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How do you handle unsolicited advice about MG?

Have you ever received unsolicited advice about your MG? If so, what was the advice and how did you respond?

  1. This is a difficult thing for sure because we all know most people mean well. It's also difficult when someone has specific experience in that condition and they're just trying to help. I have a friend who has a condition that I also have (not MG) and I'm also a specialist HCP in that condition, my job is literally giving advice half the time, I'm also astutely aware of how annoying unsolicited advice can be. We have a system where if she or I are having a difficult time we basically say whether we want the advice or not. Or if it's unclear I will say 'do you want my sympathy or my advice ' (obviously less abruptly than that).

    Try and remember that they all mean well and most of the time comes from a place of love but starting a conversation about giving advice and how that's communicated between you might be helpful. An example being just saying somethibg like ' sometimes I just want some sympathy, because sometimes that is all we need, we don't need 'fixing' we just was some TLC, sometimes we want advice ....' and go from there . To be fair to the other person we can't expect them to be psychic and know that, so communicating that to them is only going to be helpful.

    Strangers is a whole different ball game , I have no idea how to deal with strangers unsolicited advice. I tend to just be polite and think I'm never going to see this person again.

    1. As for me I think I always receive unwanted advice when it comes to my MG. The advice normally comes from my family (parents, aunts and uncles). I'm a stay-at-home mom and sometimes I put my health on the back burner (I prioritize my kids) when it comes to taking care of my kids and the house. I also get what they're saying, "you need to put you first because if something happens to you. Who will take care of the kids?" I don't want to be rude, so I do listen to what they have to say. I've learned to listen, that way they feel heard but to also do what works for me and my household. I say, "Thank you for the advice. When I take care of XY, and Z I'll consider what you've said." It doesn't bother me because it lets me know that my family does care about me. - Jazmin (MG team member)

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