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?
If you would pray harder....
You can walk so you don't need a wheelchair.
You should try........(insert latest fad going around)
You should think more positively.
Have you been to a doctor?
Hi,
Thank you for your share.
Your list definitely resonated with me... and, I imagine will also help others here feel less alone in their own experiences of hearing these same sorts of messages.Hugs,
Gina Miller,
RareDisease.net
Team Member
“Just be positive.” It doesn’t work that way. It’s not as easy as a switch like that!
Your just unique and complicated, nothing more we can do for you. This was after a major surgery for decompression of the optic nerve. Craniometaphyseal Dysplasia is a very rare genetic bone dysplasia that I was born with. Which causes my skull to be much thicker than normal. When I was loosing my hearing the ear doctor just well your going to be deaf. That was it. I walked our of the office with my husband got to the elevator and just cried. Been told I need to have a decompression of my skull, yet they don't move forward with it. Have had a neurologist tell me I don't have time to deal with your case. Even though Mayo said that I need a neurologist closer to home.
, have you been able to find a more capable neurologist closer to your home? - Warmly, Donna (team member)
Any suggestions of trying the most simple things possible, like ice, or ibuprofen, or benadryl for sleep.
As if, at nearly 60, having been ill for a decade, I would never have thought of or tried those things on my own.
That's not helpful, it's aggravating.
Oh, wow...I totally resonate with this! At 66, it's 'annoying' to receive this sort of suggestion from others... it does seem to bring with it a message that we are not capable of taking care of ourselves in such basic ways.
Thank you for mentioning this.I suppose a more welcome response would entail the additional message that the person assumes we have already tried these things and some empathy that it must feel frustrating and even scary to not have found relief...
Hugs,
Gina Miller (RareDiease.net Team Member)
