Stand Up To MS Bullies

This is one of those pieces that I shouldn’t have to write. I shouldn’t have to talk about people shaming and talking down to people who suffer the same illness as they do. I shouldn’t have to talk about bullies on a website related to Multiple Sclerosis. But sadly, I feel this is a reminder that must be made. Bullying has become a massive problem in MS groups throughout social media, and it needs to stop. We need to stand up to this madness; we need to come together as a community and stand up for those that can’t.

A recent incident

I’m very much a veteran of this disease, with nearly 20 years of diagnosis and a lifetime of living with someone who suffered from MS. In all of my years, I have never seen the type of behavior and agenda pushing that I’ve seen in recent years. The final straw for me happened just the other day, when the admin of an MS group began shaming someone talking about their depression, essentially calling this person an attention seeker. Depression is something I’ve talked about a lot here, and it’s an extremely common issue among those with MS. Depression is very much a disease on it’s own: a comorbidity with MS that can spring from MS and the damage in the brain. It is not made up. Going for a walk in the woods will not solve it, neither will a diet. It’s serious and life-threatening and should never be dismissed. This is just one recent incident.

Pushing agendas

There have been numerous other occasions where I’ve been in online MS groups and people have pushed their agenda and their treatment. It’s said a lot, but doesn’t sink in for many, MS is a very individualized disease. Everyone responds differently to treatments, everyone has a different course of the disease. It’s wonderful to share your experience, but that should never turn into pushing your treatment or views on to someone else. This is something that has become almost a fad in different groups on the internet. People that have become anti-science and want to shame those that take medication. That seems so unconscionable to me, particularly when many of these people have no formal education in the matter.

A valuable but dangerous resource

Those are just a couple of examples of what happens in these groups. An outsider would think that a support group might be a safe and welcoming place, and there are some of those, but with SO many different groups out there, it’s hard to know which is which until it’s too late. Veterans of the disease can often figure things out pretty quickly, and leave, or worse, just ignore it and stay silent. However, newly diagnosed patients are in danger of having their entire lives affected by the advice of strangers.

The internet is a valuable but dangerous resource for those battling Multiple Sclerosis. We need to all be careful, not only in what advice we take, but what we give. We need to look out for the newly diagnosed and the less than tech savvy, who may be less questioning when they see something on the internet. We need to step up when we see something, but most importantly, we need to all be aware these things happen.

Sharing experiences, not advice

An aside: some of you are saying, hey, you write on the internet? Yes, I do, and I am careful not to tell people what to do, I try to simply share my experiences. I’ve turned down writing for other sites because I don’t agree with everything they push. I also know that everything I write, like everything else on this site, is looked over by professionals. Nothing posted here goes out immediately, there is an entire publishing process. These aren’t simply blogs that each writer just tosses out there alone. I feel that’s important for people to know, because that kind of thing does make a difference.

Thanks for reading!
Devin

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Comments

View Comments (8)
  • Kimber
    10 months ago

    I enjoy your articles. I’ll try harder to encourage people in their own treatment choices.

  • Dave40
    10 months ago

    Another great read Devin. Your message is so valuable and relatable tobso many. I myself am a moderator to a Facebook group. For this group of 1450 members, we have 5 moderators plus the Administrator / Creator. By having us spread throughout many time zones we are able to circumvent any comments that are not appropriate to the guidelines that have been set up AND adapted over time. We all have experienced or witnessed the behaviour you speak of and ensure our forum is kept safe for all members.

  • Devin Garlit moderator author
    10 months ago

    Thanks Dave40! There are some really great moderators/groups out there. It is a shame that so many people want to start their own groups, instead of focusing on the established good ones. Moderating is not easy. I moderate for this site, and even with a lot of moderators, training, monthly calls, and even our own private support group to bounce ideas off one another, it can be incredibly difficult. I think a lot of people starting groups don’t realize just how tough it can be at times and what they are getting themselves into.

  • Mascha
    10 months ago

    Thank you for this well advised article. I have experienced this with many sites. I have had to leave often due to this.
    I also notice a lot of bitterness by the admins. This is sad,as it’s supposed to be our save place.
    Mascha

  • Devin Garlit moderator author
    10 months ago

    Thank you Mascha! Admins and others who run the groups are often the biggest issue. I think when you are going to start something like that, you have a responsibility and you have to behave a certain way. Sadly, there is no real accountability for these people. It also seems like everyone wants to have their own group these days.

  • HNT1906
    10 months ago

    First of all, I just wanted to thank you for taking the time to write this article. I’ve read a lot of your articles and I’ve always found them to be very informative and “real.” That’s something I really appreciate when it comes to discussing this illness, so please keep it up and thank you for the good work.

    When I was in highschool I suffered from both major depressive disorder as well as panic disorder, oftentimes having two or more full blown panic attacks a day. My depression got bad to the point where I tried to commit suicide several times and altogether it was quite horrible. It was discovered over time that my problem actually lay within bi-polar disorder, which was why the medication they had been giving me had such horrible effects (SSRIs + bi-polar disorder = bad news bears).

    The reason I bring this up is because you mention rather matter of factly that diet can’t fix depression, and I’ve had a rather interesting experience relating mental health and diet. It’s important to reiterate, like you say in the article, that everyone is different and what worked for me may not work for other people. I wouldn’t presume to say that what happened to me was typical at all, but reading your article and seeing you say that diet can’t fix it…. Well, it bothers me a bit, probably not unlike the way that the people preaching diets and holistic medicine bother you.

    I’m not really one of those people, I try to let people make their own decisions for their health and if medication is what gives them relief, than I’m not one to tell them otherwise. But for me, changing my diet cured my bi-polar disorder. I don’t mean that it made the symptoms better, I mean it is 100% totally gone, done and just a memory. it’s been many years now and it has never once bothered me after I changed my diet. I know it sounds ridiculous, I didn’t think it would do anything before I tried, but in all honesty, changing my diet saved my life.

    I’m going to intentionally not list what my current diet is, as it could be potentially fatal for someone to just pick up and go all out with, but I just want you to know, that somewhere out there, diet really did cure someone’s mental illness 100%.

    It’s been very, very effective at relieving my symptoms related to MS, and while it can never un-scar the things that are scarred, perhaps it can slow down it’s progression. Before I changed my diet I was bed-ridden, I would get electric shocks throughout my entire body and I was such unbelievably bad shape I was 100% certain I was going to die. Now that I’ve changed my diet, I can walk, go out, do the things I need to do and live a (relatively) normal life.

    I guess I’m bothering to type this all just to say: It’s not impossible, and I don’t think we should say that it is. At the very least, I think everyone should experiment with different lifestyle changes to see how much better than can make themselves feel. The only thing is costs is discipline.

    Anyway, thank you again for the article and thank you again for your time.

  • Devin Garlit moderator author
    10 months ago

    Thank you HNT1906! I refer to diet in regards to MS, not depression. It may very well help people feel better and help minimize the symptoms of MS. But based on numerous independent studies that have been done over the years, it will not stop the course of the disease. Everyone should eat well, and many will be surprised just how much better they feel when they do, but it can’t be expected to repair myelin or stop new lesions from occuring. A well balanced diet with exercise should coupled with a disease modifying therapy. Again though, everyone must find their own way, but also listen to their doctors and not people on the internet.

  • Monk
    10 months ago

    Thanks for mentioning diet related to MS. Listening to some of these people who talk about diet and exercise and how it will stop your symptoms they never mention why the people with MS who always had a health diet and exercised still got debilitating symptoms.

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