What You Don’t See When You Look At Me

Social media doesn’t tell the whole story

Photo by Crazy Cake on Unsplash

Last week, I received a message from someone on Instagram that said, “you claim to be sick but it sure doesn’t look like it from the pictures you post.”

At first, I let the message upset me. They have no idea what I’m battling everyday, I thought. The severe head pain, the dizziness, the cognitive dysfunction, the emotional toll it all takes—none of that can be seen in a picture on social media.

I decided not to answer the person directly, but to instead make a post about it to hopefully use it as an opportunity for some good. Because it’s something those of us in the chronic illness community deal with a lot—judgement over just how sick we really are.

So I posted this picture of me that was taken on our recent trip to Virginia where I’m smiling but you can’t see the myriad of debilitating symptoms that I was experiencing.

The post got a lot of engagement. Plenty of people were outraged that someone would actually think it was okay to send me a message like that. But even more of the comments were from other chronically ill folks who have experienced similar judgement in their lives. It’s far too common.

Not my first rodeo

That message was not the first time I’ve been judged for not “looking sick enough.” It took me back to my days working as a case manager, when I was called into my boss’s office one afternoon.

Towards my last year working at my job, I had to use FMLA to protect myself. I’d undergone three back surgeries in the two years before that and was still struggling with debilitating headaches from an undiagnosed cerebrospinal fluid leak. There were more days than I would’ve liked that I had to call in sick because of my symptoms and on those days, I would tell them I was using FMLA.

One afternoon, my boss sat me down. She said to me, “I want you to be careful what you post on Facebook. I overheard my boss and others in the office talking about how it really doesn’t look like you have health issues from some of the pictures you post.”

It was just after Christmas and my husband and I had gone to a little cabin in the woods, as we did every year, and I posted some pictures of us in the snow, smiling. I guess my coworkers didn’t think someone claiming to have the health problems I did could possibly pose for a picture in the snow?

What they didn’t see was how the majority of that trip was spent inside the cabin, in bed, because of my symptoms. I adore the snow and was determined to get a pretty picture in it, even though I paid for it later and was certainly not skiing or snowboarding or anything physical like that.

After my boss told me that, I cried the entire way home from work that night. And I never again felt comfortable at my job. I wished so desperately that people could spend even one hour in my body so they could see how much pain I constantly pushed myself through just to keep working. I was trying so hard. But no one could see that.

Social media is not reality

The thing is, social media is a highlight reel, even for those of us who are chronically ill. You’re seeing our best moments. Not the ones where we’re stuck in bed crying in pain.

And even with those pictures of us on our “good” days, you’re not seeing our full human experience just by looking at a picture. Like in the picture I posted on Instagram, you see me smiling because I was in a place that made me happy.

But you couldn’t see just how much I was struggling in that picture. My head hurt really bad (as it always does these days), I was dizzy, and had a whole host of other symptoms. You can’t see that. But that doesn’t mean it’s not my reality.

You also can’t see how after that outing, I was done for the day. When we got back to our Airbnb, I got straight into bed and stayed there for hours.

When you’re chronically ill and have symptoms like this on a daily basis, you learn to live with them and smile through the pain. I refuse to let my symptoms keep me from living my life.

That’s why we went on a little trip even though I’m suffering from a CSF leak and increased pain right now. I needed to get away from the four walls of my bedroom for a little while. But just because I went on a trip doesn’t mean I’m not sick.

Sometimes it feels like you can’t win with chronic illness. I post pictures of myself living life and smiling and I get a message that I don’t really look sick. But then if we post pictures of our bad days, some people assume we’re just looking for pity or attention.

I guess I just want people to know that there’s so much more to a person than what you can see. Especially when dealing with chronic illness. Remember that when you doubt just how sick a person really is.

I can promise you, none of us chose this life of chronic illness. We want nothing more than to be well. So I humbly ask that we all just try to be a little more kind. I think the world could use more of that right now.