What Your Chronically Ill Friends May See When You Post on Social Media

In the last few years, people have become totally consumed with their posting of pictures, memes, long rants of one kind or another, but most especially with their exercise stats. Social media platforms have rapidly become our most common method of connecting with the outside world; it is the way most people share what is going on in their lives, or at least the parts they want people to see (and envy). The interesting thing about social media is that we all “see” each other’s posts differently and people with chronic diseases definitely see things through a totally different set of lenses.

What was once designed to reconnect people with their long lost friends has become a way of sharing much of what goes on in our daily lives, in real time. Generally, it is a way of sharing our happiness and accomplishments. I know someone who posted a photo of their dinner stating how unbelievably happy they were to celebrate their fifth anniversary, and within days, that post was pulled down, the marriage was dissolving and things had “really been terrible!” Social media shows only the shiny apples, the perfect ones we put on display – not the worm-eaten ones that get left on the ground that no one wants to see. This is what I personally refer to as “the sanitization of peoples lives.” We only show the pretty. But what we don’t realize, even in posting only the pretty, is that when you posted the photo of your walking or running app posted your distance and time after a “long run on a beautiful day…” I, and possibly other people, saw something very different.

We all know people who religiously check their posts to see how many comments, thumbs-up/emoji’s or “likes” they have accrued in a short period of time, as though that number is directly tied to their self-worth and identity. The integration of social media into our daily lives has impacted our sense of self, in a very big way. So, what do I see when scroll through my homepage and see your marathon training postings? What I see are people doing amazing things, most I could only ever dream of doing, and this is can be very difficult for me to see (although, understand, my frustration doesn’t lessen my sense of happiness for you). It definitely impacts my own sense of self. When you post that picture of your most recent 10K with that shiny medal hanging from your neck, I get jealous. I see your amazing accomplishments for what they are, and I am really happy for you, but it magnifies that I’ll never be able to do even half of the things you do. It also reminds me that I can’t post anything about my day that will elicit that same type of reaction, since taking a shower, or doing laundry or food shopping aren’t seen as major accomplishments by most people – but for me, it was my marathon. But, I’ll never get a medal for doing what most people consider simple, menial tasks!

I read about your amazing job promotion and the travel that it demands, and again, I am really happy for you – but it reminds me that I had to retire early because my disease left my body so wracked that I can no longer make it though one day of work without terrible exhaustion, joint pain and nausea. Let’s be real, no one wants to know about all of my blood tests, doctor’s appointments and assorted medical issues, and honestly, most days I don’t want to think about them either. But then I find I have little to say, and that also becomes difficult. It feels easy to disappear in your own social media life if you can’t post about your daily life, since there is only so much other stuff you can post.

A few months ago I was considering purchasing one of those wristband tracker devices to keep track of my steps and thought it might be motivating for me to be able to try to top my numbers from day-to-day. Everyone is wearing them and I wanted to be like the cool kids. I discussed it with my wife who hesitated briefly and then agreed that it would be OK, if I wanted it. But, she was honest that she was afraid that I’d be more upset by the inconsistency of my body and she asked very lovingly, “Will it bother you if you can’t get to a certain goal or meet the number of steps you have done before? Wouldn’t this be harder for you than just taking it one day at a time and doing your best for that day?” And with that question, she had an amazing insight into the world of someone with a long-standing chronic disease. We live in a more day-to-day manner than most people. We know that today might have been very productive, but tomorrow might be totally written-off due to sudden onset of symptoms that 12 hours before were not even in the picture.

So, when you post that you ran your five miles in 47 minutes and you wonder why I, at best hit the “like” button and don’t comment every time, it isn’t because I am not happy for you. I am, but that every time I see those posts, I have to again face my inability to meet that type of challenge. I am always facing that same brick wall, the same wall you easily climb over.

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