Tired, tired, tired of being told how to cure myself!

Hi Gin,

I am so sorry that you are the vicitim of yet another hit-and-run-advice-giver...as Oscar Wilde once said, "the only good thing to do with advice (that someone gives you) is to pass it on to someone else...it is never of any good to you"...

So I tell them that I will pass it on to someone who may be able to use it. Since I can't.

I get a lot of rather innocent family members telling me that if only I stopped eating, hot, spicey, sweet, salty, cooked, raw foods then I would be just fine and that they have been doing it all of their lives and look how well they are doing!

I just ask them how their hemmoroides are doing???? 

Seems that if they would just have a total procto-colectomy like me then they wouldn't suffer any longer!

That usually shuts them up! (then again you need to be addressing someone with hemmoroids!)

I am presently pushing away those who tell me that I should stop working because it is causing me to be tired (!)...I am tired whether I work or not...work just gives me a reason to stop thinking about my pain.

I tell them that maybe they should start working so that they had less free time to meddle in my life!

Take care and start wearing ear plugs!

Sharon

This is a fairly common topic in my CCFA support group.....preconceived notions of how issues should be resolved, coming from family and friends. It's frustrating because to educate these advice-givers on all the issues and complications involved would take too long for a normal conversation.  I can understand your frustration.  There is no stock answer on how to deal with these advice-givers because the communication strategies that can or should be employed vary with the advice-giver, their relationship with you etc....in my own case I tend to be terse and blunt in explaining that panaceas are not really panaceas, and simple and easy solutions to the issues we have don't exist in reality.

When I had my colon with UC, I would just say "doesn't matter what I eat, diet will not cure an auto immune disease. I could swallow my own spit and still have the same symptoms."

We may no longer have our colons, but we will always have the disease.....

Guess what? I wrote this particular offender a carefully worded message and explained why I cannot be "cured" and asked her not to give/send me advice any more. She actually wrote back, apologized, and thanked me for pointing out her "know-it-all-ness" (her word!).

 

So I guess sometimes miracles do happen.

 

Gin

Yeah, I tend to think that people really do mean well, and they usually have a poor understanding of autoimmune disease. They listen too much to pseudoscience and think they have really found something useful. I usually just say that it is more complicated than they can imagine, thank them for caring, and that I stay on top of any new developments.

 

Jan