Project #SpoonieSelfie by BrainStorm

From the wonderful blog Brain Storm, I bring to you the #SpoonieSelfie Challenge

In her words:

Here’s the challenge spoonies:

Help me set the record straight by submitting your most scrunched-up, messed up, real honest-to-God pain face to annaeidt@gmail.com before February 28th, and I will publish a blog post that exhibits of collection of pain faces so real that people will laugh at us (because who are we kidding- these faces are ridiculous), but also see that our pain is often visible, just not usually to the world at large.

Please include your name, illness(es), and where you are from. [NEW: Also, if you like, include a little write up describing the pain you felt in that moment, and perhaps what coping strategies you were able to use.]

If you are feeling really brave, post your selfie on twitter @brainstorm83 or instagram @lousongmade with the tag #spoonieselfie.

Here’s a link to the actual post by BrainStorm: http://migrainebrainstorm.com/2015/01/17/the-spoonieselfie-challenge-2/


 

UPDATE: #SpoonieSelfie Challenge has been memorialized with two installments posted by Brain Storm so far! here they are:

Part 1. http://migrainebrainstorm.com/2015/02/14/this-is-what-invisible-illness-looks-like-spoonieselfie-installation-1/

Part 2. http://migrainebrainstorm.com/2015/02/21/this-is-what-invisible-illness-looks-like-spoonieselfie-installation-2/

To keep up with what she doing as she posts it, head to: http://migrainebrainstorm.com/tag/spoonie-selfie/


Here’s my contribution, from this last week when I fell on my face in the middle of the night! Fun times!2015-01-27 07.26.20

Check out that goofy concussion face! Mere minutes after smashing my face on some furniture because my hip gave out due to EDS/Hypermobility, and I had already not slept for 64 hours at this point, due to some horrendous #Painsomnia. Funny thing though, this very obvious injury hurts SO MUCH LESS than my smallest of fibromyalgia, costochondritis, torn discs and subluxated vertebrae, hypermobility, or chronic fatigue pains.
Even the moment of waking up on the floor with a bunch of blood in my hands was underwhelming, I’m so used to pain that I was just kind of pissed that my face was messed up looking and bleeding and would now obviously take some time to heal, but I never once thought “wow, my nose really hurts” because I still am in agony so much worse everywhere else!
Yet, for some annoying reason, I got so much sympathy for my raccoon eyes and purple, lumpy, swollen nose. I get very little for my invisible, disabling illnesses, even though they are the reason I have two black eyes and an almost-broken nose in the first place!

The night of the fall, around 4am, once I stopped the excessive bleeding with several kitchen towels.
2015-01-27 04.17.32
Currently, a much worse pain is making it difficult to even take a full breath. Forget coughing or sneezing, those actually do make me lose vision and control over my body (I hate the word “faint”). The costochondritis I have right now is so much worse than falling on my nose like a sack of dropped potatoes, and has been going on for over a week now.
The embarrassment was by far the worst part of the whole face-meets-furniture ordeal.
The silver lining is that it did provide me an opportunity to dialogue with people about my illnesses without seeming selfish or dramatic (because the rest of the time, if they can’t see it, I must be making it up). For my friends and family, I keep trying to connect the dots between my invisible illness and this visible sign of my body’s deterioration.

One day later it was a little more obvious in the raccoon eyes, but completely painless unless I poked the injury directly.2015-01-30 11.07.29

When I saw BrainStorm’s post about #SpoonieSelfie, I got a little more ambitious. Now I want my photos to help as many people as possible to understand that invisible disabilities can sometimes cause injuries that are quite obvious, but the rest of the time, even when my face doesn’t show it, I am still in pain, I am still dealing with illness every minute of every day. Many of us are so good at putting a smile on! It comes from years of practice, and the knowledge that negativity is not so fun to be around. The problem is, we are still hurting, and we are still fighting our conditions no matter how great we look on the outside. Saying “You look better, you must be feeling better” is like saying “I hate the font, so even though the story was great and the writing was compelling, it was a terrible book.” No?
 –
See, most of us are pretty skilled at smiling no matter what is going on. I get a lot of “I wouldn’t have known unless you told me” and I am always a little shocked, because it seems like the pain should always be obvious. Later, I’m relieved, because it means I still have an identity beyond chronic pain and illness and one set-back after another. People still see me as something other than my diseases and that is pretty freaking awesome, and instills a lot of hope; things can still return to some form of functional normalcy, some day, some how, some way.
smile anyway!
That is why Brain Storm’s idea for Spoonie Selfies is so awesome! Send your copies of your worst, most honest pain faces (think no make up, bed hair, bags under your eyes, crocodile tears, sweatpants, greasy skin, facial expressions and poses that happen when you’re at your worst, medical devices and piles of pills, etc,). Let the world know that invisible illness is very, very real! Submit your own photo/photos and support project #SpoonieSelfie by posting your pictures on social media with the above hashtag, and a linkback to the original blogpost: http://migrainebrainstorm.com/2015/01/17/the-spoonieselfie-challenge-2/. When you are done, send your pictures to BrainStorm’s email (annaeidt@gmail.com) so she post them at the end of the month. Please support and share her campaign throughout February, as she is an inspirational blogger running a very wonderful awareness campaign.

I want to thank Brain Storm for her energy and time and for the great idea of hosting this wonderful challenge, I couldn’t think of a better way to use these pictures. It definitely contributed to me being less embarrassed about the stupidity of painsomnia, collapsing joints, a concussion and just generally feeling like a failure for falling on my face in the middle of the night. Now it has a purpose! And I totally love her for that! Plus she posted this challenge on my birthday, so how could I not participate?!

If you haven’t already, now would be the time to go check out her beautiful blog, Brain Storm.
It is full of honesty, humor, and insight into the world of a chronic migraineur. Her writing is brilliant!
 –
Here are three of my favorite posts besides her #SpoonieSelfie call to arms:
 –
What are you guys waiting for?! Let’s share, contribute, have some fun with this, while educating people about your condition at the same time! Please participate in this challenge if you can, or share even if you cannot! The #SpoonieSelfie challenge ends the last day of February, so please have your photos posted on social media, tagged with #SpoonieSelfie and #BrainStorm, and sent to her email: annaeidt@gmail.com by February 28th at the very latest to be included in this awesome awareness campaign!
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About Jessi Finds Out Fibro

Hi, and thank you for finding your way to my corner of the web! I'm on a journey to empower myself and hopefully others through shared courage and compassion. I write Finding Out Fibro, a chronic illness and chronic pain awareness blog that is not just about fibromyalgia, as well as a new project making jewelry under the Etsy name Hopeful Spoon. Please check out the shop and share if you can! Thank you for your support! My other hobbies include defeating ableism anywhere I find it, upcycling old junk into funky awesomeness, raising my voice to erase stigma against invisible illness and mental illness, baking, collecting vintage kitchen ware, sharing body-positive messages, playing around in photoshop, abstract painting (especially in neons and metallics!), advocating for those living with chronic illnesses and mental health challenges, seeking safety and upholding visibility for LGBTQIA individuals living with physical and mental disabilities, researching and testing plant-based remedies for chronic pain, and spending all my spare spoons in my veggie garden. This is my opportunity to do more than just survive with chronic illness. This is me learning how to live well, even though there is no cure for the war my body is waging on me.

3 responses to “Project #SpoonieSelfie by BrainStorm”

  1. abodyofhope says :

    What a great idea for a campaign.
    You hit the nail on the head with your analogy comparing the font to the writing of a book. It can feel argumentative at times the way people point out that you look well when you feel like absolute hell.
    I hope you are finally starting to heal up. I know these scars will heal, but for a short time, the repercussions of your illness were visible on the outside- and that’s why it’s so amazing you are sharing it! ❤

    Liked by 1 person

    • Jessi Finds Out Fibro says :

      I hated that analogy until you said otherwise, so thank you. It was the first thing that popped into my head and then the brain fog wouldn’t let me come up with anything better, and I do love my books, and fonts 🙂
      And you! ❤
      Happy Valentines, Beautiful! I hope it came wrapped up with magical moments.

      ((soft hugs))

      Liked by 1 person

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