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What’s the biggest MG myth you’ve had to bust?
From “You don’t look sick” to “You were fine yesterday,” there are a lot of myths and misunderstandings about Myasthenia Gravis.
What’s one MG misconception or myth you’ve had to correct over-and-over?
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10 Replies
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It is hard for others to understand that this type of fatigue is different from just being very tired. It is not being lazy. It is very frustrating to not have the energy I once did. On good days, I wear myself out trying to do all the things that need to be done.
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It is so true that MG fatigue deserves its own category. It’s not just tiredness, it’s physical and mental exhaustion. And it’s frustrating when others don’t see that. Pacing yourself on the good days is so hard, especially when there’s so much you want to get done. You’re not alone in feeling this way. -Jodi, Patient Advocate
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If your muscles are weak, you just need to exercise. I hear that a lot from family. It is hard for people to grasp that muscle strength isn’t the issue. I still haven’t found a good way to explain it.
Also the have you tried ones are annoying. Have you tried yoga and whatever supplement is popular at the moment are the worst.
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I’m tired of this attitude from so many people.Even people whom I’ve met for the first time will give advice on how to get better with natural remedies, exercise etc. worse of all are those who say “have faith God will heal you.” I’m on a myasthenia Gravis WhatsApp support group in my country. This is where I see the most references to God curing us and getting us into remission. I don’t Think that such people realise the import of such statements. It’s as if we’re ill because we have no faith. I saw a lot of this when my wife and I were hospitalized with covid. People died. And it had nothing to do with their lack of faith. Awareness of Myasthenia Gravis is terribly lacking beginning with the medical fraternity.
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I agree that how to deal with fatigue is the toughest misconception. Frequently I have to decline evening invitations and bow out of evening obligations because I know I will not have the stamina to remain standing after 7 pm. Inevitably, the asker will say, “Just take a nap and jpin us later,” not understanding that although a nap may allow me to regain consciousness, it does not restore my strength; it takes 8 or 10 hours of sleep to restore energy.
Second is the expectation that I should be able to take on mental tasks (making plans, telephone calls, writing lists and letters) because I can do them sitting down! Others don’t seem able to understand that my fatigue is not only physical. My difficulty stringing words together is not cognitive decline, it’s another dimension of the disease that comes and goes depending upon my restorative ability.
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I know many of us can relate. MG fatigue isn’t something a quick nap can fix, and the mental toll is just as real as the physical. You explained it perfectly. -Jodi, Patient Advocate
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Ty this actually makes me feel better. I’m actually still working. But my brain fog when words are lost is so difficult. And the exhaustion. Soooo many people say try the gym. Not understanding it has nothing to do with weak muscles when I’m completely exhausted. I’m fortunate to still have a pretty strong body.
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The exhaustion and brain fog that few understand is a very frustrating experience. It’s wonderful that you’re still working and staying strong physically, but that doesn’t make the invisible symptoms any less real. We’re here for you! -Jodi, Patient Advocate
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I find that drug list is not correct or at least not one size fits all and even the things they tell you to avoid aren’t always true. Things not on there have knocked me for a loop. They make you feel one warm bath or a gin and tonic will affect you. It Depends. I think there are many misconceptions around what we can and can’t do. Some of this is espoused by people who are severely affected which I understand. But to tell all MG patients to avoid this or that is not right.
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Due to high doses of prednisolon I showed clear symptoms of the so called cushing syndrome, such as a round face, a fatty hump between the shoulders and I gained a lot of weight. These symptoms in combination with MG fatigue would make people feel entitled to give me the advice to lose weight and to exercise more. Of course this may be reasonable advice in general, but for me it felt like an absurd misunderstanding of my health problems. It all seemed to be about the stereotype of being too fat and too tired (or even lazy).
I had to learn patience and serenity and to focus on myself. That was a hard lesson to learn. It took almost two years since diagnosis to scale down medication, especially prednisolon/cortisol and find the right level of physical exercise, always aware that we need to compromise and to liaise with health professional and other patients just like you…
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