Everyone has (or at least most people have) a Facebook/Social Media Life. It reflects what you want the world to see, usually showing your ‘best bits’ or things that you want a reaction to. It’s not accurate of every day life remotely.
For some reason, lots of people seem to think that this online life should change or no longer exist when you have a chronic illness. That if you’re ‘able’ to go out and have fun that you’re somehow lying about your illness because you’re not putting up photos of you in bed sick. People who have chronic illnesses choose what they put up on Facebook, just like everyone else does, and, just like everyone else, it’s the ‘best bits’. Why wouldn’t it be? What we don’t put up is what happens ‘behind the scenes’, and I’ll use a few examples to illustrate my point:
The photos of our wedding look lovely. We look happy, everything looks perfect. Credit to our photographer, he didn’t get any shots of anything medical. What you can’t see is that a friend nursed me through the whole day, and I had to take inhalers all the way through the ceremony when my husband was saying his vows- the registrar had been told what to expect and it was built in to the ceremony. Or the fact that 2 weeks before, my medication made me put on so much weight I had to have my dress let out 4 inches despite the fact that it fitted perfectly for the 10 months leading up to it. And that I couldn’t stand up for more than a few seconds, but sitting down made it hard to breathe due to the structure of the dress so I had to take it off and sit on the floor of the disabled toilet with my bridesmaid for part of the reception. Or that I was in so much pain friends had to botch my dress at the back so that I could manage the rest of the evening. One of my friends had been tasked with carrying sugary snacks to make sure I didn’t pass out. We knew where the nearest hospital was just in case. The pashmina I had wasn’t to accessorise, but in case there was something triggering my asthma and I needed to cover my mouth and nose. I couldn’t drink alcohol, not even for the champagne toasts but I pretended to for photos. I don’t remember much of the day because I felt so terrible- how upsetting is that, not to remember your own wedding day? But at least the photos looked perfect!
My husband jokingly started doing a series of photos when we were away, ones of us looking happy and smiley on our honeymoon, which went on Facebook, and the ones he took before he woke me up to take the photo with me. I spent the 4 days we were away being sick, running to the toilet, and falling asleep anywhere I possibly could. So we have photos of me asleep on the underground, in the Sagrada Familia, in the Park Guell, at the bay, on various benches in La Rambla… you get the idea. Then he woke me up to take a photo with me. We didn’t do a lot while away, we spent a lot of time with me asleep in the hotel with my husband watching Spanish TV. Now I know I was lucky not to die on that holiday (true story), but the photos look like we had a lovely time.
I choose what I put on Facebook. I don’t check-in every time I go to hospital, because I don’t need a reaction from other people. I don’t write long statuses about the staff who help me because I either email their bosses or write it to their social media page directly. The people who tend to do those things usually do it because they want a reaction about the fact that they’ve been in hospital, because they’re not chronically ill and it’s not ‘normal’ for them. Just because I don’t write the posts, check-in or take selfies of me in a hospital gown, doesn’t mean that it didn’t happen. You don’t see the planning that happens when going out for the day, or all the other days I have to miss out on. It takes a lot of skill to fake being well, a lot more than ‘looking sick’.
So if you see photos on social media of someone who is chronically ill having fun, don’t use it as a way to take them down or belittle them. Stop being so judgemental, they’re showing you the ‘best bits’ of their lives just like you show us yours.
Banner Photo: Google image