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How Much Do You Share About SMA On Social Media?
Happy Friday everyone!
So I wanted to ask you all about how you use social media. I’m friends with a lot of SMA people on Facebook, and it’s interesting to see the levels in which they share things about living with SMA. For some, it’s all they talk about. A lot of parents especially post constantly about their kids who have SMA. Then there are others who never talk about SMA on social media.
This disparity is really interesting to me. Obviously with a platform like this, it’s designed for people in the SMA community to be fully transparent about our lives, and to support each other. With Facebook and other social media sites, I think it’s good to have a balance. I post pretty openly about living with SMA/being an adult with a disability, but I post other things as well. I post movie reviews, pics with friends and family, and things like that.
Also, this is just a personal thing, but I just don’t post Facebook statuses about doctor appointments, Spinraza injections, etc. I know others who do, and that’s fine. My Mom posts more about this stuff than I do, but I just don’t feel compelled to post regular updates about my health on my regular social media pages. I write about those things here of course, but for me it’s just easier to talk about pulmonology and Spinraza with other SMA people than it is to document my health on Facebook.
What about you all? How much do you share about living with SMA on your personal social media pages? Is there anything you definitely don’t talk about on these platforms?
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8 Replies
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I use my Facebook primarily to share my faith and to talk about what’s going on at Turnstone where I am a volunteer and client. As far as SMA, my Facebook friends are fully aware that I have it, but I don’t frequently post about it specifically. Though I am more than willing to discuss it or answer questions through Facebook.
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Same. I’ll post my articles and such, but like I said I don’t post regular updates about my health and what not. Like you, I’m happy to answer any questions people have, but I don’t always initiate the conversation.
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I find Facebook useful for updating people on important events in my life. This sometimes includes SMA related stuff. When I was pursuing Spinraza, I’d update people on Facebook. It’s more convenient than texting like 50 people individually. If anything, I avoid talking politics, but there’s no SMA stuff I avoid.
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I definitely know what you mean there. For big stuff I post updates. I wrote about the time leading up to my first Spinraza injection, but I haven’t posted regularly about each one since then. Then for PT and stuff, I’ll write about it in my columns, but I don’t post regularly on Facebook about it.
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Like Ryan, I mainly stay away from politics. I just share what’s relevant to my life that people would be interested in trying to keep it positive. My service dog seems to be a popular subject, so I focus a lot on him. Honestly if you asked some of my friends and even extended family they might not even be able to tell you I have SMA specifically. Not that I haven’t mentioned it, it’s just not focused on.
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Sure, I totally understand. And yeah, I try to steer away from politics as well.
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Like most of y’all, I post about all sorts of different things: my faith, my disability, my family, my pet peeves! The only times I really mention anything about my health is if I’ve had a problem with getting a test done or getting a diagnosis. I feel like these are things most everyone can relate to, and you don’t have to be disabled to have gone thru them. As Deann said, the majority of my family and friends would not be able to name SMA as my particular diagnosis. In fact, a lot of friends would probably think I’m a quadriplegic. I’ve found that this forum is good for getting feedback on issues that particularly relate to SMA/disability struggles.
Oh… and I definitely stay away from politics!
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I don’t recall ever posting anything on Facebook about SMA. I have on occasion shared articles about disability rights that I found interesting. Most of my posts are photos of my life that I share with my family and friends back east, recipes that I like, and jokes and observations that I write.
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