So completely fed up

[choco]

I am so fed up with well-meaning friends sending me "good news" stories about how this person, or this celebrity has done XYZ and is still able to live life "normally".

A friend of mine just sent me a link about Montell Williams, who I'm sure is a marvellous bloke however he also has marvellous money (much of which is made by selling his marvellous MS products of which I am in two minds), going bloody skiing of all things.

Apparently, it is a matter of mind over body, geewhiz I didn't know that. So in other words my mind wants my body to be like this, I see. Or maybe better still my mind is not "strong enough" to overcome my body. Either way, these well-meaning endeavours get on my nerves.

[tortis]

YES!!!!!!! I am also tired of the M.S. drug ads with the M.S. patients doing all kinds of things and they always have this great smile as if everything is just great and even the ads on some of the M.S. sites. Why do they never show what this horrible MonSter really does to us. Once in a while, like with the video of Annette does anyone see how truly horrible this can be and yes some of us do still live pretty normal lives but it seems like that is all we ever see. The public needs to see the pain, the disability, the grossness of a lot of what we have to live with, maybe then someone with big money will get them actually working on curing this torture. Of course the big drug company's will never develop a drug that doesn't keep making them billions so they will always just keep making treatments that keep making them money but never cure and you have to keep sending money.
Tortis

[pennstater]

I just thank the well meaning people for thinking of me, tell them there is no science to support it, and that I always review latest research with my neuro, as well as what I can/should do differently.

This stops most of them. But for the more persistent people who know better, I actually invited to my next neuro appt. so they can discuss with him. That stopped 3 people, none of whom took me up on the offer.

Just received the latest Narcoms report. Saw where Ann Romney is raising 50M for neuro clinic in Boston for 5 conditions to take advantage of cross research. Likewise, to do studies pharmaceuticals never will.

Have to hope.

[Thinkimjob]

I don't do this often, only after the second piece of well-meaning but alas extremely annoying "guess what you could be cured if you did a, b or c".

Now, normally I don't talk about MS, or me, or any of my medical issues (except here) if I can help it.

So, if I know the bearer of relentless glad tidings well, I will start the conversation with the latest MS news.
I'll dwell, in detail, on PML, and all the gruesome possible side effects of drugs, and if push comes to shove I will "shoot up" with full grimace and brave muffled "ow" in front of them.
"No, no, it doesn't hurt. Much," I'll say, slapping my leg. "oh dear, I seem to have hit a blood vessel. Can you pass me a tissue?"

They usually don't do it again.
Bee Sting Therapy is the absolute killer. Talk about how fantastic that would be, to be "bit" by a bee every day, for no actual benefit. They always go quiet then. They'll even get you coffee.

[JerryD]

I have used the 'sarcasm' response to infinity and it has worn off. Most well wishers are uninformed, so I don't give any responses, at all. Think, you have responded like I would , generally. I , usually, have my information arsenal fully loaded. When I get any 'you should try 'a', 'b', 'c', I ask a lot of questions about the pedigree of the 'a','b','c' treatments. I pose questions about every aspect of the treatment and doctors and hospitals and FDA trials. This usually cuts the 'crap'.

[Waydwnsouth1]

I know how you feel. I had a gentleman in my office a couple of weeks ago who asked me why I was walking with two canes. I thought at first it was kind of bold of him but I told him I have MS. That's when he unleashed his knowledge on how I can cure my MS. He told me to google Dr. Wallach, MS and he will tell me what I need to take to cure my MS. The gentleman even went so far as to tell me this doctor had cured a patient with MD. So out of curiosity I looked him up ok You Tube and after a few minutes into his presentation he started trying to sell his product he developed, you know the rest of the story.

So I know what you mean. But people mean well they just don't understand.

[Mamabug]

I just thank the well meaning people for thinking of me, tell them there is no science to support it, and that I always review latest research with my neuro, as well as what I can/should do differently.

This stops most of them. ...

I just thank the well meaning people for thinking of me. They don't live in my shoes, so I don't expect them to get it. I appreciate them, for being well-meaning, even when they don't understand.

[KSeraSera]

If the people are close to me, I say "thanks, I'll look into it". I know they are doing it from a place of love and concern, and that is really all they know how to do to help.

For those who aren't so close, I say things like, "and you know, I just read an article about what you can do for those age spots..bald spots..love handles.." You get it. I say it with true concern and caring, but it still takes them aback. And it makes me feel sooooo much better.

[Tomjadg]

I don't get "help" suggestions from family or friends. The worst information I got was from my infusion nurse when I went from Ty, to pills. She told me that she had a woman in a wheel chair that took the pills, and got up and walked. Really? Don't pee on my leg and tell me it is raining.

[zilphia01]

LOVE these answers.....

Kserasera.... that is SO PERFECT! I am usually sarcastic and say, "Wow, I am SO GLAD you have all the answers."

I am going to start using the bald love handle comment.

I needed that laugh today.....

[JerryD]

I replied to this thread, previously. I think that I forgot to respond that I really feel that non-MSer's say things about what they understand about MS and get it wrong many times. I think that is a failing of the MS community's public education efforts. This is how I feel about all of the MS organizations. They are not doing a 'good enough' job of educating the public.

[terith]

Really? Wow!

People try to be helpful, I like them. I always say my neurologist is a researcher, she knows the absolute latest best treatments and I'll run it by her. Friends now say they heard about something but I probably know about it already. I thank them and check it out or explain how it works/doesn't work. Good conversation, end of story.

People who think I'm stupid, I don't like them. To the "drug-company conspiracy" people my response is "our whole [US] health care system sucks." To the miracle-cure-hidden-by-a-vast medical conspiracy people: "If there's a cure I'll hear about it. It will be certifiable, and newsworthy, and I'll already be in line for the magic potion with my fellow MSers, like it's new product release day at our local Apple store. Why would ANY physician hold back? Mine will be taking numbers at the door to keep the queue orderly.

People with things to sell are bottom feeders. I loath and despise them. "This will stimulate your immune system" -- and kill me, doncha think? "But my husband and I feel so good, we're selling this supplement and we know it would help you. Here's a [dubious] website. Take this [debunked] book. The brochure ..." -- "No thanks." "No, it's probably great for a normal body, but I coordinate all my meds with my physician, a specialist." "No, I DON'T WANT TO FEEL BETTER. I am an idiot." [later] "I haven't changed my mind, yes, I do seem worse." [later still] "NO."

I'm a one-woman MS educator. When people listen, anyway.

[kelm10]

Ha

I, too, just usually say thank you kindly and go on.

Today it was extremely funny when my husband sent me an article in the local paper of a lawyer that was able to work until retirement age. He went to work and worked in court and his law practice in a wheel chair.

Ok, when I make a lawyer's salary, I will. Actually, I still work very part time, it is what I can do. If I can still go to work very part time, even with a scooter, I will. It helps me mentally, as of right now.

I, too, am an one woman educator, and, I teach those around me about MS.