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You don’t look sick – How do you respond to that?
One of the most frustrating parts of living with myasthenia gravis (MG) is how invisible it can be. The muscle weakness, fatigue, and slurred speech aren’t always obvious to others, especially on “good” days. But that doesn’t mean we’re not struggling. When someone says, “But you don’t look sick,” it can feel invalidating, even if they mean well.
Have you heard this phrase before? How did it make you feel? Do you respond with education, humor, or just let it go? How do you help others understand the invisible nature of MG?
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12 Replies
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I used to get defensive and try to explain when someone tells me I “look good” or “don’t look sick,” but now I just say thank you and move on. If they are looking to have a real conversation about why l don’t look sick I will, but I’ve found most people are just making a thoughtless comment and saying thank you gets us past it pretty quickly
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That’s a really healthy approach. It can be exhausting to feel like you always have to explain yourself. Choosing to simply say thank you and move on is a great way to protect your energy. You’re right, most of the time, those comments aren’t intended to hurt, they’re just thoughtless. Words can easily obscure a person’s true intentions. It’s encouraging to hear how you’ve found a way that works for you to handle this. Thanks for sharing with us -Jodi, Patient Advocate
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I know that this is a major issue for many MG patients. I have actually never been told this. Probably because I mostly use a rollator and have serious walking problems.
Like many others I have been going through various MG phases and I have been isolated in hospitals or at home for a long while. Once I started to go out, though, I had gained lots of weight and had to cope with Cushing Syndrom caused by heavy prednisolon overdoses.
So people would not say that I would not look sick, but rather tell me that I should lose weight to get rid of my problems. Different issue, but same background, as the illness is not recognized as the ultimate problem. Lose weight and you will look and move better, stop sweating and become more active!
So the invisible illness would be ignored and – even worse – you would be blamed for being overweighted and too lazy. I guess I am over this today, but this experience is still hurting me.
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More often than not I smile and say, “Ha, you don’t look uninformed about Myasthenia Gravis, but I can share my experience if you have a few moments to learn.”
This has started so many great conversations, and as former educator and workplace trainer, it’s my wheelhouse.
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That’s such an unique and clever way to handle those moments. Turning a frustrating, or potentially rude, comment into an opening for education shows a lot of patience and strength. It’s great that you’ve been able to use your background as an educator to create conversations that not only clear up misconceptions but also spread awareness about MG -Jodi, Patient Advocate
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Hi Douglas, i have the same instinct in this situations, i think there is a Lot off miss informed people about autoinmune desease in general. Think about when you hear about myasthenia gravis for the first time, was probably when you have your first diagnose.
Agree great conversaciones came later with this insight.
Cheers! Happy to been this forums!
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I have not found any good way to respond to this type of comment. I have a handicap placard for my car because if can’t walk very far without taking a break. I have a rollator that I don’t use very often. I guess if I did use the rollator, I would not get the nasty comments. But people either give me a sideways look or say something like “you don’t look handicapped” when I get out of my car. I typically ignore it. I think even some family members think I am “faking” it on my bad days because I have some good days when I can make a meal or do some cleaning or go out to eat. I never know how to handle it and it has definitely taken a toll on my mental health. I have been taking prednisone for almost a year now. I am starting to wean off but had some setbacks with the weaning process. I was about 20 pounds overweight when I was diagnosed a year ago and I have gained an additional 20 pounds on top of that. I desperately want to get this weight off and that has contributed to my depression as well. I most likely will seek the help of a therapist. I am taking an anti-depressant which has helped somewhat. Thankfully, I have a very compassionate medical team.
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Thank you for sharing this. It can be so challenging when people judge you without understanding your struggles, and I completely understand how this can take a toll on you. I’m glad you have a supportive medical team and are considering help for your mental health. I find online therapy to be very manageable and MG-friendly. I use the Grow Therapy platform and recommend it because it allows you to browse and read about hundreds of available therapists. This is different from other online therapy sites, where you fill out a questionnaire and are then matched with three or so potential therapists. -Jodi, Patient Advocate
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I have been challenged a few times when using handicapped parking (with a sticker). One person was very upset and called the Sheriff. The Deputy was going to write a ticket, but I shoved him my VA Healthcare ID, Which clearly states “Service Connected”. He tore up the ticket, apologized to me and confronted the complainer. I believe he gave a ticked to the complainer for filling a false police report. Most of the time people are reasonable. I even moved my car once when the other driver, who was actually physically disabled, needed the space more than I did. I carry around an MG Wallet card put out by the Myasthenia Gravis of Illinois (www.myastheiagravis. Org) which is very helpful
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I carry a MG card in my wallet, too. I also have a medical alert necklace and a couple of bracelets and I wear one of them at all times.
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The URL for the MG Wallet card:
https://myastheniagravis.org/wp-content/uploads/2024/04/ConquerMG_WalletCard_Download.pdf
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Hi Barry, this si great i Will try to find the same for spanish
Thanks for sharing! 😉
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