Does this drive anyone else crazy?

[Kgartner]

I just got two more well-meaning alternative treatment suggestions for Annika's seizures from acquaintances on Facebook. These are people who 1) know nothing about epilepsy and 2) know nothing about her particular case. In one case, this person was recommending their own product. This was my response:

"While I appreciate the spirit in which people offer suggestions for treatment options, I ask that you trust that we are doing everything we can for my daughter's health, and that you refrain from offering advice unless I ask for it. I could respond to suggestions one by one, but I would prefer not to. Epilepsy is an extremely complex disorder, and I totally trust the physicians we are working with. Offering unsolicited advice or anecdotal stories of what worked for you or someone else is of limited value to us; in fact, I often find it quite disheartening (which I know is quite unintentional on your part). Thanks! And yes, I do know it comes from love and concern, and I do appreciate that!"

Anyone else get this all the time, or is just my particular crunchy-granola set of friends?

 

[George__]

Good luck
:hugs:

 

[lindsayschu2]

I only have one friend like that--he tells me meds are poison and I should discontinue them and go organic. I'm already 100% organic and still have seizures. But no, I just tell him sorry, I do actually need the meds, it's a complex disorder you don't fully understand, but thank you anyway. I don't get upset about it. His mother is dying of cancer and he is heartbroken researching alternative ways of curing her because modern medicine isn't looking like it will.

 

[Kgartner]

I only have one friend like that--he tells me meds are poison and I should discontinue them and go organic. I'm already 100% organic and still have seizures. But no, I just tell him sorry, I do actually need the meds, it's a complex disorder you don't fully understand, but thank you anyway. I don't get upset about it. His mother is dying of cancer and he is heartbroken researching alternative ways of curing her because modern medicine isn't looking like it will.

Yes, I have a cousin whose husband passed away from cancer and she blames his death on chemo and vaccines. When she gives me advice I generally give her a pass because of her tragic history.

The ones that bug me are acquaintances - people I hardly know who feel free to offer unsolicited advice. But like I said, this may be specific to my circle of friends!

 

[Belinda5000]

I had someone tell me once just believe in a higher power stop taking your meds.Your seizures will stop.

 

[lindsayschu2]

LOL Belinda! And yes K--my friend also believes vaccines kill. I was reading an article about how measles is resurging and killing kids again because people mistrust vaccines. Well, I'm not one of them (though I'm not getting a flu shot because the last one gave me seizures--I don't think vaccines are bad though, it just doesn't seem to work well for my particular seizure problem).

 

[masterjen]

I am a devotee of health and fitness, and consequently many of my friends/acquaintances are as well. A couple of them (unfamiliar with seizures) do believe I "must not be working out enough" or I'm "eating the wrong food", I'm "doing the wrong exercises", etc. I just tell them that while working out and eating healthfully has gone a long ways towards helping me feel better about myself in general, I know that too much working out leads to seizures for me. However, when they say things like that it can make me feel like they are saying the seizures are my fault (I'm not doing this or that or the next thing) and that can get to me sometimes.

 

[George__]

I had someone tell me once just believe in a higher power stop taking your meds.Your seizures will stop.

:roflmao:

 

[epileric]

I've been given a lot of silly suggestions from herbs/supplements to meditation, probably because that used to be the type of people I hung out with, but I think the most ridiculous one was that my I had seizures because I was too "negative" & all I had to do was be more positive to stop my seizures.

To this day I get upset because some books still repeat that claim and I see that as a way to blame the person with the seizures.

 

[Kgartner]

However, when they say things like that it can make me feel like they are saying the seizures are my fault (I'm not doing this or that or the next thing) and that can get to me sometimes.

For me it's that people are implying that we are not doing everything we can do to help my daughter. They think that they have the "answer" - and of course no one has the answer because there is no one "answer." I wish there was . . .

Mostly they mean well, but it is actually hurtful.

 

[jenagade]

LOL Belinda! And yes K--my friend also believes vaccines kill. I was reading an article about how measles is resurging and killing kids again because people mistrust vaccines. Well, I'm not one of them (though I'm not getting a flu shot because the last one gave me seizures--I don't think vaccines are bad though, it just doesn't seem to work well for my particular seizure problem).

I saw a really sad article about how a baby died of measles because the herd immunity of the town she lived in was low and because she wasn't old enough to have her first vaccination she contracted it. Her parents had every intention of vaccinating her when she was old enough too.