Well Meaning Advice

[MyGirlsMom]

Hi all! It seems to me that I continue to get well meaning advice from friends and acquaintenances offering solutions to cure my MS. This includes a variety of solutions from stem cell options, the various drug therapies, all the many diets (Best Bet, Vegan, Wahl, etc.), different vitamins or supplements, no fluoride in water, more exercise, less stress (including “just quit your job”), and the list goes on and on.

I was explaining to a family member the other day that while appreciate all the new findings and remedies for improving life with MS, there is really no known cure.

I also shared with my family member that these constant comments make me feel that I am the cause (or that they see me as the reason) of still having this disease. Because if I just did ______ (fill in the blank from the long list), then I would no longer have MS. It is especially frustrating when I am told that they knew someone that “changed their diet” or “did stem cells treatment”, etc. and no longer have MS. Of course, I am then asked why I don't do _____....as if it is all really that simple.

I am interested to hear how others feel about these comments. Perhaps this is bothering me right now as I have heard quite a number of these from friends recently, probably because my recent flare has made my MS more obvious (using a cane and visible walking and fatigue issues.)

Of course, I kindly reply and thank them for their ideas, but inside it gets to me that they think we MSers are choosing to still have this disease because we haven’t done ____. (Fill in any one of the many simple solutions to fix/cure MS.)

I look forward to hearing your thought on this. To be honest, mostly so I don’t feel alone in being a bit annoyed from time to time. I wish my friends would take time to better understand or ask me about this disease instead of making assumptions.

Thanks alll! MGM

[loopey]

I get the same thing all the time. It is frustrating but I'm not sure there is anything we can do to prevent this. I just try to remind myself that it is mostly well intentioned.

[marti]

You probably better get used to it... this will go on and on. All I do is accept it and move on. If I thought there was a magical cure out there I'd be first in line. But after all these years I know better.

I have the best son in law on the planet. He's very "into" science and reads every article he comes across concerning MS. He just wants me to be well again. But, he doesn't have the basics down on our illness. He believes everything he reads and hangs onto the hope that these things give him. Right now he wants me to travel to Panama for stem cell treatment. I love him and appreciate all the research he does on my behalf. So I just thank him and tell him I'll look into it and I walk away.

[Boudreaux]

I'm probably guilty of dishing out the well meaning advice myself.

I'd try to really listen and ask them questions because they might actually be on to something, probably not but if you can get them to realize that MS is not one dimensional and different for everyone they may be a little more understanding of how it impacts you.

Them: Joe cured himself with this new diet.
You: Did his neurologist say he was cured or in remission?
Them: Cured.
You: Ask Joe if I can contact him.
You later on: Did you get Joe's contact info?

If they want to help, they'll help. If not, that's where your conversation will end. Always end the conversation with Thanks, I'll look into it. Don't let the ignorance of others control your mind, that is your job.

[502E79]

Boudreaux,

Nice response to the OP. Certainly for weeding out the sincere from the insincere. And may even lead to info worth following!

It's often hard to put into practice but always the better way to go. Thank you!

Jer

[Carlyle]

Stem cell

Hello,I have heard so many times stem cell is the answer! Why don’t I do it?Im like you.Everyone is sooo smart.Dave

[Badaimata]

MGM, as a person with MS who really does attempt to stay abreast of the latest developments and who feels he knows considerably more about the disease than the average lay person, I flat do not tolerate well meaning advice from anyone who isn't really knowledgeable about it. I stop them in mid sentence and ask them to send me the link to the published, scientific study which substantiates the claim. I also have informed my friends and family that I really don't want to discuss my MS with them except to the extent that I may require their cooperation or assistance. I have found that the disease is generally misunderstood by most people and my attempting to educate them only leads to more confusion. I do however offer to send them links which will explain things to them.

[Daisycat]

I have kept my number of people who know down to 5. These people know my opinion on this and they also have been made very aware of my opinion of advice I don’t ask for. If it ever happens I will not respond kindly and we probably won’t ever be on speaking terms again.

[jjs]

...It is especially frustrating when I am told that they knew someone that “changed their diet” or “did stem cells treatment”, etc. and no longer have MS. Of course, I am then asked why I don't do _____....as if it is all really that simple.

I am interested to hear how others feel about these comments. ...

I'm right there with you ... and like Marti already said, get used to it because it never ends. I quoted the above clip because I just wanted to share this story: not too long ago I was watching a youtube video of yet another person who says she cured her MS by changing her diet, fixing her leaky gut, etc., etc. She said the biggest help by far and what made everything better was eliminating gluten. I so wish it were that simple. If it was, I would not have issues because I was gluten free long before MS happened!! So frustrating. I think one of the most frustrating things to me is the false hope stuff like this gives. Those who are really weak will chase after one cure and the next and the next, driving themselves nuts and stressing themselves out ... and making everything worse because of the stress and the fact that nothing is curing them.

I say ... basic common sense stuff we all know is good, but there is no cure, so don't stress out over it. Eat 'healthy' [the common thread of all of these diets is eliminate the sugar, junk, processed food, etc. and eat more vegetables!!], get enough sleep and rest, water, sunshine, fresh air, exercise as best as you can, reduce as much stress as possible (don't stress out about trying to reduce stress!). Be happy. This is where we are so we might as well make the best of it! Of course I have to remind myself of that from time to time

[marti]

I'm right there with you ... and like Marti already said, get used to it because it never ends. I quoted the above clip because I just wanted to share this story: not too long ago I was watching a youtube video of yet another person who says she cured her MS by changing her diet, fixing her leaky gut, etc., etc. She said the biggest help by far and what made everything better was eliminating gluten. I so wish it were that simple. If it was, I would not have issues because I was gluten free long before MS happened!! So frustrating. I think one of the most frustrating things to me is the false hope stuff like this gives. Those who are really weak will chase after one cure and the next and the next, driving themselves nuts and stressing themselves out ... and making everything worse because of the stress and the fact that nothing is curing them.

I say ... basic common sense stuff we all know is good, but there is no cure, so don't stress out over it. Eat 'healthy' [the common thread of all of these diets is eliminate the sugar, junk, processed food, etc. and eat more vegetables!!], get enough sleep and rest, water, sunshine, fresh air, exercise as best as you can, reduce as much stress as possible (don't stress out about trying to reduce stress!). Be happy. This is where we are so we might as well make the best of it! Of course I have to remind myself of that from time to time

Amen and well said.

[MMMMS]

I don't get the "cure" comments, but I do get the "dealing with it" comments.

People tell me what exercises are best. They I insist this or that a symptom is a normal part of aging. And so on. I've learned to let them think that they know something. It's easier than educatiing them, because they don't want to learn, they want to teach.

So, I've listened to how their memory is just as bad as mine, and how they get tired, too. Then I let them teach me how to deal with it. 🤣

You know, as we get older, we tolerate heat less. Yup. I sat too long in the sun 2 days ago, and my vision is still blurry. But you know all about that. Sure you do. 🤣

[oceanpride]

Poor souls. They are just chronicly healthy. It’s not their fault.

[kittysmith]

Same here

My MIL, though well meaning, told me she had met a woman who had been "cured" of MS. She gave the woman my email address. I ignored the email. After that, I always felt like I shouldn't go take a nap or use my cane around my in-laws. It made me feel like she knew there was a "cure" and I wasn't trying it.

People mean well, but it is still very frustrating.

[pennstater]

I thank them for their concern and interest, let them know that I always review with my neuro the latest research and discuss what things I can control to remain as healthy as I can. If I ask about rumored cures or diets, he reviews with me what the research supports and what the studies are missing.

I then let them know that like most people, advice is to eat a healthy well balanced heart friendly diet since it is also good for the brain, avoid foods if I have any sensitivities to them, exercise and stretch, and get adequate rest. He also says to feel free to explore holistic treatments, but if taking any herbs/vitamins/supplements, he wants to discuss first. Unlike most people, he tells me to continue on my MS treatments.

I then just let them know that until they know a cause for MS, hard to find a cure, and if I learn anything else, I will share with them, and close by thanking them for their concern.

That is if it is a person meaningful to my life. If it is someone outside of that, I thank them, and just leave it that I follow medical advice.

[JerryD]

I have heard these kinds of comments many times over the past 6 or 7 years. I just ignore them . Most people that make those comments are well meaning but are completely uninformed. Good luck.