The Pros And Cons Of MS With Social Media
By Gina N. Campbell
A little over a year ago, I abandoned Facebook for Instagram as my, primary, social media platform. I did so for a lot of reasons, but mostly, because I wanted to interact with new people as my Facebook feed was, mostly, people I, regularly, saw in-person, or people I hadn’t seen since high school and were, probably, only following me to snoop. Instagram has allowed me to connect with other MSers as well as other people who share similar hobbies such as Rucking (walking with a weighted backpack), Blogging and CrossFit. It’s, also, become a double-edged sword, though, when it comes to my social life.
Let me preface this with the backstory that I’m an only child and, even at the age of almost 42, I have a phenomenal relationship with both my parents. In fact, they live with me and, unless I ever get married, I don’t see that changing because ours is a very tight bond that would exist even if I didn’t have MS. I’m able to help them, financially, this way and I can care for them better at an arm’s length since I don’t have siblings to help out. In turn, they can, also, keep an eye on me as I’ve, always, felt more secure living with someone, due to my MS because an, immediate, support system is essential with any chronic illness. My relationship with my parents, though, sometimes serves as an additional excuse for those around me as to why I get left out of social gatherings.
“Oh, I figured you’d be doing something with your parents,” often gets included with the “Oh, I figured you just rested on weekends” or the, ever-popular, “Oh, I figured you’d say, ‘No,’” rationale I get from people, all the time. Yes, having MS makes things unpredictable for me and, yes, there are times I might have to decline an invite, but that doesn’t mean I never want to be asked. That doesn’t mean I appreciate being, automatically, left out based on sheer assumptions. Twenty-plus years into my MS diagnosis, I should, probably, be used to it, but it still stings, even for someone in her 40s. For every day, I spend scrolling through Instagram and liking the life accomplishments and posts of others, there’s another day where I have to scroll by some outing where the vast majority of my so-called friends got together and didn’t invite me to join them. Granted, I realize some people are better friends with each other than they are with me and no one is invited to everything, but any time I’m left out, I find myself circling back to: is this because of my MS?
I circle back to that thought, but I will never chastise myself for talking about my MS. In fact, no one should. As someone with MS, or any other chronic condition, you deserve the right to talk about your illness whenever you see fit. MS isn’t a shirt you can just change out of; none of us get to ring a bell at the end of a treatment regimen or wear “survivor” shirts because we will have this disease for the rest of our lives. Don’t get me wrong, I’m not trivializing other diseases, rather I’m calling out the notion that, in my experience, people are far more understanding of a diagnosis of Cancer – something they tend to know more about – than they are with MS or other autoimmune issues. For some reason, people seem to understand how important it is to include that person with Cancer; to keep their spirits up, but they don’t, necessarily, feel that way with MS or other conditions. Likewise, I’ve encountered a lot of people who will, routinely, post things about mental health. You know, those “I’m here if you need me,” posts that have suicide prevention hotlines listed or something to the effect of “Call me before you do anything drastic.” Yet, some of those same people, have left me off invite lists or provided a very lame excuse as to why I wasn’t included in a group gathering.
This type of treatment by people concerns my mom, who often asks me what I will do when she and my dad pass away. Yes, I have extended family that live in the area, but my good friends – those friends who I’ve known for years – don’t live nearby and while they might hop on a plane for a special occasion, who can I turn to for, immediate, needs? Who will take me to medical appointments, if I can no longer drive or who will be my driver if I have to be sedated for a procedure? I often joke (to my mom) that I’ll call a rideshare, but then I stop laughing when I realize, that’s, probably, my best recourse, once my parents are gone. I mean, if someone isn’t inviting you over for drinks, or to a major life event, would that person, really, drive you to a medical appointment? Probably, not.
I don’t bring this topic up to feel sorry for myself or to make anyone else feel bad, but I do think it’s important to take stock of your, immediate, support group. Not everyone with MS has a significant other or children (I have neither, for instance), and even if you do have those things, it’s not uncommon for MS to ruin those relationships, over time. Yes, many families are very supportive, but having friends as a backup never hurts, because even your supportive family could use a break from time to time. Not to mention, in the remote case that some man decides to look past my health problems, and I get married, I, certainly, wouldn’t expect him to shoulder the, entire, medical burden. There’s “in sickness and health” but there’s, overloading someone, too, and it doesn’t matter how much someone loves you; caregivers need support systems, too.
At my age, I’ve learned to keep my social circle small and I’ve, actually, connected with far more people older than me than people my age. Don’t count older people out. You don’t, always, have to have to rely on someone your age or younger when it comes to an immediate, support circle. As for people of any age, potentially, leaving you out, I don’t have an answer for that, unfortunately, and you’ll, probably, get hurt, at times, by people you thought were your friends. The thing to keep in mind, though, is your true friends will never stop attempting to include you. Even if you have told them, “No,” time after time, real friends, always, circle back and check on you. Those are the people who really mean it when they say, “Call me if you need anything.”
Social media can open the floodgates to hurt, but for all the times I realized I had been left out, via social media, there are so many other times I’ve been able to connect with other MSers or share my story with people, in general. The way I look at it, if I can use social media to educate more people about MS, then whatever, negativity, I face in my, daily, life is worth my interactions. With any hope, maybe some of my interactions, today, might make life better for someone else, tomorrow. Every little thing helps.
I work in higher education at a public research university in Kansas City, Missouri (USA). I enjoy traveling, CrossFit, rucking (walking with a weighted backpack), Kansas City Royals baseball and spending time with my cousins’ children as well as my parents. Diagnosed at the age of 20, I have lived with MS for over 20 years. I no longer take any MS-related medication and manage all symptoms via exercise, chiropractic care, diet, and a positive outlook. I'm active on Instagram @gina.n.campbell.