Why Can’t We All Just Get Along?

The Unspeakable Bits From a Life With MS

I believe that most people with multiple sclerosis are really good people dealt a challenging hand by the fates and who are just trying to get through and help others along the way. Results of the most recent CCSVI study, however, have once again highlighted some rather nasty patient-on-patient treatment.


Over the years – and as social media interactions among people living with MS have increased – I have noticed some thoughtless, some insensitive and some downright rude behavior within the MS community… toward one another!

The recent internet uproar over Jack Osbourne and even reaction to a pharmaceutical donation to the Society in recognition of his Dancing with the Stars performance are another example of people lashing out at one another and at organizations trying to help us.

I suppose we could chalk some of it up to frustration. I know I get frustrated with my MS sometimes and the internet can be a relatively easy and anonymous place to let off some steam in a chat room or on a blog. But some of the comments I have read over the years have been far too sharp and pointy and very directly aimed for my taste.

“MS drugs are poison” or “they don’t work” isn’t helpful to someone looking for genuine assistance. And the way some people talk about how their positive attitude has helped them conquer their MS makes others feel like they are doing something “wrong.”

If something seems to be working for one person, it does not mean that it would work for everyone else, and it assuredly doesn’t give anyone the authority to push their point on someone else. But that doesn’t stop some people from shoving all the same.

I’m not what one would call a “practitioner” of any religious faith, but I understand what is intended and I appreciate the thought when someone offers prayers for me through my blogs or social media.  I am, however, always taken aback at the disrespectful comments that are hurled back and forth (from both sides of that topic) as soon as religion and MS is brought up. Seriously, I don’t mind someone offering healing thoughts for me; do you?

A recent blog discussion about issues surrounding death with dignity had people actually telling others how (and why) to live their lives with MS in a manner that went far beyond impolite and into the realm of arrogant.

Sometimes it feels like there are people just trolling the internet looking for someone to poke. My editor once told me, after a particular set of nasty comments, that “people seem to write things they wouldn’t say to your face … when they know you can’t punch them in theirs.”

It’s one thing to have to hear the litany of insensitive comments from those who have no idea what it’s like to live inside of this MS bubble.  To be attacked from within our own ranks is beyond the pale.

I’ll admit that some may lump me into the category of offender as I have always been what I call a “hopeful skeptic” of CCSVI and the “liberation” therapy and have not shied away from voicing my concerns.  I have, however, moderated my tone to make sure that it is no longer categorized as offensive by most.

Living with this disease has enough challenges, without us adding to them. I’m not saying “if you don’t have something nice to say, don’t say anything.” What I’m trying to say is that none of us is an expert in MS. If we’re an expert at anything, it’s at living our own lives – not anyone else’s life – with MS.  None of us knows it all, so we shouldn’t act the MS know-it-all.

We’re all in this boat together. Why can’t we all just get along?

Have you run across people being beyond rude online about your MS? How do you deal with it? Do you think you might be guilty of being rude sometimes?  How do you keep your feelings from being hurt on the interweb?

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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    34 Comments

  • LAURIR GAR   Sep 26, 2013 10:13 AM
    Very true. MS is not the same for every one who is diagnosed. I have a little bit of memory slips which I compensate in many ways by reading and taking classes,
  • Femser   Sep 26, 2013 10:14 AM
    I have recently come across more than one nasty MSer on an MS Support website. Their nasty attitudes, condescension and general lack of support has led me to really back away from a site that I had previously found very helpful. I come back to visit once in a while but always post comments and questions through a filter as I am wary to directly deal with their bad attitudes and rudeness.
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    amyfred  Sep 26, 2013 10:19 AM
    I wholeheartedly agree. There are forums I just won't read anymore that I was hoping would be helpful to me. Turned into a big downer, to be honest. I needed support to keep my spirits lifted! There's enough negativity in the world, I don't need it from what should be my support group. I've since looked elsewhere. Everyone living with MS should realize it is different for everyone so not all treatments will work for everyone. I'm new to this (only a little over a year since diagnosis), but that much has been clear from the beginning. Thanks for the blog Trevis! Here's to your health! :)
  • Kim   Sep 26, 2013 10:20 AM
    Thank you for this.
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    sjwest  Sep 26, 2013 10:30 AM
    Thanks you for this. I only hope some will see them self in this and maybe think twice before saying something mean or nasty .
  • Kemi Olugemo   Sep 26, 2013 10:39 AM
    Thoughtful and well-written article, Trevor! I tend to agree, that the etiology of the negative comments you refer to is likely frustration. As an MS- Doc and Researcher, my overwhelming experience is that patients, caregivers and friends are supportive of each other. It is true; individual experiences are different, and MS is most likely a syndrome, rather than a distinct disease.

    An open forum (online) is necessary, and hopefully, with a little redirection, we will all unite to the common goal of discovering neuroprotective therapies and ultimately a cure for MS.
  • MOLLIE BAILEY   Sep 26, 2013 10:49 AM
    My problem is my neurologist. He was very rude to me this last visit I had to go because I am having terrible tremors in my hands, arms and legs. He said that this was not a relapse, that a 64 year old woman (me) does not have the problems you say you are having. Yes, you have MS, but your mri's so no change. You want to see MS, I will show you MS. He told me to get out of the electric wheelchair that he suggested I get. I only use it for long distance, I am not in it all day. He wouldn't listen to me at all. In fact, he didn't even look me in the eye while he was talking. He said you need PT, which he had ordered and I completed the last of it the day I had an appointment with him. I feel very confused and hurt. He said things that are just like what normal people say to you. oh, you look fine you can walk you can still do things. ha if they watched how I have to cook in stages because I can't stand any length of time. or see the cuts on my hands from using knifes to peel potatoes etc. makes me feel worse than ever. I am looking for another doctor.
  • Jeff   Sep 26, 2013 11:08 AM
    Keep a positive attitude I say, why you ask, Things could be allot worse, like no longer breathing. Somebody always has it worse than me and it does allot for me mentally to keep my spirit high.
  • mary   Sep 26, 2013 11:17 AM
    I so relate t the comments.I'm a 36 yr old female. I've been living with MS since 2004 At one time I was on inc...but the last few years nothing so I can't be on the meds I use to be on .I try to look at sights to get help but get treated as I'm stupid cause I don't understand things like I once did so I to the point I just give up on gettin the help I need! People just don't have the heart ne more to help....they don't understand MS and how its differant for everyone, just saying people do need to wake up
  • Jenni   Sep 26, 2013 11:23 AM
    As a newcomer, I've seen some of the negative comments and was disappointed that people would do that to each other. My husband is about as supportive as a wet noodle and I was hoping to find a compassionate group here. For the most part, there is, and I thank each of you who are for that. It's not easy to talk to someone who doesn't understand what the heck's going on (not that I do!) and have found a lot of useful info from those of you who've "been there". It's been a pity party of one for a few months, but I'm getting there. Chins up and forward move! Have a great day, all!
  • From murphy   Sep 26, 2013 11:24 AM
    As a blogger, be careful to read and heed what you write and to go over what you have written to make sure it isn't offensive!
    As you said, NO one is a no-it-all.
  • Jannette Crumrine   Sep 26, 2013 11:25 AM
    I have been diagnosed since 2008 and I must say it has been a roller coaster ride for me. Like any illness there are the different stages you go
    thru. It starts with disbelief and trying to live the same way you did then anger which in itself can form so many different ways. I was a baton and dance teacher. The anger for me was frustration of just doing things in which I never sat down whether it was teaching or working an assistant managers position in a jewelry store to maintaining my home plus taking care of my mother at that time. The anger in so many people has turned into an emotional turmoil of " why me?" to I am finished and I can no longer function as a human being. A positive attitude is so much easier to deal with than anger which is within each of us. Get up in the morn and be thankful for what you have. How we handle difficulties in life are seen by so many and for me I want to be an example for others who are going thru there own demons. For me I read scriptures and pray and spend time helping others who are having a tough time just functioning day to day. Always feed yourself positivity. We cannot be around negative people or circumstances that affect our emotions. For us that is destructive. That is huge! Yes I still have my bad days so I sit and read or talk to my friends. It will not run my life for I am thankful for being alive and for my journey here on earth no matter what I am going thru. God Bless
  • Sandra Skalba   Sep 26, 2013 11:32 AM
    I also was on an MS "social networking" site to learn about different treatments/therapies/tips and decided to pull out of the site. I was amazed at the way some of the people treated each other and ganged up upon other people. Although, admittedly there were even more genuinely nice, caring people on there too. Just a few bad apples I guess. I have only been diagnosed a year and a half ago and decided I am not ready for that type of "support" group. I have also attended some dinners for MS patients and found that many people seem bitter (which is totally understandable), I am just not at that point yet and hope to not get there. My family and friends are very supportive and I am doing fairly well with my therapy of choice. Just focusing on enjoying every moment and trying to stay positive and active at this point. Who knows what tomorrow will bring. Thank you for your insightful blog today!
  • Yvette   Sep 26, 2013 11:32 AM
    I have had MS reaching a decade and fortunately I know my life could be a lot worse however I am a lot more sensitive and critical on myself. MS takes a tole on us mentally and physically. When the people you love and have to live with this illness right along side of you, can be less patient with continues symptoms. It's hard when something is said that hurts my feelings, it tends to take me all day or days to bounce back from that.

    Illness and negativity can not be controlled by anyone. l would rather be by myself than have to deal with drama in my life however I am realizing I am missing out on a lot of wonderful things with my family. I have to be less sensitive and more patient with people that do not experience this horrible debilitating, lifetime, incurable disease. You would think that would be enough for people to be positive around you, appreciate they have their health and do not have to experience all things MS puts us through.

    In life I have learned if you do not have a positive attitude about your health, where ever it is at, you really have nothing but disappointment. I'm 52 and have a long life ahead of me. I can not waste my time being negative or people that are. Easier said than done however not impossible.
    People with MS can always use a cheerleader in their life!

    Sending love and good thoughts to those of you who do not understand word cut like a knife.
    XO
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    HannahFTW  Sep 26, 2013 11:44 AM
    I have experienced this on several different online mediums and it really upset me because I never expected it coming from other MS people. I'm the kind of person who understand that each of our MS experiences is completely unique and thus I only discuss what I have tried. I do not try to push my own ideas on others but rather just offer suggestions that worked for me. I always leave it up to the individual to do their own research and talk to their own doctor to find out what works for them. That being said, I have encountered these very rude and closed minded individuals. There is NEVER one right answer when it comes to MS, though we all have our own opinions! I had to leave several communities because of harassment and rudeness. It no longer felt like a safe place to share but rather something I was getting bullied for. And no one seemed to care so I just left. I just want everyone to get along as well. That's just not how it is.
  • LAURIE GARVIN   Sep 26, 2013 11:59 AM
    I have never been rude online, I just have many in my family who will not respect my wishes. I am disabled but I HAVE RIGHTS
  • Tony   Sep 26, 2013 1:00 PM
    Right on Trev. Wise words. I totally understand why some feel the way they do, but that does not give them the right to criticize others for how they choose to treat their MS. I talk to fellow patients about having a positive attitude and, very occasionally, will meet a guy who resents any talk of positive attitudes and disparages anybody that has one. They are extremely negative and intent, it seems, on bringing everyone else down with them.
    We just need to avoid these people and internet trolls as much as possible, have a thick skin, and continue doing what we (and our doctor) think is working regardless of what anyone else says.
  • Paul   Sep 26, 2013 1:08 PM
    While i think it's terrible that people with MS would be un-kind to others with MS on blogs and discussion groups, I think that's just a fact of life when it comes to the internet and it doesn't seem to matter what the topic or community. People are incredibly rude in any online discussion topic, whether your talking about Star Wars movies or how to properly discipline your misbehaving toddler.

    Some people have very little emotional intelligence and do not know how to have a productive discussion with someone they disagree with. The anonymity of the internet makes it worse. If anything, I would expect the deep personal struggles we all face with MS would only make this problem even worse than that.
  • Linda   Sep 26, 2013 3:18 PM
    What we need to remember is everyone is different, MS effect everyone in different ways.The impotent thing to do is to keep living your life the best you can.You will be doing actives different then before,but just go a head and do what ever you want and don't leave anyone tell you that you can't.Because it is different.
  • Debi   Sep 26, 2013 3:58 PM
    Thankfully, I have not experienced a lot of negativity towards me with regards to my MS. My treatment was interrupted by cancer 8 years ago. I lost a lot of, what I thought were, "friends" of mine, as though I was contagious. Fortunately I still have the capacity to tell the difference between healthy and negative relationships, on whatever level. We are unique, not because we have MS, just because we are. Removing ourselves from negative situations or relationships is something we should do regardless of our physical or mental status. I enjoy reading comments from others, because I see so many success stories. I am not a victim of MS any more than I was of cancer. Regardless of what we do with our lives, those are mere components of the big picture of who we are. I am Debi. I get up every morning, assess my status, adjust as necessary, and live my life. I have created a healthy, wonderful support system, because that was right for me. I have a beautiful daughter who checks on me every morning and every evening, while respecting my choice to live independently. Everything we say or do is a choice. MS is not a cookie cutter disease. What works for me may not work for you, but I would hope that we could honor one another by listening to what the other has to say. That is common courtesy. Trying to push one's opinion on others only works if we allow it. I live each day with love, respect, courage and dignity. I do that because that is who I am. Everyone has their own demons to face, and that includes the bullies in life, whether they be in the next room, or an anonymous chat participant. At the end of the day, I want to be able to say that I lived my life without regret. We have no control over what others say or do, but we do have control over how we react to them, and how it effects us. I do not consider myself a victim, and yes, I have survived, but prefer to call myself a thriver. I have MS, but I also have brown hair and hazel eyes. Peace and love to all. :)
  • renee lachapelle   Sep 26, 2013 4:18 PM
    I noticed also that some in the fb MS groups were constantly posting inflammable remarks against other posters in the group. I do not wish to read their petty complaints or read of ads for stuff that cured others of their MS. Hey whatever works for you might not work for the rest of us.
    I stopped posting on comments that do not apply such as ones concerning DMDs. I don't have experience with this drug type. And toned down my replies as well on most of my posts. Dropped the groups that had infighting and too many disparaging comments.
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    KateAlm57  Sep 26, 2013 5:05 PM
    Ive had MS for 25 yrs. SPMS for the past 4 yrs. I still have to be reminded of some of my "emotional pain bodies" ocassionally & thank Creator for reminding me its my pain feeding it not anyone else. One second at a time, and inner peace I can get through anything. There isnt room in my life for negativity or fighting. Life is too short folks...Love,patience & compassion for others is key for me to cope & function at my best, whatever kind of an ms day it is. For those of you with less symptomatology than others, we should be g rateful, those of us who suffer pain and inabilities to function, we need all the love, acceptance and patience we can get. Shame on you if you verbally bash or attack one of our own, we are all fighting this ***** disease TOGETHER no matter how severe or mild our symptoms might be. Everyone needs to own their own battles while respecting the dignity of our brothers and sisters in this WAR called MS!
  • Mike Russellm   Sep 26, 2013 5:12 PM
    As always a very well written piece which hopefully will make people listen up. Although we all have our own thoughts on treatments, how we live with MS what we shouldn't do is force it on others.

    Lets all be respectful and caring of others. How they feel and how they live their life. As Trevis mentioned "can't we all get along". Come on people lets work together, not against each other, and concentrate on a cure and not hate!
  • Katie   Sep 26, 2013 5:25 PM
    Trevis,

    Again, well written. Fortunately, I have not had a lot of negative comments online regarding my MS. I agree that (some) people like to troll and leave snarky comments in a public forum because there is no negative ramification for them.

    I have been told by certain religious people that my MS can and should be prayed away. That if I had enough faith, I would be miraculously healed. I even had one woman offer to pray the demon causing my MS away.

    When someone gives me advice on what to eat or how to treat my MS, I smile and say thank-you for the information, whether I intend on trying what was advised or not. But when someone infers that my life is somehow not good enough and therefore I have MS, I must confess my heckles raise a bit.

    Thank you for speaking out about this topic. I think we all can bear this in mind when using any online forum, be it about MS or another theme.
  • Rachel   Sep 26, 2013 5:36 PM
    MS has pushed me towards misanthropy. I see what people are really made of...
  • Roy A Teel Jr   Sep 26, 2013 6:02 PM
    As a person who has been battling this disease for over 18 years and who spent a dozen of those years as a human research subject in clinical trials for drugs from Avonex to Copaxone and a lot of failed experimental drugs in between. I have found it better to stay away from the chat boards and commenting altogether.

    Folks will always have their opinions and they have a right to them, but I think in most cases those opinions are better kept to ones self. As Trevor say's, it is enough to deal with my own MS and its progression everyday; I don't need to add or have added to my own life rubbish that isn't valuable and that will only aggravate me or others.
  • Chris Risner   Sep 26, 2013 7:02 PM
    Thanks for your comments. They are needed! Just hope the people who need to see them, do.
  • Tamia Jones   Sep 26, 2013 7:54 PM
    MS, can be cruel by it self so why be cruel to each other. We all will never be the same at the same time. MS is a spontaneous illness , each day is different and a blessing. I have had MS for 27 years and had to learn to take it as it comes. That has not always been easy , the last therapy I was on did not work well, I will not give the name because different things work for different people. I will start a new therapy soon, I was hurt and bothered by that outcome but I did not take it out on anyone. We have to pick out battles and mine is against MS. I will fight for my family for my life.I looking for at least another 40 years that's my fight. I have MS it does not have me!!! Let us help and encourage each other ,tomorrow may not be promised and it can be different, better or worse than the day before that's better than nothing at all.
  • Cecilia   Sep 26, 2013 9:16 PM
    I do try to appreciate the frustration, even the loving frustration, that comes with any discussion of the unknown.
  • Kim   Sep 26, 2013 9:34 PM
    Appreciate you saying this. Thank you :)
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    babydoll132266  Sep 30, 2013 7:43 AM
    Maybe I was raised differently...my mother always told me to treat people the way you would like to be treated....I don't understand why people are hateful..I am thankful for this site..it has helped me understand a little more of what I'm going through and that I'm not alone in my struggles...
  • LAURIE GARVIN   Sep 30, 2013 3:16 PM
    I have not had that experience and I WOULD NEVER TREAT A PERSON IN THAT WAY. I TREAT PEOPLE LIKE I WOULD BE TREATED
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    Quaker  Sep 30, 2013 4:07 PM
    I have noticed, on some MS sites, where people get in hissy fits over what someone has said. I think it may have to do with talking, with someone who "DOES" understand.....
  • cathy   Oct 3, 2013 4:59 AM
    Well said Trevis!