What annoying or unhelpful suggestions are you most tired of receiving (unsolicited!) from other people?
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.
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...
Gina Miller (RareDiease.net Team Member)
Thank you Donna.
Strangely I am confronted with unsolicited advice like this: “You should be more charming and friendly and not make such a strange face, then doctors and medical staff would treat you with respect and not reject you as a patient. Also, you should not focus so much on the pain and not take the pain so seriously, then the pain (caused by frequent intestinal obstructions) would not be so bad”
Okay, I have “that face” because….well, everyone has a face and maybe it’s due to my autism that I have that funny/strange face. Anyway, I don’t owe anyone an explanation for my face. And is it only Princess Charming who is legitimate for medical treatment? Do people really believe that? So it's totally okay to deny medical care to the disabled and chronically ill because they don't put on a friendly face? And pain is simply a matter of attitude? No, it is not.
Wishing you well,
RareDisesse.net Team Member