Layers II (#99)

When your artwork unexpectedly ends up in a gallery far, far away. Plus: it’s Autoimmune Awareness Month!

“For many living with chronic illness, such as an autoimmune disease, art is a healthy form of self-expression and self-care. Art helps us cope, connect to others, and break through self-perceived limitations. It can be difficult for others to understand our experiences, and through art we can bring our feelings to life.” Autoimmune Association, 2024

Last spring, I gathered you around the campfire to share part of my own autoimmune story, as a prologue to further explore how art can give voice to experiences often hidden from view. Even if part of the experience is visible - such as with the autoimmune skin disorders I manage - art can give voice to “rich emotional experiences living with autoimmunity, and art can provide enlightenment and education into the nuances that are all-too-easily reduced to focus notes in charts.”

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#58: Layers

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I revisit these thoughts again today, as March is Autoimmune Awareness Month. One would think that, with the use of the word “awareness”, that these disorders were relatively rare. Some are, but there also many others that you’ve likely heard about, e.g., Type 1 diabetes, rheumatoid arthritis, multiple sclerosis. And, taken together, “…more than 50 million Americans are living with an autoimmune disease – that’s more people than are living with cancer and heart disease.” (emphasis in bold mine).¹

Further, 80% of those affected by autoimmune disorders are female². Why? A recent Stanford study has found a new possible culprit: the X chromosome, which, in addition to defining sex characteristics, also trigger production of certain proteins. Males only have one copy of the X chromosome (to pair with their Y chromosome), but females have two X chromosomes - and two X chromosomes producing proteins would lead to fatal levels of proteins. To prevent this from happening, the growing female embryo shuts off protein production in one of the X chromosomes, a process which can sometimes make the chromosome spit out weird molecular structures.

And our immune systems love to search out and attack weird things in the body that shouldn’t be there.

Of course, men can get autoimmune disorders, too, so there are other factors that lead to a person developing a disorder - but it’s a great clue in understanding the huge sex differences in autoimmune disorders.

(Also, can we have a moment for video production and animation as a means of communicating complex scientific discovery to the masses? SciArt FTW yet again!)

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Speaking of SciArt, and back to last May’s post: As part of that newsletter, I shared examples of SciArt that shared the various experiences of living with autoimmune disorder, as well as my own creation, below:

Layers (Bryn Robinson, 2023). Collage and acrylic paint. Did you know that sunflowers are a symbol of self-acceptance?

I also uploaded this to Autoimmune Expressions, a virtual gallery on the association’s website wherein people can share their own experiences through visual art and poetry. It was a way for me to add a voice to the numbers sharing various experiences that often remain hidden from the majority’s gaze. Until the next time I felt inspired to make another piece and upload it to the gallery, I thought the occasional perusal would be the extent of my engagement in the gallery.

(If you haven’t visited yet, it’s fascinating to see how people use art to tell stories. I pop on every so often to see new creations…)

Vertigo (J.P. Brogan, 2024). “Meniere’s disease feels like being on a roller coaster. It’s unpredictable, bringing sudden vertigo out of nowhere, making the world spin madly around you. Add in the relentless ringing in the ears, sometimes so loud it drowns out the world. Focusing on a conversation or a task becomes a challenge. Walking straight is suddenly impossible. Driving is life-threatening. And then, as quickly as it came on, it’s over. Until the next time. And you never know when that next attack might be. It’s a battle that takes a physical and emotional toll.”

Where Are You (Nic Swan, 2024). “My autoimmune can’t be seen but I feel wretched and trapped by it.” I LOVE THIS ONE.

This Week in SciArt

But I had no idea some of the submissions would then be selected for further advocacy:

I am excited to inform you that your submitted artwork for the Autoimmune Expressions Project has been selected for presentation at our upcoming Autoimmune Community Reception in Washington, DC! This is an incredible opportunity for guests and donors of the Autoimmune Association to see your piece showcased.

Email, February 1, 2024, from the Autoimmune Association.

😳

So Layers is now in a pop-up gallery! If you’re in Washington, D.C., tonight (March 7), you can see a print of Layers - along with other selections from the gallery - at the reception and event taking place at the Sidley Austin Law Firm from 5-7pm.³

Many thanks to the Autoimmune Association for sharing it alongside others’ stories. I can’t wait to see and hear how the event went.

Update (March 9): It went! It looks like the event was part of a larger day in Washington, lobbying legislators to increase funding for autoimmune research.

🥹

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1. Press Release from the Autoimmune Association, 2024

2. https://autoimmune.org/autoimmune-awareness-month/

3. I wish I was closer to attend - and then go back to some of the killer DC food stops from my visit back in 2019. Mmm, BUL Korean Chicken…