day to day, hour to hour, moment to moment even. I have walked onto an airplane and needed to be wheeled off it. Changed my bedsheets and then been in an ambulance within the hour.

"My [insert relation] has MG and it just makes their eyelid droopy." There’s a reason they call MG the snowflake disease. No 2 cases are alike. I have severe weakness in my hips and my speech slurs when I’m fatigued. My friend has trouble swallowing and double vision all the time. We both have MG. (And droopy eyelids.)

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