What is the most annoying unsolicited advice you've heard?
What annoying or unhelpful suggestions are you most tired of receiving (unsolicited!) from other people?
I have hypermobile Ehlers-Danlos syndrome, we are lacking a protein in our collagen. People suggest taking collgen supplements .........ugh!
"Just go to the gym, you don't need PT, you just need muscle tone", I have GBS...
. welcome, we're glad you found us!
That's incredibly frustrating, sadly part of having an "invisible illness." Do you try to educate people, or do you find them resistant to understanding? - Warmly, Donna (Team Member)
There HAS to be something they can do.. or There HAS to be a cure.
Not everything has a cure and not everything can be fixed. The worst is hearing it from a family member who won't even research what it is you have, much less listen to what you are telling them about it., yes! I agree with your entire comment. Why is it so hard for people to understand that sometimes, there IS no cure or there's nothing more that can be done right now? And, yes, when family and friends are the ones putting no effort into learning about your condition, that cuts even deeper.
Please know that at least in this space, you will never have to be subjected to comments like those.
Best, Erin, Team Member..... thank you so much. I love this place. Everyone needs a space (I have my own forum just for that, if interested dm me for the website) where they can go and not be hounded by the minds of simple people who don't care enough to get to know your disease but only enough to tell you that you are wrong about it. I've had more than one person in my 20+ years of battling this, tell me how wrong I am and how much (little) they know about it. They know so much yet have never even heard of it. I guess you just gotta deal with the "simply idiot" people to get to the good ones.
Thanks again for your kind words ....
Change my diet to vegetarian and do yoga🙄
I do not play poker for a reason. It shows on my face all my emotions. So usually they stop mid dissertation on diet and yoga.yes the ones who really dont matter acts like im faking it even in the hospital having plasmapheresis done. If they wasnt related I would cut all ties. And probably will when my last patent who is ill also passes away. I will. I cant keep the negativity beating on me all the time. I honestly expect them to cut ties too. Especially when they find out that my dad changed his will years ago. They really won't be happy then. , not that you need my approval, but I fully support you doing what you need to do to protect your mental health and well being. And, if cutting people out of your life is the best choice, you go ahead and do it when the time is right!
Best, Erin, Team member.
