I’ve questioned posting this blog post because basically, it is all about me ranting and venting my frustrations with some of the things I see on social media. I’m not sure if this will be helpful to anyone but myself, and I’m sure not everyone will be happy, especially if you’re a big fan and user of social media. This is my perspective and perhaps it has been influenced by 14 years of living with MS.
I’ve been getting frustrated lately with some of the MS communities on social media. Perhaps it is the groups that I am following or perhaps it’s the fact that I don’t think I’ve ever put this much time, thought, or energy into MS, and I’m questioning whether it is good for my overall health and sanity. MS was just a thing that I dealt with but I always tried to keep it in the background. Trying to get LiveWiseMS.org off the ground has taken more out of me than I think I realized it ever would. I didn’t realize how hard it would be to see people struggling, to see the continuance of misinformation, and the repeated questions that get asked over and over again. To me, social media has its positive aspects in regards to offering a mechanism of support but I also see social media as a potentially dangerous thing.
Take comments with a grain of salt
I see a lot of advice and false information being perpetuated via social media and it frustrates me to no end. MS is such a variable disease and affects us all so differently. I can’t stress enough the fact that what may work for one person may not work for someone else. People need to find their own way with MS and to discover what strategies work best for them in living their lives with MS. By all means, consider the things people are saying on social media, use it to offer and receive support, but take it all with a grain of salt.
We see healthcare professionals for a reason
The thing that frightens and frustrates me the most is when some MSers preach and promote treatments, vitamins, alternative therapies, etc. that have miraculously worked for them with their MS. That’s great! I’m happy that they found something that works for them but I find it dangerous to encourage others to try the same thing, or to say that they should go off of their disease-modifying therapy (DMT), or to not go on DMT because “they’re poison,” or that the pharmaceutical companies are all out to get us. I’ve seen these types of comments, and I shudder to think that anyone might actually be listening to these people who don’t have any kind of medical background. Again, MS is such a variable disease and affects people so differently. What works for one person may not work for another. I can’t stress that fact enough and feel like I need to scream it from the rooftops.
I’ve also seen people post their MRI results on social media and ask for the group’s interpretation. Yikes! I’m sorry but that’s why we see healthcare professionals. These people have actually gone to school for years and received degrees in reading and interpreting these test results. Open the dialogue and ask your healthcare professional the questions you need answering. If they are not answering your questions, find a practitioner who will answer them. These professionals are out there and are more than willing to work with you. LiveWiseMS.org has even offered an “Ask an Expert” where you can submit questions to be answered by the professionals from the International Organization of MS Nurses (IOMSN).
Pharmaceutical companies are not the devil
Maybe I’m naive. Maybe I’m too trusting. Maybe I believe that Elvis is indeed dead. I just don’t understand the distrust in pharmaceutical companies. At the Consortium of Multiple Sclerosis Centers Annual Meeting in May, I met some of the people behind these pharmaceutical companies. One person, in particular, shared her first-hand experience in caring for people with multiple sclerosis before the existence of disease-modifying therapies. She talked about the need to continuously roll these people over so that they wouldn’t develop bed sores, and I stood in front of that person and thanked her with tears in my eyes. Without the work of these people, and these companies and researchers, I don’t think that I would be living as fulfilling of a life.
In fact, a lot of pharmaceutical companies offer resources to aid and benefit patients. To use LiveWiseMS.org as an example, we received an unrestricted educational grant from a pharmaceutical company, meaning that they donated to our site but in no way do they have say over the information on the site. LiveWiseMS.org is not being used as a vessel to promote their products but solely as a means to further educate patients.
Practice some common sense
I’m also baffled at some of the questions that I see repeated like, “Is smoking bad for me if I have MS?” Umm…not sure where that person has been for the past 50 years or so but yes, yes smoking cigarettes is bad for your health whether you have MS or not. And every ailment, large or small, is not necessarily related to MS. I know it is hard when you’re dealing with a chronic illness and it is easy to get hyper-focused on MS, but listen to your body and soon you will be able to decipher between what is MS and what is something else. There are other things going on in your body and as always, talk to your healthcare provider about these things; the professionals are probably your best source of information.
Stay educated and always consider the source!
I request that all MSers always consider where you’re getting your information, and always think before commenting or sharing information. There is a lot of good, trusted information and resources to be found on the internet but there is also a lot of old, outdated information that keeps getting recirculated. You also don’t always know who you are talking to on social media. Anyone can claim to be an expert these days and you just want to be cautious.
So what can I do?
I’m trying to focus on what I can do and to channel my recent frustrations on the intent of LiveWiseMS, and that's to disseminate reliable, trusted information to the MS community. LiveWiseMS.org seeks to empower people affected by MS to live the best possible lives that they can. Knowledge is power, especially when it is trusted, reliable knowledge.
And lastly, perhaps I need to listen to my own advice and take social media with that proverbial grain of salt. I feel better now that vented some of my frustrations. If you made it this far, thanks for "listening"! I really needed to unload.