Yesterday, I went and had my hair done for the first time since surgery (8 weeks). I told the lady doing it (not my normal one) that I had brain surgery and that if she could be careful with the scar and my head. When she looked at the scar, she asked what it was from. I told her I had surgery for Chiari Malformation...she went on to tell me that her little brother at 18 months had had the surgery also...AWESOME! I have someone I can talk to in this small town! Well her aunt (who should know better) also was working there...comes and gawks at my scar....OK no big deal... few minutes later the aunt says to me..."Well yours must not have been servere if they are just fixing it now" (YUP just cause I am in my thirties, and it was found later it wasn't severe.) Then she asked if I had any symptoms still. I said I still get pressure headaches and migraines, and that I am still adjusting to my new brain... She then said.. "I bet those are just phantom headaches." (YUP...I am making them up.) Finally she said, "Well you must feel better because your coloring is so good!" (YUP...my face isn't pale so I am symptom free..YIPPEE)
I really was floored! Since she knew someone who had Chiari, I thought she would have been a little bit more educated...apparently not. I tried to tell her how it really was for me, but nada. It went in one ear and out the other!
So I guess is what can we do when someone makes comments like this!?!?!
Emmaline very true...I really like that saying. I guess I deal by venting to the wonderful people on this site! :)
LOL i am not surprised. Peoples ignorance is unbelieveable. My own family tried to dismiss everything saying the headaches had to be from my family and from school stresses. Then my mom even tried to say that it all had to do with the navy nothing else. Even now post surgery with the syrinx's and the migraines i am still getting my dad says I'm just the worst whinner. WTF. I wanted to tell him he was more than welcome to deal with it all and I would be happy to give it all up in a heart beat..
I often have to remind myself that people VERY OFTEN want to believe what they want to believe because of their own agendas. I've explained to some members of the family repeatedly how we've tried everything with our 13 yr old daughter to avoid surgery but it hasn't helped and the only thing that's undeniably still there is a worsening CM and CSF flow. AND STILL these people (you know, family, the ones that claim to really care) still say her symptoms may be due to eating so well (yeah, they claim it may be too stressful and I should try Taco Bell) and our harmony at home (they think teenagers should yell at, be angry and hateful towards their parents. To not be that way is odd).
So, I stop to remind myself, whether it's family or otherwise, that I don't need these people to understand. I'd like them to and I explain things to try to educate...usually though the discussion ends with me saying: "well, think what you want to think. How bout you just talk more about you?"
I have read your post and still have not come up with an answer. This bugs me because all of us at one time or another have to answer some person(s) stupid questions or they hideously and insanely stupid remark. Right now all I can do if offer you the solace that all of will have to or have had to deal with situations like this before.
I am usually a non-confrontational person and I would have really liked to have a few words with this individual.
Ooh, this drives me NUTS. Some people simply live in their own little realities where nothing can penetrate the wall of dumb they've built up around themselves. Sometimes I just want to look at people like THEY are crazy and say, "I'm sorry, I didn't know you were psychic and know exactly how my body reacts to this disease!"
My mom is the main culprit and I can't just shut her out of my life, unfortunately. She constantly compares her "symptoms" to mine, and how much worse off she is than I am... Except she's still working and driving and living her life, where I am practically bedridden.
GAH! The stress! My advice (you probably shouldn't take) is to look at people like they are unbelievable idiots and then continue your conversation with someone else, or walk away. lol