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For Some with Rheumatoid Arthritis, Beauty Really Is Pain

By Ashley Boynes-Shuck

Fashion and arthritis aren’t typically topics that go hand-in-hand. But for millions suffering with various forms of arthritis, fashion can become either a problem, or an escape.

Sometimes, it’s both.

I’m someone who grew up being very interested in the world of fashion and beauty — and I still am to this day. As a kid I’d play with the plastic 1980’s fashion plates that were all the rage. I’d dress up my Barbie dolls and, then, in middle school, became obsessed with makeovers and using my camcorder to put on fashion shows, all because of the movie Clueless. I’d make collages out of fashion magazine editorials and in high school would, for two years in a row, devote my semester-long art project to fashion design. Come my senior year of high school, I’d even enroll in an independent online fashion design course through the University of Missouri to fill my study hall periods, and by the end of my high school career, was voted Most Stylish.

While I look back at some of my high school and college fashion (and hair) choices, I may cringe. But it is evident that I was always a risktaker with my clothing choices, and even in my 30’s I still pursue that interest. I’m currently taking an online course to earn a fashion certificate from the Parsons School of Design in a program offered alongside Teen Vogue, and I recently interviewed fashion designer and RA patient Michael Kuluva (who I now consider a friend) for Healthline. In 2015, I was inducted into the Pittsburgh Fashion Hall of Fame.

But what does this have to do with health?

You see, the whole time I was bedazzling outfits for my dolls, saving up money for designer handbags, scouring vintage shops and secondhand stores, and obsessing over what outfits I’d wear day-today, I also was battling a chronic incurable illness — one that I’ve had since childhood.

You may recall another article that I wrote for this very publication entitled Writing Away the Pain. When I was forced to quit sports in my teenage years because of my health woes (particularly that of juvenile idiopathic arthritis which has now turned into adult rheumatoid arthritis,) I had to find other hobbies and interests to bide my time. While I was always interested in spending time with friends, I had to have ways to creatively express myself. (Maybe that’s the Libra in me!)

I could not remain idle and needed something to fill my time and my brain. So I turned to writing, which has led me to my career today. But I also turned to fashion, which has afforded me other ways to express myself and cultivate my talents, despite RA and other chronic illnesses stealing some of my other talents and interests away from me.

It might be easy for some to understand how writing became a way for me to cope with illness — but perhaps it is harder to understand what fashion did for me. After all, writing is emotional and intellectual — but fashion just seems superficial and shallow, especially in the midst of illness, doesn’t it?

The movie The Devil Wears Prada does a good job of breaking down how fashion influences people whether they like it or not. Actress Meryl Streep in her wonderful role as Miranda Priestly explained:

“‘’This… stuff’? Oh. Okay. I see. You think this has nothing to do with you. You go to your closet and you select… I don’t know… that lumpy blue sweater, for instance because you’re trying to tell the world that you take yourself too seriously to care about what you put on your back. But what you don’t know is that that sweater is not just blue, it’s not turquoise. It’s not lapis. It’s actually cerulean. And you’re also blithely unaware of the fact that in 2002, Oscar de la Renta did a collection of cerulean gowns. And then I think it was Yves Saint Laurent.. wasn’t it who showed cerulean military jackets? I think we need a jacket here. And then cerulean quickly showed up in the collections of eight different designers. And then it, uh, filtered down through the department stores and then trickled on down into some tragic Casual Corner where you, no doubt, fished it out of some clearance bin. However, that blue represents millions of dollars and countless jobs and it’s sort of comical how you think that you’ve made a choice that exempts you from the fashion industry when, in fact, you’re wearing the sweater that was selected for you by the people in this room from a pile of stuff.” 

Perhaps a better way to look at how fashion has shaped our culture and how it is deeply embedded in our everyday lives is through the docuseries States of Undress on Vice Network, where host Hailey Gates explores global fashion and the sometimes-ugly, sometimes-inspiring issues that the industry often ignores. It showcases what an important cultural role fashion plays in the daily lives of all citizens — and what an important place it has in world history, too.

So, you see, it’s not just my personal history that fashion has impacted: it affects all of us.

But for some of us — those of us with sickness, pain, or mobility issues, fashion can be scary, and it can sometimes be bleak. There have been times in my life, in my journey with rheumatoid arthritis and other medical conditions, where fashion and I found ourselves at odds with one another.

In fact, both on my Arthritis Ashley blog and in two of my books, Sick Idiot and Chronically Positive, I occasionally address these issues.

For instance, there aren’t many adaptive devices for styling one’s hair. Nor are there many ergonomic or arthritis-friendly makeup tools or brushes. It may seem like a non-issue to many, but it’s such a problem for me that I’ve considered approaching manufacturers about the issue.

Adaptive clothing is also an obstacle for many, particularly for people who use wheelchairs or who can’t button or zip their shirts or pants with ease.

Shoes are hugely problematic. Mourning the loss of my stiletto heels and platform pumps has honestly been a difficult part of my health journey and while it seems so silly, I miss high heels so very much. I never dressed for men or for other people. I have always just dressed for me. But nonetheless, throwing on a pair of teetering stilettos (the higher and strappier the better!) made me feel powerful. Sexy. Womanly.

And I know that the idea of this certain kind of feminine aesthetic is a cultural construct that was, probably, created by a man. (No offense to men.) But it doesn’t matter: I still loved them. I loved how they elongated my short legs. How they drew attention away from my swollen knees and the scars all over them. I liked how if I limped a little in heels, people would simply question if I made a poor shoe choice, or I “had something wrong with me.”

But mostly I just miss the freedom of being able to wear whatever I want on my feet. I want to get up and pick out my shoes, jewelry, and clothing without worrying about pain, or braces and casts, or whether I’ll be worsening already awful damage in my joints. Yes, most days I just want to be comfy. Yet, some days, I want to wear whatever I damn well please — and my body doesn’t always allow me to do that.

Shoes and clothing are the least of my worries, sure. Most people with medical struggles would agree. But it’s nice to feel good about yourself, and sometimes that is hard to do when you are always hurting or sick. When your’e constantly playing the role of the patient, it’s simply lovely to get dolled up and feel like you are looking “normal” once in awhile. Now, mind you, sometimes my “normal” involves me having purple hair, or rocking a handbag shaped like a grapefruit, or donning a leather jacket and a skull t-shirt. Other times, my normal is a conservative floral wrap dress or a nautical-themed ensemble. Sometimes it’s yoga pants or sweats or a flannel. Sometimes it’s a body-hugging bandage dress. It’s whatever I want it to be. But, to me, being able to make those choices mean that fashion is freedom. And when that freedom — or any freedom — is taken away because of illness, it hurts.

It hurts when my ankles are too swollen to wear my sneakers, let alone my espadrilles. It hurts when I have to spend hundreds of dollars on custom-made orthosis for my feet and hands instead of the handbag or makeup mirror that I want. It hurts that we had to go buy a second (cheaper!) wedding band that’s a size larger, so that I can actually wear something on my ring finger because my original wedding band and engagement ring set no longer fit me most days, due to the swelling.

On a larger scale, it hurts when the fashion industry doesn’t ever portray differently-abled people in their ads, when they rarely use people with disabilities in their runway shows, and when they use things like canes and wheelchairs as props or accessories.

It hurts when assistive devices and adaptive clothing mostly come in “old-lady” patterns and styles: what about us younger folk?

Arthritis-friendly tops don’t need to look like hospital gowns just because they are going on the body of someone who is sick. Canes and wheelchairs can be jazzed up a bit in ways to suit a younger, fashionable demographic who sometimes also need to rely on those items.

Orthotic shoes? Don’t get me started on orthotic shoes: something has got to change there. Thankfully, flats and creepers have come back into style, but orthotic sneakers still have quite a ways to go before they are considered fashionable by even the most unfashionable standards.

Fashion should consider all types of people. That’s my two cents on the issue. While fashion and writing have helped me get through many a hard time, health-wise and otherwise, and while both have allowed me to express myself and enhance my personal and professional lives, the fashion and publishing industries need to begin to be more inclusive and intersectional in the people, voices, and bodies that they represent.

People living with disabilities or illness of all ethnicities and genders should not only be included in advertising, magazine editorials, and fashion shows, but it should be done in an authentic, organic manner. People living with chronic pain or mobility issues should also be considered when it comes to the design process of handbags, clothing, and beauty tools.

After all, they say beauty is pain … but those of us living with pain wonder, does it really have to be?

Ashley Boynes-Shuck is a patient expert, freelance writer, health news reporter, and published author of the books Sick Idiot, Chronically Positive, and To Exist. She writes for Healthline. com, is a patient engagement liaison for the Autoimmune Registry and is currently working on her 4th book, a fiction novel. Ashley resides in Pittsburgh, Pa. 

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