The MS Know-It-All

Have you ever run across the “Know-It-All”? You know, the guy or gal who has done, seen, tasted, smelled, tried, succeeded at (hardly ever failed – at anything), read, studied and/or experienced whatever topic might be at hand? And have you noticed that these KIAs (might as well give them a name, right?) have opinions about a subject that are almost always diametrically opposite yours on just about everything? It seems sometimes that these KIAs can only feel themselves to be right by making the rest of us feel like we are somehow wrong.

How about the MS KIA?

I’ve run into MS KIAs who will tell me that they have cured their MS – and attempt to make me feel bad for not curing mine. Or MS KIAs who tell me that my disease-modifying drug of choice (or choice to no longer be on drug) isn’t the best for me because <fill in the blank> (oh, I could fill a volume with the number of reasons that would fill in that blank). How about the MS KIAs who know everything about your multiple sclerosis simply because their great-aunt’s cousin by marriage six-states-away had MS – though they never met this person?

I’ve run into plenty of KIAs in my life, and I just don’t have the energy for them anymore. I guess it’s partly because one of the things I’ve learned from MS is to budget my energy, and they are simply not worth the effort. Still, a little part of me would love for the KIA to see the error in their ways and understand that there is little in anyone’s life history to support such arrogance. Well, that and who gave them the authority to spout off about our disease the way that some people – particularly strangers – think it’s alright to touch any pregnant woman’s belly without asking?

I’ve been doing a lot of reading of late, on other MS blogs, on support sites and various social media sites about MS. There are some very good sources of information, intellect and emotion out there on the Web. There is also an overwhelming abundance of MS KIAs.

Seriously!  Where do people come off?

I suppose, if I were to be fair and go back to read nearly eight years of my Life With MS Blog entries, I might see a touch of MS KIA in myself on an occasion or two. If that is ever the case, I heartily apologize!

I guess it all comes down to a core principle to which I adhere: I don’t really know that much. I know that I am a sentient being and I know that I am capable of love. Other than that, it’s just my system of personal beliefs that get me through each day

So, I guess when an MS KIA tells me that they know something that is contrary to something that I have grown to believe, it makes the comment more of a personal affront and gets my dander up.

The thing is, changing a couple of words in a conversation can change an MS KIA into a person who at least appears to care. “Should” replaced by “have you thought about” becomes a conversation, not a sermon. “What do you think?” works much better at holding my attention than “You know what I heard (or read or saw) that works?” 

I guess the biggest one for me is the incorrect use of the word “cure.”  If someone says “cure” and it’s not in the context of research, fundraising or hope, it earns a near-automatic MS KIA badge from me.
I suppose that one positive thing I’ve learned about living with MS is that I just don’t have to make time for that kind of person, that type of attitude or that sort of emotional drain in my life. I’ve also learned that I can stop just about any MS KIA dead in the path of his/her illogical argument by saying: “Excuse me; I have to go give myself an injection.”

Have you run into an MS KIA? Do you find them a drain on your life?  Do you have a standard answer? We learn best from one another; we’d love to hear your views.

Wishing you and your family the best of health.

Cheers,

Trevis
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Trevis

Trevis Gleason, Blogger

You can follow Trevis via TrevisLGleason.com, his Life With MS Facebook Page on Twitter and on the EverydayHealth.com “Life With MS” Blog. And also, check out his bi-monthly blog for the UK.  

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    41 Comments

  • Heather   Nov 5, 2013 11:05 AM
    I have encountered the MS KIA repeatedly. My standard comment is "Have you been diagnosed with MS?" If I get a NO, I say "Then shut up", if they say YES, I follow up with "Do you live in my body?" End of conversation, every time, without fail! ;)
  • From the Fastman   Nov 5, 2013 11:07 AM
    I think maybe ....just maybe...the anacronym should look like KiA....I don't know anywhere near what I want to about MS as my love has MS so I'm learning BUT as an ex Army Ranger from way back (Viet Nam/Cambodia L.R.R.P.) I know a little about KIA's and I fear if (what I have learned about this affliction is true and limited in scope) that to even infer that someone with MS would be Killed In Action? (KIA) ...well it hurts my heart for my loved one and the others who may suffer from an illness with no known cure (YET)...I will fight with all my little powers to keep my Baby safe and supported and not...well I'm just starting...so sorry...just some thoughts...Living In Action seems to be what I garner from this website...I think you have a good idea...BUT...Fastman OUT
  • deannay  Nov 5, 2013 11:13 AM
    Oh yes, many witch doctor cures have been recommended. My standard answer is that if there were a cure for M.S. I'm sure my neurologist would know about it. Usually it works, accept for those who believe that the medical community is conspiring to keep us sick in order to line their wallets. For the other well meaning KIA's about friends and relative, I just say every M.S. patient is different, which usually leaves their mind reeling because they are unaccustomed to a disease with so much variation. My final answer is always, You know I've been dealing with this disease for 23 years and I really do know my own body.
  • Dennis   Nov 5, 2013 11:20 AM
    Keep reading ,keep learning, and keep interested in the cure.
  • pete wood   Nov 5, 2013 11:23 AM
    ms has got me down
  • Melissa Gauger   Nov 5, 2013 11:27 AM
    Thank you for writing this blog!! It is exactly what I needed today! I don't have any advise or best practices, but I can't wait to hear how everyone handles these people!!
  • Charles Liedtke   Nov 5, 2013 11:27 AM
    A lot of KIAs get their diseases mixed up. Like they start
    talking about Parkinsons or Muscular Distrophy like it is MS. Or they heard (on the web) that there is some new "miracle" cure for it that modern medicine is "dissing" (bee sting therapy). The worst is my family whose motto is; Working harder is the cure for everything, like I'm being lazy or something.
  • Michael   Nov 5, 2013 11:30 AM
    I have not MS, Heather. So read no further. My son has MS. I see him slowly fading away before our eyes. His last picture of health was a photograph of him as a graduate. Now he is almost ready for his wheelchair. Everyday I search for information from every corner of the globe for information on MS. from the Faroe Islands to Japan. When a possible trigger is not reported or hidden I have concerns. Multiple Sclerosis is a $multibillion industry and ifs its true that Clostridium Perfringens type B or D is the trigger, it can easily be erased from the body by injection or probiotic cocktail. I'm sure lots of major drugs companies would like this to be buried.http://weill.cornell.edu/mdphd/news/news_2010/rashid-k-rumah-first-auth.shtml
  • Michael   Nov 5, 2013 11:30 AM
    I have not MS, Heather. So read no further. My son has MS. I see him slowly fading away before our eyes. His last picture of health was a photograph of him as a graduate. Now he is almost ready for his wheelchair. Everyday I search for information from every corner of the globe for information on MS. from the Faroe Islands to Japan. When a possible trigger is not reported or hidden I have concerns. Multiple Sclerosis is a $multibillion industry and ifs its true that Clostridium Perfringens type B or D is the trigger, it can easily be erased from the body by injection or probiotic cocktail. I'm sure lots of major drugs companies would like this to be buried.http://weill.cornell.edu/mdphd/news/news_2010/rashid-k-rumah-first-auth.shtml
  • Michael   Nov 5, 2013 11:30 AM
    I have not MS, Heather. So read no further. My son has MS. I see him slowly fading away before our eyes. His last picture of health was a photograph of him as a graduate. Now he is almost ready for his wheelchair. Everyday I search for information from every corner of the globe for information on MS. from the Faroe Islands to Japan. When a possible trigger is not reported or hidden I have concerns. Multiple Sclerosis is a $multibillion industry and ifs its true that Clostridium Perfringens type B or D is the trigger, it can easily be erased from the body by injection or probiotic cocktail. I'm sure lots of major drugs companies would like this to be buried.http://weill.cornell.edu/mdphd/news/news_2010/rashid-k-rumah-first-auth.shtml
  • Jen   Nov 5, 2013 11:35 AM
    I have 2 standard responses to the MS KIA.
    If the KIA is obnoxious- I did not know you attended medical school, what university?
    If the KIA is making rediculous statements- I'm still upset that they never told us how to get to Sesame Street.
    Either one generally stops them in their tracks.
  • robin garvey   Nov 5, 2013 11:40 AM
    i know there's no "CURE" only management of its destruction to our bodies BUT IT MUST BE OBLITERATED FROM OUR CULTURE NOT MAKING A PROFIT FROM IT! its disturbing truly pissed daily cuz my left side wont behave it my cross to bare yet i have many peeps and family to help me sometimes its a curse cuz i'm an outspoken female whose not made her mark but im well known in my circles
  • ALEXIS   Nov 5, 2013 11:42 AM
    Thank you for this article. I was only diagnosed in January and as most of us do, found myself collecting books on the disease, how to live with it, how to treat it, how to eat for it, and finally, how to cure it. I was really shocked how much is published where the author blatantly states he or she cured their MS. It is usually for some simple reason, like not eating bread or having some expensive surgery. I've found that it is better for me to let the KIAs rant on and I trust my brain--my flawed, damaged, little brain--to take information and filter it appropriately. Just because someone is speaking does not make them correct.

    I wish wellness to all!
  • Mary   Nov 5, 2013 11:44 AM
    Completely agree!!! My MS is just that, mine and I always appreciate other peoples input but there is no cure until everyone is free from this disease.
  • tarbororms  Nov 5, 2013 11:49 AM
    Living with MS is a bold competition of you winning this battle each and every day from sun up to sun down! I have not crossed paths with MS KIA locally, yet. Over time, I will be questioned, this much I know. When that happens, look out. God bless all that meet this challenge! Don't stop moving that step forward!
  • Lindsey   Nov 5, 2013 11:56 AM
    While I understand your concern with know-it-alls and the claims of MS cures, I also think that disregarding any information that does not come from a neurologist may be missing an important piece of the MS puzzle. Many people have been helped by dietary changes, probiotics, healing their gut and similar "non-traditional" approaches. Neurologists are not trained in nutrition and understanding the importance of our gastrointestinal flora. Maybe there is a better way to talk about these issues - it seems the MS community disregards dietary change in favor of medicine and those following a non-traditional disease management approach poo-poo the medicine. Why not trying whatever you possibly can to live a healthy and active life with MS? I'm young an newly diagnosed so that is my approach. I just wish there wasn't so much negativity in the MS community for those that are trying something different outside of pills and injections (or in my case in conjunction with MS medication).
  • The Retiring Sort   Nov 5, 2013 12:27 PM
    In my experience (myself diagnosed 20 years ago, and my aunt. diagnosed 35 years ago and still managing with another level of MS), MS is like children - each case is unique. I think some people comfort themselves with being able to distill something as difficult as MS down to a few factoids they can deal with. I myself discontinued interferon treatment when some routine labs started showing side effects. I probably could have continued with monitoring, but that wasn't my comfort level. I didn't let other people tell me how long to nurse my children (although people I barely knew were sure they knew what was right for each of my very different kids with individual health issues), and I make my own decisions about my MS treatment, with guidance from my doctors and their staffs. MS is such a diverse disease, and can change so much with time. Only you will know how your body is responding to treatment, and in the end, only you can decide which treatment plans to follow. My best to you for your ongoing journey.
  • Laura   Nov 5, 2013 12:42 PM
    I was told by a relative that it was my fault that my MS is worse because I didn't become a vegan when she told me to and that her sister met somebody with ms who had been in a wheelchair, but she became vegan and got a personal trainer and now she can walk with no problems.
  • Bill   Nov 5, 2013 12:54 PM
    Excellent post. I too have had my share of experiences with KIA's. To be honest it makes my blood boil when then begin to enlighten me on a subject they know little to nothing about. Have they ever stopped to think that I what they were saying was factual and actual worked that the medical community would already have it? I have come up with a saying that just so happens to fit a KIA. It is as follows.. Better to have people think you are ignorant than open your mouth and remove all doubt.

    When conversing with a KIA I usually just nod my head and say yep. They will forever be KIA's and will be that way on any subject you care to talk about. The best cure for a KIA is when you see them coming go the opposite direction.
  • b   Nov 5, 2013 1:03 PM
    Once I told people that I had M.S. , most of them were very supportive. However, there's those certain people who like to give you more anguish than your already going through...One told me the woman across the Street had M.S. and they gave her 2 years to live. Another one told my children that I was going to die from M.S. I quit work to get away from the one. And the other one i chalk up to being jealous and stupid..REally? And I got rid of a KIA , who by the way has M.S. she really had no idea...I do not like people who are KIA....they really have no clue.
  • Rhonda   Nov 5, 2013 1:05 PM
    Spot on!Just diagnosed in June and I'm already sick of it! A well meaning person said a preacher had it and cured himself, my favorite, next runner up is people selling special natural products (I won't say what) that cures it.On and on.Thanks for posting that real people have a real disease and are realistic!
  • Embracing Life Embracing Change   Nov 5, 2013 1:22 PM
    1. I become very angry when people tell me that if I just lost weight or exercised more I'd get better. I am big but not obese and I walk a mile every single day! Even when my balance sucks and I limp my tingly legs back to my car to go home, I still do it. You don't know it all and it can put doubt in a hard working person when you act that way is what I wanna tell these folks!

    2. I had a friend who is also suffering from MS and she asked me an opinion. She said she was about to pick a third medicine. I asked which ones she had done and the first was Avonex. Her reasoning for stopping seemed sound to me. She was having flu symptoms and putting in a huge needle was not something she could handle. Then here is where I disagreed. She said she tried Copaxone. Symptoms did not get worse but didn't get better much either. She said this is why she wants to try number 3. I am on Copaxone and find that I don't always feel better but haven't had anything new happen. I told her to keep up with it for another year and get an MRI to see if lesions shrunk. She claimed not to have bad site reactions and I only told her what my doctor was going to do with me, and that this is where I got my advice to give her. Was this poor advice? Worse... was I inadventantly being a know it all? I said what I said because I know you have to be patient and thought that even if Copaxone doesn't make you better in the short term, it'd be good to see if it could work long term. Thoughts?
  • caterina   Nov 5, 2013 1:31 PM
    When somebody tells me they know someone just got diagnosed with MS I just say that everyone can have different symptoms and shouldn't be judged just listen and be caring
  • Roy A Teel Jr   Nov 5, 2013 2:28 PM
    Thank you for the blog post Trevis as always informational and interesting. I have read all the responses thus far and there is a running theme through all of them, the theme is anger. I have had MS for 18 years. I spent 12 years in MS research as a clinical research subject. There’s nothing more fun than having a doctor look at you and say, “We’ve never tried this in a human before so you need to tell us everything you feel.” I have been in studies that were successes and got FDA approved and others that were disastrous failures killing real people with MS and nearly killing me.

    MS is an incurable chronically degenerative disease of the central nervous system. There is no CURE and anyone who tells you that there is, is just plain ignorant. I have had many well wishing people offer me all kinds of diets, supplements and just plain bizarre treatments for MS. I thank them for their input and move on. One thing I have learned through my years with MS is to let go of the anger it will eat you up inside.

    My neighbor has MS, and she’s been in a downhill slide. I learned she had MS one day while walking with my wife. I saw her struggling with her walker and I offered to assist. She didn’t tell me she had MS I told her I have MS. Her eyes got huge and she asked how long I had been sick. We bounced ideas off each other and I’m happy to say that the conversation got her talking with her neurologist and some of the drugs I recommended she talk to her doctor about are helping her. I’m not a know it all, I have MS, I know the treatments that are FDA approved and what’s in the pipeline. I listened to her chief complaints and made some recommendations to discuss with her neurologist and in the end they helped according to our conversation since we first met.

    It is part of the human condition conscious of subconscious to try to help. I don’t feel that anyone bears any of us with this disease ill will. It’s very hard for someone to look another human being suffering and say nothing. So some people are over the top, others can be hurtful, who knows what their issues are. I have found it best to listen to everyone when it comes to MS; sometimes I learn something about a treatment, or a study that I was not aware of and I investigate.

    For those folks who speak foolishness I just smile and thank them for their input. I can count up on one hand how many people I have shot down or shut out in 18 years for speaking about my disease.

    For those of you just diagnosed, listen to your neurologist but keep an open mind to what other medical professionals have to say. While most MS therapies have side effects try to use them. Don’t go chasing after miracle cures they don’t exist you will only waste your time and money and still have MS.

    I remember what my neurologist at UCLA MS research told me when I was going to go off of Avonex after we got it FDA approved and I learned that I was in the control group for three years injecting placebo into my body during the study. He said, “Take the medication, it may not do a thing to stop your disease but then again it might. Remember, we can’t undo the damage that your MS is doing to your body when it attacks again. Just because you feel good today does not mean that MS is not attacking your CNS stay on the real drug.” I did for as long as I could until the liver effects were too great. I’m now secondary progressive and there is no therapy for me.

    Finally there is no conspiracy by big pharma to keep people sick. If that were the case then we would not have cures for diseases like polio, smallpox, rubella, certain types of cancers, or vaccines to prevent other deadly diseases. Also they wouldn’t be wasting billions of dollars looking for cures and doing research and development as well as clinical trials on humans with medications that might someday find a cure.

    It’s your MS, it’s your responsibility to be your own advocate and to, to be informed and in some cases know more than your neurologist. As many have pointed out in their comments their neurologist didn’t know about one treatment or another. That doesn’t make them bad doctors MS treatments are changing by the day it’s hard to keep up.

    My neurologist has been my doctor for 18 years and every time I see him the first thing he asks me is, “What’s new?” not just in my MS but in treatment options that he may or may not know about. He asks me because I am my own advocate I am usually a few weeks to a few months ahead of him on what’s new in the MS treatment world.

    Wishing all good health, and patience with folks who sometimes speak from ignorance but also good intentions.
  • Kim   Nov 5, 2013 3:00 PM
    My husband has MS and acquaintances are endlessly contacting me with magical "cures" to pass along to him. (I don't.) It's offensive, but I work at trying to take it as it's intended - most often it means simply that they care. The few true KIAs that just want to show-off reeeeeeeeally get under my skin.

    Love your blog!
  • Kathy   Nov 5, 2013 4:42 PM
    If the KIA does not have MS, I just nod pleasantly and go about my day. If they do have MS, and are trying to convince me that what I'm currently doing/not doing is "wrong", and their way of managing is THE way to go, then I get really irritated.
  • Denise   Nov 5, 2013 5:17 PM
    After getting tired of trying to explain to people that MS symptoms can come and go whether or not I try this new "cure", I now find myself smiling, saying "thank you, I'll ask my neurologist and see if she feels this will be the right thing for me." I have also found myself going down a different aisle in a store to avoid them. KIAs or LIAs can be very tiring and I don't always feel like dealing with their "helpfulness."
  • Avatar
    Quaker  Nov 5, 2013 5:22 PM
    After 26 years of MS, I am so tired of "every ones" opinion! Just as every ones MS is "theirs" and different; so is every ones opinion on treatment.
    The thing we should all remember is "to be kind to each other". We have enough problems.................................................
  • michelepairgin  Nov 5, 2013 5:44 PM
    I have run into many and live with one my 22yr old daughter insists I am just lazy and want to use Ms and My back fusions and am*****tion as a reason not to go to work so I actually have a t shirt comming that says until you hop on my one leg and be wheelchair bound for the rest of the hour in my shoe just shut tour mouth turn around before i go PTSD on your ass!!!!!
  • From: murphy   Nov 5, 2013 10:25 PM
    I have known many KIAs on personal and business levels.
    Most are very annoying to say the least. One new MSer's sister's KIA pushed and pushed an all natural supplement program at me that she swore was curing her sister of MS without drugs, because she was symptom free. (She is now in a wheelchair). I feel so bad for her. Drugs might have prevented or at leastdelayed this occurence in her life. Poor girl.
    Another KIA swore that if I gave up caffeine and sugar products, my MS would go away, at least my symptoms would disappear. Did she have MS? No. She just knew everything about everything!
    That is just a couple of the KIAs in my life.
  • Bob Scott   Nov 6, 2013 10:10 AM
    I find KIAs most abundant throughout the world of religion. Anyone who knows definitively God's will, or has all the answers, is high handed and arrogant at best and down right dangerous at worst.
  • Avatar
    A_J_  Nov 6, 2013 10:43 AM
    , the worse kia is the obne that also has MS...Her's is totally than mine, but she knows everything about everything. Take it with a grain of salt.
  • Bob VS   Nov 6, 2013 11:12 AM
    After reading all of this I have a couple of thoughts. 1 is I pray for better treatments and believe they will come. 2 is I tend to agree with the people who say keep an open mind and listen because you never know what you might learn, but to the KIAs please realize that unless you have walked a mile in their shoes you more than likely do not understand exactly how each person differs in the treatments that can help them.
    The biggest thing I see is we have hope and that hope is for better treatments and eventually a cure. Until then we can be their for those affected by it and be understanding of those that really just want to help.
  • Rena   Nov 7, 2013 2:41 AM
    MS is NOT FOR WIMPS !!! I find that a lot of people are just not interested in talking after they have asked and received an answer to the question as to why I walk with a cane. I now want to respond with simply, I have nerve pain that pops up unexpectedly...easier that way . MS has my mind boggled right now.
  • Avatar
    Cathy59  Nov 7, 2013 12:25 PM
    I am one of 5 children, and the only one who developed MS. Thirty years later they are all having their own old age medical problems and I just want to say "I've been living in an old person's body for the last 20 years and now you want me to feel sorry for you? Where were you all these years I was having problems. My one sister tells everyone "she's my legs" What a martyr!
  • catherine   Nov 9, 2013 6:37 AM
    I am a retired PT with MS and breast cancer. I used to KIA. I am learning tolerance. for those who still do. They have no idea what to say so they tell us whatever they can remember about MS. I believe they are trying to connect with us. Kinda "survovor's guilt". We can be role models. Give them a break. They have not yet hit their brick walls.
  • iamwrong41  Nov 10, 2013 3:22 AM
    First let me say about the Vietnam Vet. Thank you for Your service. I too am a Veteran of two tours. Welcome home my brother and the love you feel is genuine and honest. What fantastic human beings you both are.
    Back on point. I have been in medicine for 35 years, which means I have a lot of information. And I have had MS for quite a while.
    I do not know nor have ever read a comment of this person. This could be me.
    Ignorance can be fixed by knowledge. This may as well be a person who truly wants to participate in discussion. His regurgitations of what he knows, maybe just that. Put yourself into his shoes. He may be afraid and uncertain. So, it may be nothing more than to want to belong and he says what he knows.
  • Avatar
    sharkcollector66  Nov 24, 2013 10:26 PM
    Yes, I deal with a KIA everyday at work. She's also a one upper. No matter what's going on with me, hers is worse. She doesn't have MS. When I told her I was diagnosed with MS, she said "join the club". I've stopped talking to her because I can't stand that attitude. She has no clue what I'm going through, but if I told her, she'd be worse. She can't be the person that connects and talks about symptoms and tips to overcome them. Very frustrating.
  • This-Ability  Nov 29, 2013 8:20 AM
    Spot on article. These people can suck the air out of a room with their attitude. I just tend to ignore them. We all have our own crosses and trials and everyone's MS is unique. There are an estimated 2.3 million people in the world with MS. The questionnaire to join this site lists 22 possible symptoms. The maths is messy but it basically works out that there are approx. 500 trillion times more combinations of symptoms than there are people with MS. Experiences are great when shared but your MS is still your own and don't let any know it all detract from your personal journey and fight.
  • Jackie   Feb 20, 2017 11:07 PM
    Travis, I like who you are!You so elequintely expressed so many of my thoughts.Greetings and keep up the blog!JJ
  • terry   Aug 30, 2017 2:18 AM
    My husband has PP MS. He has twice spent all our savings on miracle 'cures' which didn't work. I believe that he is so desperate for a cure that it has effected his ability to make rational decisions. And I'm the bad guy that is questioning the crazy 'cures'; sometimes it's really really hard not to scream in frustration, at him and the KiAs.