Skip to Accessibility Tools Skip to Content Skip to Footer
When MSers Shame Each Other

When MSers Shame Each Other

While talking to other people with multiple sclerosis, I’ve had several tell me some disturbing stories about how they felt shamed by others. Not by healthy people, but by others who are also battling the disease. I’ve seen it myself a number of times on social media and planned on addressing it in a future article of mine. Then, just a few days after that, as if fate was telling me to address it sooner, I had a run in with it myself! MSers shaming other MSers, it happens often and it’s despicable.

The MS community is one that relies heavily on social media. From Facebook groups to Instagram to Twitter hashtags, social media is a very important part of having multiple sclerosis. Let’s face it, you don’t always live close to others fighting the disease, but you still need to talk about it to someone who understands (as they say, “you don’t get MS until you get MS”). Even if you do live close to others, a disease that features a number of mobility issues can make it hard to go meet up with people. In addition to that, more than most diseases, MS really requires a lot of self learning and advocating. Great neurologists are sadly very few in number, so there is a tremendous amount of information sharing that happens patient to patient.

As has been mentioned often, multiple sclerosis is a “snowflake” disease, meaning each person with the disease can have wildly different symptoms. I think a lot of us preach that, but often forget it when dealing with each other. It’s understandable, the disease can impact our lives so heavily that it’s easy to lose sight that another experience may be different. One of the more common problems I see is also an issue we get from those without the disease: pushing a method of treatment on someone. Again, it’s understandable that if you are so happy a treatment works for you that you feel the need to tell others to try it. We have to remember though that we are all different, and what works for some may not work for others. If there is one thing I’ve learned in my 16 or so years with the disease, it’s that finding a treatment that works can be a long and very individual journey. Every treatment has a different effect on people and the only way to figure that out is by yourself. So while it’s great to say, I do this and I feel great, remember to not push it. There is a fine line between sharing your experience and pushing your experience. That fine line is very easily crossed on social media, when determining the tone of someone’s words can be very hard (harder still when you factor in our cognitive issues). It’s very easy to suggest something and have it make the person feel bad and ashamed because it didn’t work for them or because you thought they didn’t try it already. Bottom line, a person’s path of treatment is a very personal and individual journey.

Now, let me tell my story. As I’ve been writing here, I’ve gained friends and followers on social media. This, to me, is fantastic! I want to meet others battling the disease, I want to talk to them, I want to share my life with them. I’ve been at this a long time and I feel that I have something to offer, even if it’s just being an understanding ear that will happily listen to someone vent (we all need that). It’s helpful to talk to someone who has dealt with the same issues. I didn’t have that when I was first diagnosed, so I understand the importance. I want to be that for others, I want to help. Now, if you’ve read my articles, you probably notice that I’m pretty open about things, from peeing my pants (cause peeing your pants is cool right?) to contemplating suicide, I have little to no filter. My social media is like that too, with maybe even less of a filter (if that’s possible). So you’ll see the good times and the bad, and maybe it won’t fit with your picture of how I should live my life. That’s ok, as I’m sure my wife would say, I’m not for everybody. However, if you don’t agree with how I live my life, you can’t go ahead and try to shame me about it. You can’t tell me you are disgusted with me and that you are not as inspired by me as you thought you might be. I’m going to have days where I feel like crap and I’m confined to my couch with my awesome dog. I’m also going to have days where I do feel good (yes, that happens) and I go out and have fun and maybe even have a couple drinks. I may even post pictures of that, because damn, I feel normal for a few hours and I’m happy and proud of it. Those days are a lot fewer now and I make the most out of them when they happen. Let’s face it, most of us tend to post mostly the happy stuff on social media, so what you see may not be complete reality. And trust me, I’m not doing anything my doctor hasn’t approved.

Now with all of that said, no filter or not, you still don’t see everything. No one ever does and that’s where social media can really cause some problems. Not only for me, but for everyone. I have seen others with the disease make comments about how another person shouldn’t be doing X, Y, or Z because that’s unhealthy and if they did that blah, blah, blah. Stop, and please remember that snowflake discussion from earlier, we’re all different. It wasn’t long ago that using marijuana would have been considered terrible and unhealthy and now it’s a savior for many with the disease. Similarly, I’ve seen more able bodied MSers make comments regarding physical activity to other less active people with the disease. Let’s all remember, again, that we aren’t all the same. Also remember that things change. I’m not super active now, and it kills me, but this is a fact of life with MS sometimes. I was still training for marathons in my first decade with the disease, but years and relapses have caught up to me. That happens to a lot of us, so please keep that in mind the the next time you say “you just need to be more active” to someone.

Lastly, I’ve seen and heard about some MSers picking on each other about raising awareness. Believe it, this is actually something that happens and something I’ve noticed a few times now. People are literally competing with each other and trying to trademark things like “challenges”, memes, images, and other forms of awareness. To each their own, but really? It’s extremely disheartening to me that anyone who has really felt the wrath of this disease could ever object to someone else, anyone else, doing anything to help raise awareness. No one should have the goal of being an MS internet celebrity. I personally think your only goal should be helping people and raising awareness, but that’s just me. Hopefully I’m just understanding some things wrong and that’s not really the case. So again, let’s all try to remember that we are all different. Same disease, different lesions, different bodies, different symptoms, different treatments, but hopefully all the same goal of finding a cure! Remember, the disease is our enemy, not each other!

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The MultipleSclerosis.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

  • Jade1956
    3 years ago

    I am getting really sensitive about this and I speak out about it wherever I see it. I’d like to say don’t take it personally, but I do. I am not an MSer. I am not an MS person. This disease does not define me. I am not about MS. It is not my life or my definition. It’s a disease. That’s all. It’s just a disease. I realize it’s easy shorthand, but I see it as a put down. I see it as lumping us all into a disease. We are not MS. We are funny, and happy, and sad, and smart, and slow to learn but happy to learn, and educated and scornful of education, and parents, and children and brothers and sisters and nieces and nephews and talented and just plain good at all we do .. we are people. We are not a disease.

  • Devin Garlit moderator author
    3 years ago

    Very sorry you are upset. That was certainly not the point of the article, if the term “MSer” offends you than I’m sorry. I’ve seen in many places and in 17 years with MS if has not been until this article was posted that I ever seen anyone upset by it. I’ve always just seen is as shorthand for “someone who has MS”. Understand that there are many people who are proud of their fight with MS. Many that see it as a large part of their life(including myself: https://multiplesclerosis.net/living-with-ms/ms-ms-sort/). As I’ve said, it’s very much a positive thing for many people. Regardless, I’ve learned some people don’t like the term and I’ve stopped using it.

  • MJRmsWARRIOR
    3 years ago

    Earlier this year I was in the hospital for one and a half months for pneumonia & sepsis from not being able to fight off the flu, in critical condition. I have primary MS and it is worse in my arms, hands, and shoulders, which makes it very difficult to shower. I asked an aide to help me bathe while in my bed because I was very weak, and the registered nurse standing nearby stopped the aide who was helping me and told her that I should be able to do it myself. I then explained to the nurse that I have MS and my current illness was making it worse, and I needed help and could not do it on my own. Well, the RN and I got in a fight about it, she had the nerve to tell me that she has MS too and look what she was able to do (be an RN). She was comparing her MS with mine, primary, of 32 years! I then asked her what her symptom were, and she didn’t have the vertigo, coordination and balance issues, severe heat intolerance, spasms, cognitive issues, double vision, cranial nerve palsies, SEVERE debilitating pain & fatigue, etc., that I experience, she said she only had pain in her legs sometimes. I was flabbergasted that an RN wouldn’t know not to compare her MS experience with someone else’s, especially a patient’s, as MS doesn’t present exactly the same in everyone. Actually, I have been in the hospital in critical condition 3 times for the same thing in 2 years, and every time the nurses and/or aids fail to understand that I need help bathing and also cannot bathe every day, as it is too taxing for me. Has anyone else ever had issues with hospital staff and bathing due to weakness/pain/fatigue from MS?

  • Jade1956
    3 years ago

    I am happy to say that our local hospital has an awareness that just amazes me. I was checking in for epilepsy screening and I explained to the CNA that I’d really like a shower because I had had two seizures in the very pajamas I was wearing. I told her that showering means taking off braces to sloppy useless legs and with osteoporosis active, I needed help shampooing, etc, and she listened with that flattering attention, nodding, and when I was clearly done, said, “Well, that’s how we’ll do it then. Are you ready?” I told her I was and it went exactly as I had said it needed to. The next day after 10 lab tests, another CNA asked if I wanted a shower and I said, “I do, but I don’t have the strength for one.” She said if I had to have all those tests, I wouldn’t either. How about a bed bath? I said yes. I think in part we have to train our providers and talk to administrators when we have problems, and more importantly, when we don’t. I took a five pound box of truffles to the floor after I was released.

  • Devin Garlit moderator author
    3 years ago

    MJRmsWARRIOR, I am so sorry to hear what happened to you! I hope that you were able to report that RN! I have not had that specific issue in a hospital (but maybe one of our fellow readers has). I would absolutely speak to the hospital administration about it, that is no way for a nurse to act, regardless of her situation. That certainly does demonstrate some of the mindset that we unfortunately see out there though. Thank you for sharing this!

    I have trouble showering, but nothing compared to what you experience: https://multiplesclerosis.net/living-with-ms/the-unexpected-perils-of-showering/

  • Rachel
    3 years ago

    Thanks for your articles-I love them,this one and the ” I have MS…” one especially,which I wanted to give very positive (!) feedback on. I truly agree here! -ooh,and both old timer MS EE’s -diagnosis for me 17 years ago I think.Well,that’s quite a conversation closer actually! Hmmm,best regards,Rachel.

  • Devin Garlit moderator author
    3 years ago

    Thank so much Rachel!!! I am always happy to hear that, thanks for reading!!

  • RevTammieHartsock
    3 years ago

    I am One of those MSers who have been Shamed & even Kicked-Out of a MS Support Group because of My Faith in God. For Me, If it wasn’t for My Faith in God, I wouldn’t still be here & I couldn’t make it through one Day! Maybe Faith in God is not for Everyone but it should be as “Faith Does Matter” along with many other things like some kinda of exercise, pain medications, meditation, talking & sharing with others, etc …

  • Theater Geek
    3 years ago

    Wonderful article! 🙂 I’ve seen some shaming in online groups I’m in but luckily have yet to be on the receiving end. I’m with you…we need to support each other not attack each other. We, of all people, should realize what works for some may not work for others. For me, other than medication, theatre helps but that doesn’t mean theatre is going to help everyone. Not everyone wants to stand up in front of a bunch of people and do some things that can look quite weird or strange in some cases (tap dancing nuns anyone?) so in turn theatre would be worse for them. Saying something like “This works for me…but it may not be for everyone.” is a better approach in my humble opinion. I’ll have to look you up on Facebook Devin and add you as long as you don’t mind theatre post lol. 🙂

  • Devin Garlit moderator author
    3 years ago

    Thank you Theater Geek! I wholeheartedly agree! And of course, feel free to look me up on Facebook!

  • pmdpeace
    3 years ago

    Devin, “you may not be for everybody” but your honesty is certainly for me!

  • Devin Garlit moderator author
    3 years ago

    Thanks so much @pmdpeace! Always happy to hear that!

  • J Bel
    3 years ago

    Hi Devin. I’m new to all of this and to say it’s overwhelming and scary would be an understatement. My younger brother was diagnosed five years ago, and let me just say, after reading your bio, you remind me of him so much. He even has the shirt you’re wearing “this guy needs a beer.” I had to laugh! I was diagnosed recently and it’s been tough because as much as I want to talk to my brother about it, he is the type that kind of wants to “forget” he has it, which I completely understand. But that leaves me with no one to talk to who knows first hand what I’m going through. I love reading your articles and would love to know how to follow you. I have Facebook and Instagram, but no Twitter. Thanks for making me feel less alone out here!

  • Devin Garlit moderator author
    3 years ago

    J Bel I certainly understand how your brother feels, I was once that way too, ages ago. We all handle it differently I suppose. I’m glad you like my articles, means a lot to me. You are certainly not alone and feel free to friend me on facebook or message me here if you ever want to talk!

  • Julie
    3 years ago

    I have moderated a group for the past 15 years. I love these people. We have been thru births and death, relapses and strength gained. Several of us have actually met and spent time together. We all have our different opinions and disabilities.

    What I wasn’t prepared for was several years ago when Mitt Romney was a presidential candidate, his wife has MS and had given several interviews where they asked about her disability and what she did for exercise, etc.

    A couple of the women started talking about Mrs. Romney’s “privilege. Nasty comments flew back and forth about how she can afford to have MS, she gets “good drugs” that aren’t available to us.

    I was shocked! I told them that it is apparent that MS isn’t selective about who it hits. It hits everyone, rich, poor, black, white, man, woman and I was disappointed that they would talk so nasty about a fellow MS’er! Not much was said after that. I think everyone realized that it doesn’t matter who we are or what we do for a living, who we are married to or not married to.

    This has been one of my most memorable encounters with those of us with MS bad mouthing or shaming another. We should all be holding each other up in support, God knows we are not understood by those without MS, we are the only others that “get it”.

  • Devin Garlit moderator author
    3 years ago

    Julie, thank you so much! That is a perfect example! I’m happy to hear that spoke up, sometimes people just need a reminder. Thank you for sharing that!

  • tfs
    3 years ago

    Devin: I always read your posts. Love ya! Main point I want to make is this has happened to me. It knocks your socks off, and the only solution is to set clear boundaries with other people. We also need to be very compassionate: chronic illness narrows perspective sometimes because of a myriad of reasons. Isolation, depression, cognitive issues, fatigue, etc etc… I took the summer off. This fall I find I am putting my energy where it needs to be. Pros of Cons for every group need to be individually weighed.

  • Devin Garlit moderator author
    3 years ago

    Thank you tfs! You are right. Some compassion can go a long way. But it is easy to lose sight of, even when it’s often what we are looking for from others. This overly hot summer was probably a good one to take some time off! Thanks so much for reading and commenting, it’s always very appreciated!

  • Lisa
    3 years ago

    Thanks for this. It is a bit confusing to me that I feel shamed by other people who have MS for being too able-bodied (Just try to be inside my cognitively impaired brain). I’ve got all sorts of other invisible things going on as well.

  • Devin Garlit moderator author
    3 years ago

    Thank you Lisa! It’s very strange that the people who should understand the invisible nature of our illness can still shame others. No one should know the phrase “you can’t judge a book by it’s cover” better than someone with MS! Thanks so much for reading!

  • Azjackie
    3 years ago

    Thank you for another great writing. We ARE all very different.

    I’ll sound like a broken record for a moment, sorry, each person has over 100 billion neurons. The myelin can be “scarred” anywhere on the neurons. No wonder we are all different and one medication or cure hasn’t been found.

    MS sites have been very helpful to me. I originally felt I was the only one. Very isolating.

    I am happy and even jealous when others feel great. Something I have to work on…

    I just ask others to just listen and be considerate of others.

  • Devin Garlit moderator author
    3 years ago

    Thank you Azjackie! If folks would simply stop and listen, it’d be a much better world! As always, thanks so much for reading!

  • deadbrainwalking
    3 years ago

    People don’t just push treatments. The most nasty and degrading comments I’ve seen are when people push against treatments. Someone may say that they’ve had great success with X medication and suddenly dozens of comments pop up that the person should not speak so highly of X medication because it’s nothing but poison and the best decision they ever made was to stop taking all of their meds.
    Why is it that a person will be shamed for sharing their success with the use of a medication, but those same people who shame them for touting the benefits of what they consider to be a dangerous approach to treatment feel comfortable touting the success of what others may feel is a dangerous approach: discounting all meds?
    It’s very frustrating to me, particularly because a lot of newly diagnosed people come to social media to ask questions about potential treatments, and the au natural proponents tend to be very outspoken and aggressive, but they also often say that they tried dozens of different medications for years before deciding to discontinue meds, so why aren’t others allowed to take that same approach and try treatments for themselves before deciding whether they wish to continue that line of treatment? It’s extremely frustrating.
    Because of this competitive attitude and negative atmosphere, I’ve all but quit reading posts and answering questions on social media sites, and even post less frequently to my blog. It’s stress that I really don’t need.
    DarleenM: with regard to the term MSers. I do understand why you dislike the term. I worked in mental health for years before I got too sick to work and there was a battle being waged between workers and advocacy groups to use more positive language. One point in particular was to not refer to clients/patients by their diagnosis; schizophrenics, depressives, bipolars. As both a patient and a worker I fully understand why such language is harmful to that person’s treatment and recovery, and hurtful and insulting to hear.
    However, there are other instances where disenfranchised groups have made strong efforts to release the stigma attached to previously denigrating labels and pejoratives. Most notably the gay pride movement, where words such as gay and queer are being used openly, with pride.
    For the term MSers I can say that at least that is OUR term. It wasn’t foisted upon us by the medical establishment or society, it’s something that was created by our group. It is partly a term of expediency, but I also tend to think of it as a term that unites an extremely diverse group of people. As Devin states, it’s a “snowflake” diagnosis, no two sets of symptoms are the same, yet we all still have MS, our symptoms are all due to the same root cause, therefore we are all MSers. At least, that’s the way I’ve always felt about it, and hopefully that might make you feel a little better as well. However, if it doesn’t then I fully support your right to protest this term and could even give you pointers as to how you might go about changing it. 😉

  • Devin Garlit moderator author
    3 years ago

    I agree DarleenM. Your comment about people having MS but MS not having them reminded me of something else I wrote: https://multiplesclerosis.net/living-with-ms/ms-ms-sort/

  • DarleenM
    3 years ago

    Hi all,
    Thanks to Lisa, Devin & deadbrainwalking for your thoughtful comments re: my objection to the term MSers.

    My ultimate take is that all of us with MS want and need a certain level of support and understanding.

    I have often read and heard folks stress that they “have” MS but MS doesn’t have them, in essence they don’t want to be defined by their disease.

    My take is that I am trying to be as positive as possible and make an impact for the better where I can. Last year we raised over 5K at the MS walk. In addition I participate in research studies and contribute data, etc.

    So, what term we use isn’t worth getting upset about, just a personal preference. As long as comments and intentions are coming from a good place I can accept that and move on to more important battles like living as full and balanced life as possible.

  • Devin Garlit moderator author
    3 years ago

    Thank you all! AS I mentioned to DarleneM, it never actually occurred to me that MSers was a bad term. I think because I’ve only seen those with MS use it. Also because I tend to this of us all as being a bit tougher than most everyday people. I guess what I mean by it, is that I say with a hint of pride. That being said, I will be more careful in my use of it!

    deadbrainwalking (and I love that username), I absolutely agree that those who are against medication are often the most vocal, which is very rough for all of the new patients who flock to social media for answers. I hope that folks will read this and remember their own journey and realize that finding the right treatment is an individual’s job. Trust me, I have my days when I need to walk away from social media too, it can be very rough out there!

    Thanks everyone for reading and commenting!

  • Lisa
    3 years ago

    I found myself nodding my head to the comment by DarleenM about the term MSers. I do see where it matters that the term wasn’t forced on us. I still kind of hate it. I am a person who happens to have MS. Yes, that is way longer than MSer. What I say about myself is that I have MS or I am a person with MS. I also happen to have Type 1 diabetes. I am a person with diabetes not a diabetic. Since I’ve been dealing with that label for many decades that could be why I so disliked the MSer designation.

  • mamak1118
    3 years ago

    The one and only time I went to an MS support group, I was shamed for being able to walk in flip flops!! Someone actually came up and said, “It must be nice…” Very snotty. I had JUST been diagnosed, and since then have only been a part of groups online. And I’m very careful not to share too much for fear I’ll be called out for being too able-bodied.

  • Devin Garlit moderator author
    3 years ago

    Wow, I am so sorry to hear that. That is certainly one of the issue I am trying to bring to light here though.

    I actually wear flip flops most of the time (though because of falls and what not my doctor wishes I didn’t). Because my hand gets numb and weak, tying shoes is an absolute nightmare for me, so I’ll even weak them year round. Since temperatures affect me so much, I also find that wearing them helps keep me a little cooler.

  • tfs
    3 years ago

    That is terrible! I also present very well and was certainly taken advantage (but not intentionally) by someone in my MS group. Boundaries.Are.Necessary. I think it is amazing if you can work flip flops. I can wear very tight fitting Birkenstock sandals. I can still drive. I can still walk. Chronic illness warps people and their perceptions. Compassion for others is the only answer.

  • goldone
    3 years ago

    Beautifully stated and true. I have had this for 40+ years and get a lot of looks from the community because I’m still stable and mostly have the invisible issues. Thank you for your honesty.

  • Devin Garlit moderator author
    3 years ago

    Thank you goldone! It always amazes me that even those of us with MS, who should know better about invisible illness, so often forget.

  • DarleenM
    3 years ago

    Devin, Thank you for reminding all of us about the importance of supporting one another. While I am not a social media attendee, I do read various blogs and MS Websites for info and occasional support.

    I would like to ask folks to reconsider the term MSers as a descriptor for those of us with MS. To me is sounds very degrading, as if we are the disease. I know it is not meant that way and it is probably just another shortcut, but to me it is fairly offensive.

    Thank you for all you do to bring awareness to people.

  • Devin Garlit moderator author
    3 years ago

    Thank you DarleneM! I’ve never thought of “MSers” as a negative but I can see your point. I always take a little pride in it because I know those of us who have MS are a bitter tougher than the average person! But again, thank you, I do see your point. Thank you for reading and sharing your thoughts!

  • Mascha
    3 years ago

    Could not have said it better!!! This attacking on some MS sites,makes me leave and searching for another one.

  • Devin Garlit moderator author
    3 years ago

    Thank you for reading and sharing your thoughts Mascha. It seems it’s a much more common issue than most people realize!

  • Poll