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!