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.
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!