Old 02-04-2016, 08:38 PM #1 (permalink)
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Default Um...'helpful' people

There is an aquaintance of ours who is convinced that a specific diet high in the right saturated fats will eliminate my hubby's symptoms of ALS. She contacted me several times in the fall to tell me that if we just followed this diet he would literally regrow muscles within three months. But don't tell the docs because a cure would mean they don't get money, so they don't want a cure. I thought I had moved on past this with her, by politely thanking her but indicating that we were comfortable with the doc recommendations at this time.

Today she called me at work! Actually told me that she was concerned because ALS doesn't have to be a death sentence and we shouldn't be sitting around waiting for it to happen. again she repeated that the right diet will result in restoration of atrophied muscles. I now have several links in my email inbox. The complication is that I work with her husband and need to have a cooperative relationship with him. UGH!! How can people not understand that this disease is horrible enough without this kind of 'help'. She wants to come start a dialogue with us about his diet. Triple ugh!
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Old 02-04-2016, 09:20 PM #2 (permalink)
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Default Re: Um...'helpful' people

I'm so sorry that you have to deal with this, and in a situation where you have to keep diplomacy in the mix!

Does the husband you work with agree with her views?
Now if he does, it's really going to be tough to politely put them off.
If he doesn't, or isn't sure she is as right as she claims, then you may be able to have a quiet word with him, diplomatically, and explain that you truly appreciate her caring, but you have to make your own decisions on treatments/management/acceptance.

Horrible position, I was told that if I had faith god would heal Chris, and was offered all kinds of things. Chris even had a friend hand him a bottle of B12 tablets. No, I should say - the bottle was put on the table in front of him as Chris could not pick a bottle up, and as he could not swallow ... well I did start taking them because B vits are good for stress, but I never told the friend. He never even asked later!

I hope you can find a way to keep the wife and personal stuff out of your work relationship with the husband!
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Old 02-04-2016, 09:21 PM #3 (permalink)
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Default Re: Um...'helpful' people

I have had a similar experience with someone. It takes amazing tact and diplomacy to get someone like that off your back because they sure can be insistent. That's a burden that you do not deserve.

I'm sorry you have to work with her husband and maintain a decent relationship, because otherwise, the solution would be to give it to her straight and walk away.
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Old 02-04-2016, 09:56 PM #4 (permalink)
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Default Re: Um...'helpful' people

Waay sorry. I couldn't be patient with that.
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Old 02-04-2016, 11:33 PM #5 (permalink)
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Default Re: Um...'helpful' people

She needs to read The ABC's of ALS.
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Old 02-05-2016, 09:05 AM #6 (permalink)
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Default Re: Um...'helpful' people

She called again last night. I didn't pick up, but she left a message about tuning into a 'Metabolism Seminar' on-line. Said again that she is convinced that he can be cured. I am going to have to address this more directly and I don't think polite is going to cut it. Now to figure out how to limit the repercussions with my co-worker. Maybe talk to our supervisor first? Triple UGH! Like we don't have enough issues without people thinking they know better than Neurologists. We go to MGH--they are pretty well known in the ALS world, but I am sure someone in a small town in VA with no medical background can cure this horrible disease--insert sarcasm font.
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Old 02-05-2016, 10:19 AM #7 (permalink)
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Default Re: Um...'helpful' people

Oh ICK and UGH, what a stupid woman. Have you figured out whether she is trying to point you towards information that is free or some product someone is hawking? The online seminar has my radar buzzing...

Yes, is sounds like you are going to have to be direct. Try to do it while you can do it calmly. If I leave things too long sometimes I have trouble remaining calm...
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Old 02-05-2016, 10:33 AM #8 (permalink)
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Default Re: Um...'helpful' people

Hi
The most tactful way might be to tell her a little white lie. If you sent her a message saying that you knew of someone on your support groups that had tried just this diet and it didn't work! You had asked all about it and found it wasn't appropriate for you. So although you thank her for your interest you know that it's not going to help and won't be trying it.
Just a suggestion it depends on how comfortable you are in telling a fib but it might shut her up without getting the husband involved.

Wendy x
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Old 02-05-2016, 11:15 AM #9 (permalink)
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Default Re: Um...'helpful' people

Personally, I would be more upfront. I would say something like " This is a disease with no cure and at this time acceptance is the most positive way for us to deal with it. We try to enjoy each day and accept that as a gift. Although we know you are trying to be helpful, it is distressing to us. We know you will understand that and restrain from offering advice, as we have done our research and have to live with the reality of this. Thank you for caring- but the best help you can offer is prayers for strength and courage."
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Old 02-05-2016, 02:37 PM #10 (permalink)
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Default Re: Um...'helpful' people

I suspect we all have encountered these kinds of folks.

In my case, they sincerely believe what they are pushing. They live the lifestyle around it and derive income from it.

They are well-meaning and nothing I say will dissuade them from their belief that their balm will provide a cure (for this and many other things). I can not talk them out of it.

So, I don't try. I also don't mislead them, as I have found that one falsehood often leads to another. Misleading folks is just not consistent with my morals (though, I admit to failing many times).

When I run into these folks, I simply communicate something like "no, I have not tried it and I don't plan to try it".

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Old 02-13-2016, 06:46 PM #11 (permalink)
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Default Re: Um...'helpful' people

yes, it is only the beginning. Everyone has the cure--diet, vitamins and a host of other elixirs. It is a financially driven market and I suspect your "friend" has a financial gain. I reached a point where I told folks to take a hike regardless of the relational consequences.
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Old 02-13-2016, 07:12 PM #12 (permalink)
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Default Re: Um...'helpful' people

After dealing with this, my response has been show me the scientific proof and studies from reputable institutions. If you cant show me proof, I dont have time to waste with this because I have someone precious to care for. And if they think not much is involved, have them come and take over for a bit. That is what helps. I dont mind saying this anymore. At first I was in a rage all the time but now I chalk it up to stupidity.
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Old 02-13-2016, 07:42 PM #13 (permalink)
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Default Re: Um...'helpful' people

How is it going Cody, have you been able to get her to back off without problems in the workplace?
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Old 02-14-2016, 07:11 AM #14 (permalink)
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Default Re: Um...'helpful' people

Thanks for asking, Tillie. It actually got worse, she showed up at work twice and left notes on my desk. I was able to avoid her, but it was very intrusive and uncomfortable. I have a very dear friend, who doesn't know this woman but was offered to call her. In a nutshell, She told her that I was appreciative of her concern, but was feeling overwhelmed with our current situation and so my friend was acting as 'chief information officer' and she could send the information through her. I haven't heard from her since and her husband has not mentioned it and remains cordial. I have no idea if she is contacting my friend, but if so, I remain blissfully oblivious. Hopefully, it stays that way. Fingers crossed.

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Old 02-14-2016, 09:01 AM #15 (permalink)
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Default Re: Um...'helpful' people

Thank God ! I am so glad you had someone to be a go between. This kind of stress can be overwhelming when you add it to the pile you must carry
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