What My Photos on Social Media Don't Tell You About My Health

Photos on social media can be very misleading, especially if you’re living with an invisible chronic illness. When posting anything, there’s a fear of coming off too sad, too negative, or maybe even self-absorbed. It’s so much easier to hide illness like a secret, rather than make yourself vulnerable. The irony in hiding our humanity like a secret from each other, is that it’s not really a secret. We are all safeguarding the same humanness with a different narrative attached. Mine just happens to be myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS).

It’s invisible, it fluctuates, and when I’m sick — you don’t see me because I’m sleeping somewhere. Because my chronic illness is invisible, you can’t tell by looking at photos that I’m sick. Photos again fall short of conveying these more challenging times (if I do happen to take one when I’m recovering), because you can’t see how symptoms fluctuate in them.

I have compiled photos from my social media and told the real stories behind them, as I remember them, in chronological order. These are the stories I left out, when I originally posted them. By telling these stories I hope invisible chronic illness becomes less of something we feel we need to hide.

1. I went on an interior camping trip with my cousin. In retrospect, that was a very bad idea. We ended up having to stay an extra couple nights on an island because I was too sick to paddle home. I did manage to paint a sunset one evening, when I wasn’t busy sleeping in the tent or canoe.

2. I had to take a semester off school because of a severe flare-up. I spent most of the summer sleeping in a bed, or lying in a hammock. It sounds like a dream come true, but its not the case when you feel like you have a perpetual flu and can’t move your body.

3. That same summer, three of my good friends planned their weddings within weeks of one another. In order to make it through the reception at this particular one, I had to pump my body full of B vitamins and caffeine. We ended up leaving early. I had wished more than anything to be dancing with my friend on her big day.

4. I was having a severe flare-up over the holidays and into the new year. I wasn’t well enough to celebrate New Year’s Day with friends, which was now a common occurrence that left me feeling pretty bummed out. I instead put a headband on my cat and celebrated from the couch. (I would be lying if I pretended the headband wasn’t an annual tradition now.)

5. I spent most of this day on the couch. The weather was so nice outside, so we decided to drive to nearby falls. A hike was out of the question, but putting my feet in the water wasn’t.

6. My partner and I had booked a camping trip six months in advance. It was our only vacation that year, and it meant a lot to the both of us. I knew a day kayak trip would be pushing way beyond my energy limits, but I did it anyway (you are probably noticing a trend). I had to take a week off school to recover from our “vacation.” I realistically needed a month.

7. The lookout at the top of this hike was epic. What was not epic was how much my body was trembling, and how dizzy and exhausted I felt getting up there. I knew my ME/CFS was getting worse and it was scaring me a lot at that time. Two months after this photo was taken, I had a severe crash and ended up having to leave school. I have not been able to return since.

8. That summer I spent the majority of it supine. I was feeling incredibly upset about the decline of my health, and it not being responsive to anything that had worked previously. I regularly brought a book, blanket, and pillow to the nearby park to help feel a part of the world. My partner joined me one day under a tree.

9. I rested up so I would be able to attend a festival in the city that day. It felt so nice to be out and around friends. It also felt really good to dress up. It took me a week to recover from this outing. It’s always hard to predict the “payback” from expending energy, and expecting a crash and recovery period for anything and everything seemed to be the norm now.

10. We attended a concert, and there was seating! A huge relief. It meant I wouldn’t be feeling progressively worse, and trying to find a wall to lean up against.

Looking back at these photos, I can always remember how I felt that day and how I felt afterwards. Now you know too. I invite you to share the stories photos can’t tell, if you too live with an invisible chronic illness. Let’s make our experiences visible, one story at a time.

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