this is what chronic pain looks like: #spoonieselfie installation 3

The #spoonieselfie challenge continues. Please continue to boldly take your gorgeous and/or not-so-flattering selfies in moments of pain and share via social media. To submit your spoonie selfie to Brain Storm, include a description of your condition(s), your symptoms, and any coping strategies you might have used in the moment the picture was taken and send to

We are not alone on our Saturday nights in covered in ice packs. We are not alone in being told “you look great!” when we feel like a bag of poop. We are not alone in having a wardrobe that is 80% pyjama wear. We are not alone.




ostritch 5 raw

I have spent the last two weeks having to spend at least part of the day in bed. I have POTS and Myasthenia Gravis. I grabbed my cane and hobbled out to my yard for a few minutes to experience some sunshine and leave my bed. I tried to put a smile on despite how terrible I felt.

Stephanie Shea


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I took this picture at 1:30 AM because Insomnia doesn’t care about the clock. I was able to wash my hair, thanks to pain medication, for the first time in over a week. What you can’t tell by the photo is that my head is actually locked to the side. The muscle tension from my neurological condition, Dystonia, kept it locked there. The tight muscles left me with a headache that lasted for over a month–and I was also in the middle of a tic storm from my Tourette’s Syndrome when I snapped the picture.

I think this picture illustrates that someone might look ok for a few minutes, but you can never know the pain behind the smile or know how much more work went into clean hair than before I was sick. So, you can never judge a person by a quick look because you don’t see them when they’re alone and at home–crying in pain.

Sarah – Seriously, Sarah?

ostritch 5 raw-2
I took this at 2.30am. As happens quite often, I’d been woken up by an intense pain in my left temple that felt like someone was stabbing it repeatedly with a knife while turning a screwdriver on the same spot at the same time. Then bright flashing lights erupted all over the room and the pain spread across my forehead. Not a nice way to spend the night, but at least it gave an opportunity to finally attempt the spoonie selfie challenge.
When crying, thumping the pillow and grunting like a pig didn’t work I tried to use mindfulness to breathe in a focused way, to have compassion on my pain, to notice the parts of my body that weren’t hurting, to separate out the physical pain from the emotional suffering (like trying to convince myself I’m not about to die!) and to remember that all pain is temporary and will always pass, however intense it might feel at the time. It wasn’t entirely successful but I made it through to morning in one piece, and sometimes that feels like more of an achievement than climbing Everest.
Naomi is from Lancashire, England and writes about living with chronic migraine at


  1. I’ve started calling my clothing that comes from the “active wear” department my “inactive wear!”

  2. It’s the pits when the pain is in your face, can’t even wear my glasses, the bridge part of my nose and my nose are throbbing. Your 2:30 am pic looks alot like me.

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