A reader recently wrote in with a question. This person said she was going on vacation to visit family and friends, many of which she hadn’t seen in years. She wondered if she should tell them about her Myasthenia Gravis (MG) and whether it was better to do it beforehand or just wait until she gets there and try to explain any symptoms that may appear.
I checked several resources and am replying to her in this way:
It’s usually beneficial to tell your family and close friends beforehand, especially since these people haven’t seen you in a long time and MG symptoms like drooping eyelids, double vision, slurred speech, facial weakness, or general fatigue could suddenly appear. These symptoms can closely mimic a stroke or other serious issue, which could cause unnecessary worry, panic, or even them wanting to rush you to the ER.
Telling them in advance reduces the chance of frightening them and lets you control the narrative in a calm way. It also helps avoid awkwardness or misinterpretation during your visit. And, should you need their support in any way, they will have a better understanding of how to help you. Many people with MG find that a brief, proactive explanation builds understanding and avoids a lot of concern. It also helps avoid any confusion, because as you know, symptoms can appear one minute and be gone the next. That’s why it’s often called the “Snowflake Disease”.
Keep it simple, positive, and focused on the practical impact rather than a full medical lecture. You don’t need to share every detail. Stick to what affects you and possibly your interactions during the visit. You also don’t want to come off as a hypochondriac or a complainer. There is some important information you need to share, but the key is to frame it as “just so you’re aware” rather than a big detailed announcement. For that reason, send a short message, make a quick call, or mention it casually in a conversation a week or two before arriving.
Here are a few sample scripts you might consider using. You can easily adapt any of them to better fit your personal situation:
Short and Casual Version (e.g., via text or group chat):
“Hey everyone, I’m really looking forward to seeing you all! Just a quick heads-up: I have a condition called Myasthenia Gravis (MG). It’s an autoimmune condition where my muscles get weak or tired easily, especially later in the day or after activity. It can cause things like droopy eyelids, double vision, slurred speech, and difficulty chewing or sometimes even swallowing, but it comes and goes. That’s one of the quirks about this disease. I’m on medication and rest often helps a lot. It might look a bit like I’m tired or even like I might be having a slight stroke, but it’s not a stroke. If you notice that occurring, don’t worry, it’s just MG acting up. I might need to rest or take it easy. If I begin feeling too weak, I may even ask to sit out of some activities, but I don’t want that to stop you from enjoying yourself. Trust me, I can have just as much fun watching as I can participating. So, let’s just have the best time ever. I’m so excited to catch up. Thanks for understanding.”
A Bit More Explanatory Version (e.g., in a phone call or email):
“I’ve been managing Myasthenia Gravis for a while now. Basically, it’s like the connection between my nerves and muscles don’t always work perfectly, so muscles (especially in my face, eyes, speech and limbs) can weaken with use and improve with rest. Symptoms can flare up unpredictably, and sometimes those symptoms disappear as quickly as they came on. You might see me with a droopy eyelid or hear me becoming hoarse or slurring words. That’s normal for me and not an emergency like a stroke or a reason to get startled. I’ll probably need to pace myself, but I’m pretty good at knowing my limits. Let me know if you have any questions. I’m happy to explain more when we see each other.”
Use an Analogy (especially helpful for non-medical folks):
“Think of it like a cell phone. Sometimes your calls and internet access work just fine, but sometimes your signal is weak, or you can’t get a signal at all. This can happen when your cell network becomes overwhelmed and your signal gets interrupted. Sometimes my nerve network gets overwhelmed, or the signals are weak or don’t quite make it to my muscles. That’s why I can look okay one moment and struggle the next.”
Just remember to tailor it to your comfort level. You can add that you’re stable overall, on treatment, or whatever feels true to you. Many patients recommend carrying an “MG emergency card” or wearing some type of medical ID jewelry with your diagnosis, medications (and ones to avoid), and your neurologist’s contact info, just in case symptoms worsen and someone needs to help you seek care.
And, if you prefer to keep it to yourself and not mention it unless symptoms appear, that’s okay, too. This method may work if your symptoms are usually mild, well-controlled, or rarely apparent to others. It’s also appropriate if you value privacy. Should you run into symptoms that pop up unexpectedly, you could always say something brief and reassuring like: “This is from my Myasthenia Gravis. My muscles just get tired. Nothing to worry about. I just need a short rest and it’ll improve.” If appropriate, you can explain or offer more details once you feel better. I should warn, however, there is a downside to this method. A sudden visible change like slurred speech or drooping eyelids can spark worry or confusion, particularly with family and friends who care about you and haven’t seen you recently. Explaining on the spot might feel more stressful if everyone is already reacting.
If travel or gatherings tend to worsen your symptoms, chat with your neurologist ahead of time about any adjustments to your plan (meds, rest strategies, etc.).
To my friend who asked this question, safe travels, and I hope this helped. I pray your visit is enjoyable and low-stress. Remember to stay strong!
#MGStrong!
Please share your comments here