I've had so many folks, who are well-meaning, recommend this or that "treatment," or offer the "have you heard about..." comments ever since I was diagnosed. They have slowed a bit lately, for which I'm grateful, but I've noticed that I feel more and more exasperated with these remarks and questions lately. I know most of these people well and know that they are truly just trying to be helpful. There are a few snarky responses that want to escape my lips, so wish I had some really helpful responses which relate that I'm grateful people are concerned for me, and yet make it clear that I'm making the best decisions I can. I know they can't understand how exhausting and, sometimes, condemning their statements are.
I've responded a couple of times with "Thank you for thinking of me. I'm constantly looking at the latest research and feel as though my neurologist and I are doing the best we can."
How do you respond in a genuinely grateful, but clear way to these suggestions?
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greaterexp
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That, generally is how I feel after all the same people saying “ oh, you look so good” or “ I do not see any symptoms today”. I could choke the next one to say that! Lots of love, Kelly
If it sounds like reasonable research they've come across I'll say Thank you. I'll check it out. As for complete bunk suggestions I've yet been able to refrain from snap, instantaneous, snarky responses. Like when someone tells me "Just get stung by a honey bee to cure your MS." (Yes someone actually told me that.) My snarky response "If it were that easy don't you think the issue would have been solved centuries ago? I've been stung by lots of honey bees so I should have been immune to it right?" I used to have a coworker who said that I have little tolerance for stupidity. 😊 MS has further reduced that tolerance.
I tend to say something to the effect of...MS is a moving target. Enough said.
If this condition proves anything it would be that nothing about it is exactly specific nor easily understood /defined. Especially if you're not an MS'er. It's the members only club you don't wanna be in.
I think everyone faces the exact same issues that you're talkin about I've got a wonderful sister-in-law that was convinced a couple years that I had Lyme's disease not MS. Then there is the person who are people who tell you how good you look so you must be feeling well that don't have a clue of what's going on inside! Between the two it does become very frustrating..
I think this is an excellent post because I think it's good for the new people to understand and to be forewarned about the scenario described. That way they might not be caught so off guard and be able to form a stable and pleasant answer to the inquiries. Fancý.
That’s a tough one for me, most people (including family) just don’t get what PPMS is about. I try to let them know that I’m as good as I’m ever going to be and without being a jerk, I let them know that they should expect less mobility in the future and more wheelchair time. It’s hard because like you said, they mean well.
I think you have very good responses, greaterexp...like you said, people are generally well-meaning...but if I want to end it...I just pull them aside to let them know I prefer to focus on things I have going for me right now...and I’ll keep them posted as needed.
Family: “You sound anxious mom...don’t be...I’m on top of this..I prefer to talk about this only if it’s urgent.”
I’ve found soon enough, that when consistent with these responses, the comments have subsided. Also, body language may be just as important...confidence can show “I’ve got this...say no more.”
When I'm asked what happened to I normally say I injured myself to strangers.
But family they have learned don't compare me to anyone else because I don't care what that person is doing, and I don't care about some off the wall new remedy is ( mainly my mother)
My mother has always found away to turn a positive into a negative i.e. what do you need that for you claim your getting better , what are they teaching you in pt it's not helping?, etc I just ignore her . Other chime in she is doing better what's your problem?
I have had strangers come up to me who would ask what happened and if I feel they're sincere in their question I'll tell them. Their response is usually positive and they would tell me they either knew someone who has it or they tell me they hope thing get better.
I had a couple of people walk up to me out of the blue and ask me if I had MS. I would kindly ask them why and they would tell me because I either walked like I had it or they know someone and they are able to tell from being around them. They offer support and encouragement. Never advice.
I never respond to a 'How are you?' question with a 'Fine' answer because I had someone respond to that with 'Just fine?' It opens up a whole new conversation and I do not like to talk about myself. So, when someone asks 'How are you?', I usually reply, 'Living the dream!', and that answer usually keeps them quiet because they don't know how to respond. Try it the next time that someone asks 'How are you?', and let me know what happens...
I guess what tires me most is the stream of suggestions for alternative treatment, usually involving special diets, essential oils, herbs, etc.. I really don’t want to offend anyone, especially those who mean well and who feel they’re only looking out for me. I just would like a nice way of shutting down those conversations before they go anywhere, especially to the point at which I feel annoyed or exhausted. I don’t want to spend so much effort on explaining why none of them work for 99% of people. (Please note that I am not trying to dissuade anyone from choosing their treatment, even if it isn’t traditional medicine!)
My answer depends on who is making the suggestion and what they are suggesting but it is usually something like "thanks for the info, I will check it out"
Soon after I was diagnosed my husband came home and said a friend of a friend is a podiatrist who has MS and he told the friend he takes freeze dried brain. I laughed at first but since the source was a doctor I looked it up and it was of course without real evidence. I told my husband I was not going to take it and he has since not suggested anything.
My chiropractor mentioned lions mane mushroom supplement to me this week saying he read it helps neurologic function. There was actually a report from NIH about it that sounded encouraging but of course needs more studies.
Supplement manufacturers have no incentive to do studies because supplements aren't FDA regulated and if they did studies that showed their product didn't work it would not be good for business. I am sure the supplement industry profits seriously rival the pharma industry and don't have to prove their products are safe or work.
All the conspiracy theories that physicians and pharma are in cahoots to keep these supplements that cure away from the general public are laughable to me. Very few physicians are in it for the money. I know I am grateful pharma companies are willing to invest millions in research looking for new drugs. Without them we would not have made the progress we have with MS or so many other diseases like cancer.
Being a nurse I am usually around other healthcare professionals who don't usually suggest outlandish stuff. I often get asked if I am better after my Ocrevus and have to explain treatments for MS are only slowing progression and do not cure or improve the condition. Before being diagnosed I was unaware of this too.
Now I better get off, it is time for my CBD oil rubdown followed by a coffee enema and 6 pounds of blueberries 😁😁
When people ask how I am, I usually say ok but if they really want to know I tell them. I have nothing to be ashamed of. If/when somebody offers me the cure of the day I thank them. Sometimes I’ll add “everyone is different.”
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