Unsolicited Advice

By Dianne Scott

2 min read

I was diagnosed with MS in 2007. It was around this time that a crop of MS experts was born. One day, as I struggled along going into work with my walker, a Professor asked me why did I have 'that thing'. I explained that I have MS to which she responded with a pat on my back as she told me, rather confidently, to just lose weight and I'd be ok. As if anyone with MS could simply diet for a cure. Once, I was advised of the 'study' that showed a correlation between MS and meat so maybe I could cut that out of my diet in part or whole. I'd be remiss if I left out the time a long lost friend and I were catching up and after discussing my MS, he asked if I was in a relationship and after finding out I wasn't, he diagnosed that I probably just needed some 'good sex' to get better because after all, "everyone can benefit from that". In other words, fellow MS'rs, get it on to get MS gone. Honorable mention goes to the advice not to 'claim' my diagnosis. I suppose to not acknowledge the MS will negate the need for a walker or wheelchair, pain and symptom medicated management, erase the brain and spinal sclerosis, repair the damaged myelin, etc. I could go on with additional 'advice', but for the sake of time, I'll move on.

My intent is not to portray myself in anyway as cynical, bitter or anything of the like. I certainly appreciate any 'help' rendered when in good taste and from a good place. However, pardon me should you find my response to be more perfunctory than 'real' or my smile to appear 'fixed' as I feign interest at said or similar comments. After 9 years and counting, though just about accustomed to it, at times this unsolicited advice admittedly takes a toll on my psyche. There are some responses I think of saying such as:

"With all due respect...
I find that hard to believe
That's just ridiculous
Thanks, but no thanks
Are you serious?
Oh yeah? Wonder why my SPECIALIST never mentioned that"

For the record, I would never utter those types of responses because in the grand scheme of things, I know that the comments aren't facetious. It's just important to be cognizant of how one might receive what is told to them especially in matters that can be deemed sensitive.

I do, however, appreciate words of encouragement, questions to understand, expressions of kindness and pleasantries, etc. as these are the types of things that warm my heart and provide much needed support for me as I deal with this MonSter.

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lisam Member
I was DX in 2007 too, just sayin! I have had some stupid advise too, like a lot of us. The one about sex is a new one to me, made me laugh. If its okay with you, I would like to 'borrow' one or two from your list of responses for future encounters. ;- )
1. Dianne Scott Moderator & Contributor
 Hi! Yeah.. the good sex one was a mess. He gets the 'originality' award! ...But not a compliment in this case.. Lol! Anyhoo, 'borrow' away..be my guest!
davida Member
Great article and I can totally relate. My brother in law told me that MS was a man made word just to make money from us suckers and I choose to have it. My mother told me that her friend drank celery juice and got rid of her MS. She demanded that I drink it everyday and if I don't then I must just want to have MS. My brother told me that God gave me MS to humble me. My sister said she read an article about silver amalgam fillings causing MS and I should see her holistic dentist and get dentures. My other sister said that Ann Romney has it and she looks fine. She rode horses and got rid of her MS so I should buy a horse. I see all these families who cry when they hear the news but my not my family.
1. Dianne Scott Moderator & Contributor
 Thank you, David, for reading my article and taking the time to comment & share your feedback! But I'm sorry to hear that your family is a bit 'short' on sympathy.. And I thought MY 'unsolicited advice' was wacky! As if MS isn't enough to deal with, huh? You hang in there, my friend.. At least we all have each other! ♡
davida Member
Thanks for the support Dianne. I have my nephews wedding this Friday and it will be the first time in 2 years that I have seen my whole family at the same time. I don't want to get upset when they all say "You look fine and you don't look sick. You must be faking by this MS thing." Last time I saw them all together was Thanksgiving 2014 and I wasn't sick yet and didn't get my first attack until March 2015. So do you have any advise? I'm so afraid to see my own family and I feel like I need to show up in a wheelchair for them to believe me. I hate having an invisible disease!!
1. Dianne Scott Moderator & Contributor
 Such a celebratory occasion for family should not have to be approached with any kind of apprehension such aswhat you feel. I would say first that you don't have to prove anything to anyone - ever..at all. Additionally, the only reason you should arrive in a wheelchair is because you have determined that you need it. For the naysayers who feel you look too good to be sick, I'd simply say 'Well thankfully I don't look like what I've been through'! Take their comments with a grain of salt and try to enjoy yourself in honor of your nephew's special day. Don't expect anything grand in their attitudes/behavior/commentary and that way, you can't be disappointed to get anything less. And you never know, it's been 2 years.. they may pleasantly surprise you! Good luck and have a blast! ☺
2. esme2288 Member
 Oh, I know about that. Since my father has MS and my childhood was consumed with not stressing him out (my mother's way of controlling everybody), I expected something like camaraderie when I told them I had it after the birth of my third baby. My mother looked at me as if she was just angry, like I was trying to get attention. My father didn't even look at me (probably because he hadn't been listening). They were visiting from across the country and neither of them lifted a finger, a mop, a piece of cookware,... They didn't make any effort to engage the other two kids, or drive them to school. They'd recently spent 3 months with my brother's family, because they'd just had their first baby so they needed more help. My mother explained that to me right before she called the travel agent to change their flights so they could leave sooner. My bad?
guitar-grrrl Member
Great post!! I have a bass player friend who struggles with her own chronic illness who swears fecal transplants will cure me! Ewww... I see her in the market often, and she keeps asking if I've tried it. Finally I told her I wanted to see a scientific study with at least 1000 subjects before I'd think about it. She hasn't mentioned it since. 
1. Dianne Scott Moderator & Contributor
 Whoa.. Lol! Great response & good for you! Btw, Thanks for responding!
jlnewport Member
My whole family has become the "experts" on MS. I was DX'd in 2001 and if I get the "stop drinking diet coke for a cure" email again, I may loose my mind. First of all, I don't drink diet anything, second, I haven't drank coke in too many years for me to remember. I know they mean well and only want for me to be better so I try not to speak to them with gritted teeth as I tell them my treatment is between my neurologist and I.
1. Dianne Scott Moderator & Contributor
 Ahhh... One that I forgot as I've gotten that one too! And like you, I didn't drink diet anything OR Coke! Smh/Lol! Thanks for your feedback..
esme2288 Member
omg, I hear you sister. I've had people recommend that I sting myself with bees 31 times, three times a day, for the rest of my life. One person insisted I go to a Chinese doctor because American doctors "don't understand MS." A lot of people tell me, "Keep smiling," because that always helps and my personal favorite, "it could always be worse!" Well, duh. Yes it can always be worse, but how many healthy people go to bed at night and say to themselves, "I'm so glad nobody in my family died today?" "Woo hoo, I still don't have cancer!" I guess my point is that, yeah, it can always be worse, but for me it could be so much better...
1. Dianne Scott Moderator & Contributor
 Heard about the bees and know someone who actually tried it. I'm sure you know how that story ended.. Epic fail! Smh/Lol At any rate, your last statement sums it right up: "yeah, it can always be worse, but for me it could be so much better…" Thanks for commenting!