posted
I am finding myself VERY annoyed at friends who send me unasked for ideas for healing - mostly alternative.
It's not the ideas that bother me so much - I'm very open to alternative healing (been trained in several myself). It's the attitude that seems to accompany them... that this healer or modality is THE thing to make me better, and I MUST try it.
Some of the ideas I've tried, some I'm not interested in, some just cost too much money. These are nice people, but I can feel my Lyme rage start to surge and I just don't know how to reply in a way that is not angry or edgy.
Anyone else in this situation, or have ideas about how to respond without alienating my friends and family?
posted
Elizabeth, our loved ones...family/friends WANT to help us in their own ways without KNOWING what we truly are going thru. So they send us whatever they may come across IN CASE we hadn't seen it.
So just thank them for thinking about you. If you've tried something, and it didn't work. Let them know this.
If you're doing something specifically, share the site, etc. for them so they CAN educate themselves and still provide moral support to you. That's my best suggestions.
At least they are trying, and haven't treated you like a leper & stopped communicating with you. Keep those lines open; you/we all need them to get thru this. My best to you; now have your lyme rage Elizabeth.
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char
Frequent Contributor (1K+ posts)
Member # 8315
posted
I go with, "That is an interesting idea, I will think about that." then change subject.
If that person persists...usually don't except for one relative, I say "I really don't want to talk about treatments right now"
It's true that it is good to have friends and fam that care....
Posts: 1230 | From US | Registered: Nov 2005
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Worthless tests & labs, a dangerous vaccine, insurance companies refuse to pay, undertreatment the norm, all about money. MO. Posts: 281 | From CT | Registered: Oct 2005
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AZURE WISH
Frequent Contributor (1K+ posts)
Member # 804
posted
My cousin also has lyme (alot longer than even me) and his dad is always trying to get him to take this and that....
And he knows he means well but he tells him when you are taking prescription medication you have to be careful what you mix with it.
You could always just say you'll discuss it with your llmd and see what he thinks..... that should satisfy them.
Linda LD
Frequent Contributor (1K+ posts)
Member # 6663
posted
My Mom is always bothering me to exercise.
I work in the yard when I feel well enough and I clean the house and have two little children--I bet even healthy moms have a hard time finding time to exercise. And some days I just can't do anything...
Mom keeps wanting me to see a "specialist" but I know she wont help with the cost or the trip or anything else.
She says she will but she wont--I've known her too long to believe her promises--so that makes it even harder to listen when she starts in on how I need to exercise...
L
Posts: 1171 | From Knoxville, TN US | Registered: Dec 2004
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posted
I think I am bothered most by the suggestions that are really veiled criticism, as in, "If you only tried _______ (fill in the blank: exercise, herbs, Qigong, whatever), you'd be better." I don't think everyone who suggests something is critical, but some have that edge.
I also feel like some suggestions are minimizing of my illness, as in, "All you have to do to be healed is _________," suggesting that Lyme isn't such a hard thing to cure. No one actually says that, it's all in the tone of voice and delivery.
And of course some of these people do think I'll be cured by a few weeks or months of antibiotics. They don't realize that I've probably been infected since childhood, and that I'm not at all sure my prospects are that good. Hope they are, but I've lowered my expectations.
I know I'm taking things too personally when I feel this annoyance, because -- hey -- who really cares what other people think? My husband's coaching me to chill out.
And of course Betty and Char are right, they care enough to suggest something.
Thanks for your ideas and experience, everyone. And thanks for letting me vent!
trails
Frequent Contributor (1K+ posts)
Member # 1620
posted
There is an ABSOLUTELY laugh OUT LOUD hysterical short story about this very issue in the book "You dont LOOK sick." I was rolling around reading it a few weeks ago. It felt so good to laugh at this---all this advice and "you should do this" and "this is what is wrong with you" stuff-- hurts me so very much.
Please buy or find the book at your library--the story will make you laugh too.
I have lost MANY MANY friends during my illness.
It appears to me that those who know the least offer up the most advice.
I stick to my guns now. Shut the F- up if you dont know what the He-- you are talking about.
yeah, that's trails gettin her fur up!
[ 10. March 2006, 12:39 PM: Message edited by: trails ]
Posts: 1950 | From New Mexico | Registered: Sep 2001
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Carol in PA
Frequent Contributor (5K+ posts)
Member # 5338
posted
Well, I'm on the other end of this.
I have several family members who have Lyme symptoms up the whazoo, and they politely ignor everything I say about it.
I also have an online friend with Lupus, who thinks I'm annoying when I tell her that all her symptoms sound like Lyme.
Sigh....
Carol
Posts: 6947 | From Lancaster, PA | Registered: Feb 2004
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posted
Ann-Oh: What a great idea! Everyone loves dessert.
Trails: I will go get the book. Have a laugh. And try to adopt your attitude.
Shelley: Of course you're right. People can't understand, and have their own problems, for heavens sake. It's probably asking too much to ask people to understand me and Lyme Disease in the first place. You're not confusing - thanks for your ideas.
Carol: You've got my number - I have lots of family members who display Lyme symptoms, and no one's interested in checking it out. That drives me crazy too! So I'm *trying* not to do the same thing to them that makes me so nuts. And maybe it drives me nuts because I feel critical or controlling about them.
minoucat
Frequent Contributor (1K+ posts)
Member # 5175
posted
The intent and experience behind the question make all the difference. I find myself listening closely to people who have "been there", and trying not to drop-kick those eternally healthy folks who've just read the newest issue of Prevention magazine...
I find it best to be extremely mature in my response. I particularly like rolling around on the ground while sticking my fingers in my ears and reciting Hamlet's soliloquy (that's the mature part) at the top of my voice.
On the other hand, if you're limited for space and time and don't want to get your clothes dirty, it helps to say enthusiastically "Oh yes, I've researched that and discussed it with my doctor! However, he's very cautious about doing it at this particular time, having seen adverse effects in some of his patients."
-------------------- ********************* RECIDITE, PLEBES! Gero rem imperialem! (Stand aside plebians! I am on imperial business.)
Michelle M
Frequent Contributor (1K+ posts)
Member # 7200
posted
quote:Originally posted by vitch: You could ask them if that method kills spirochetes. You could ask them if that method passes the Blood Brain Barrier.
I am HERE with you on this one, Vitch.
I have educated those who know and love me so that they understand the disease and its effects on me and trust my LLMD in the way I do.
The rest of em pretty much get the eye roll.
There is one thing that makes me a little insane..
I regularly go into the health food store for various herbs I use in conjunction with a regimen of pretty standard abx. (I use Mg. on Marnie's excellent advice, some immune boosters, liver support, teas, chewable probiotics for daughter, etc.)
When salespersons there find out you have Lyme, they immediately launch into this know-it-all attitude, dismissing all antibiotics with a wave of the hand, and trying to steer you to a bunch of other stuff guaranteed to cure you of "lymes," or which "cured" some friend of theirs.
When questioned, it is clear they know next to nothing about "Lymes disease" or the bacteriocidal properties of anything they are trying to sell you.
I would always turn to this Board first, then clear with my LLMD, any advice on alternative herbs before EVER asking anyone in a health food store anything!
My kinder, gentler side narrowly prevents me from fixing these people with an icy look and giving the a response a la Trails.
Barely.
Michelle
Posts: 3193 | From Northern California | Registered: Apr 2005
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