Why I Choose to Only Share the Good in My Life With Chronic Illness
I’m just like you. Just like pretty much every other person with a chronic illness that we struggle and live with every single day. A person who is always struggling with one thing or another, be it a full blown flare, fatigue, side effects from the medications, pain. It’s always something. We pretty much have to choose sometimes which symptom is worse, and also accept that even on our “good” days, we are, and will always, still struggle.
I’m also just like most of you who are floating in the same boat I am. You know, the one with holes in it that we are constantly bailing water out of by hand so it doesn’t sink? Ya, that rickety old thing.
I usually chose to hide all of the bad from everyone around me – everyone from the grocery store clerk, to my closest friends. For a while I avoided serious relationships too, because I could even hide it from boyfriends as long as they stayed away from me most of the time.
I rarely leave my house without looking as nice as possible, I make an extra effort to be friendly or chipper when I feel worse than usual and have to be in public. I wear extra makeup. I smile more. I can see it. I always can. I can see the extra lines in my face, my swollen eyes, or extra puffy face from a flare or the increased steroids. I can see my distended stomach, or my swollen joints, and we all know I can feel it. But hiding it really isn’t that hard most of the time – it’s like being a magician.
It’s all about the illusion, you use certain things to distract people from the very obvious manuvers you are making right in front of their face the entire time, and voila! They think you just did something incredible, when really, it was easier than slicing butter with a hot knife.
Social media is an even easier way to let people only see one side of you. To only share pictures on your productive days, or when you look good, or of happy moments. To some extent, everyone does that on social media. Most of us don’t post about every argument with our boyfriends, or bad day at work. It’s even easier to show only the good in todays world of social media, pictures, handy little filters and 140 character tweets.
In all honesty, I never realized there was anything wrong with this. Not even your family and friends want to constantly hear how awful you feel, how many doctor appointments you’ve been too or how much you are struggling. It’s taxing on them. Most of them just don’t understand. Like most of us with chronic illness, it’s such a big part of our life we sometimes want to share, but don’t because we are terrified as being viewed as whiners, or as victims, or as people who can just never see the bright side of things.
In reality, I see the bright side of things more than most anyone I know, because if I didn’t, I would have given up long ago.
For a long time it never dawned on me that there was a problem with this. Hiding all of the bad stuff and only sharing when I had something positive to share, or had a good day and was productive. But one day I realized, all of my friends and family were terribly confused. I still couldn’t make it to family functions, I was still cancelling all my plans with friends last minute. Why was it impossible for me to make a quick lunch date, or join in knitting group for an hour, when I just shared two days ago that I spent the entire day making soap from scratch, or hiking. Why?
One good day (or more likely a couple of good hours followed by rest and feeling terrible the rest of the day) had not changed the way I still felt most of the time. I’m still sick. I still feel up and down and all around like I’m on the worst roller coaster ever.
But most of the time that’s all you are going to see. If you see a picture, I most likely will look good. If you see me in person, I’ll probably look pretty good then too, otherwise I will just avoid seeing you at all. If I share a story, it’s likely going to be because I’m happy, or did something productive. I’m sharing because I’m so damn happy I got to do something I love, and that I had a little energy, and for a few moments felt like myself again. It’s not because I’m cured, or all better. Most importantly, it’s not because I’m lying.
It’s not because I’m lying about how ill I am, or trying to hide things from anyone. It’s because I want to share that the girl inside this tiny boat with all the holes filling rapidly with water might be struggling, and scared, and often close to sinking – but she’s also still alive…and she’s also still scooping water out with her bare hands, and trying desperately to keep afloat.
I won’t stop sharing the majority of good things with people. But it’s important for those who are close to us to know that we are struggling, and that their love, their support (be it be loud, or silent) is important. They need to know that we try to focus on only sharing the good so much not just for their sakes, but also mostly for ours.
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