What’s the Good & The Bad of Social Media for Spoonies?

I, like many of you, spend a lot of time on social media. Though the ironic thing is that I’m not a huge fan of social media. Sure, it’s easy to mindlessly scroll, but I wouldn’t call it having fun. That being said, if you follow any of my many social media accounts, you’ll know that I often use it to (a) promote my content, and (b) share relevant health/mental health information (that is strongly evidence-based) to help fellow chronic illness warriors. But this post isn’t about me, it’s about the collective we. Because when it comes down to it, there are positives and negatives of using social media, especially when it comes to health information sharing and mental health outcomes. I took a look at the research from 2013-now (most of it more recent) to see what the thoughts were, and here’s a summary of what I found.

We live in an age where almost all of us have multiple social media accounts.

Let’s start with the good. A lot of the research found that patient’s, including Spoonies, are using social media for positive purposes. We use it often as a method of social interaction so that we can interact with other Spoonies. Social connection is important, and it can be helpful to talk to other people who are going through similar things as ourselves. Some studies have even shown that psychosocial health improves for people who use social media – again, likely because of the social connection we are using it for. One study mentioned that we all universally trust professional health sites (I mean, come on, who doesn’t trust the Mayo Clinic site for example) to gather information. They did note a cultural difference, in that people from holistic cultures tend to trust blogs, online support groups, and social networking sites more often. I’m not sure that this is a good or a bad thing, I think it depends on your worldview, so I’m going to leave it in the good section for now. Finally, when it comes to mental health, social media has the potential, depending on how it is used, to promote mental health. My TikTok channel is an example of me trying to help promote mental health coping skills. And while some studies (which I’ll talk about below) mentioned that social media may not be good for anxiety and depression, they also found no within-person differences, meaning there is only a correlation between social media use and these mental health outcomes, not causation (more on that in a moment).

A lot more healthcare professionals are trying to use social media for health promotion.

Now, what about the bad? The biggest problem with social media is that information is not always of good quality or reliable, especially if it’s coming from non-healthcare professionals. It’s hard to determine what is good information and what isn’t. I’ve mentioned that I always look at the research before writing a blog post or suggesting something online. And when I say I do the research, I mean I read scholarly journal articles, which are written in the most dry manner, but contain important information. For this post, I read 6 articles, which no, isn’t a lot, but definitely a start. However, most people online don’t do this, and this is where caution should come in. Another issue is self-diagnosis, which I see all the time online. The problem is that users (whether it’s us as patients or people administering self-diagnosis apps, etc) are not trained medical professionals and, therefore, lack the competency to make a diagnosis. I know we all want a proper diagnosis, and that doctors don’t always listen, but they do have the training needed to diagnose. There is also very little evidence that social media actually improve any health outcomes. You could be a regular reader of this blog, and apply none of the information to your life (which I do always caution that you should consult with your own healthcare team anyway) and then see no improvements… so I understand why the research says this. Furthermore, if we are using inaccurate information (especially if it contains biases) then we could see a negative impact on our health. Finally, when we talk about anxiety and depression, as mentioned early, there have been studies that show that time spent on social media is moderately related to levels of anxiety and depression – however, because we don’t know cause and effect this could also be that more depressed and anxious people spend more time on social media, but it’s worth noting anyway. A major problem among adolescents (and let’s face it, most adults) is that though social media is a quick and easy way to access information about health/mental health, we rarely scrutinize the quality of information (as mentioned earlier). Okay, I know I said finally already but one more thing, sharing information on social media can lead to a lack of privacy (I literally see people share screenshots of their test results on Facebook groups all the time). So, just remember that when you’re sharing information – it’s now accessible to everyone.

I personally find Facebook to be the most exhausting, but I know others find it really helpful.

I know it seems like I wrote a lot more about the bad then the good, but that’s not a bad thing… the bad is the cautionary part but the part we can use to our advantage. For example, if we start to scrutinize information for quality, if we try to not self-diagnose, if we apply accurate information only, and we’re careful about what we share, suddenly we don’t have really any “bad” parts of using social media for health/mental health purposes. Check out next week’s podcast episode with Amy Sinha about making connections online where we talk more about the good and the bad, as well as different types of connections we can make (available on Monday)! Keep on making the most of it!

A lot of great information is shared on Twitter – depending on who you follow of course.

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