Why Makeup Is A Crucial Tool For Women With Chronic Illness

Bustle presents our Beauty IRL package, a tribute to our readers' love of beauty and the way they use makeup and skin care to express themselves, to embrace their identities, and to self-soothe. Check out more of those stories here.

I wore makeup for the first time when I was 15 years old. It was August of 2006 and I was getting dressed in a Washington D.C. hotel room before dinner at my family reunion. Much to my mother’s chagrin, I insisted on wearing a long-sleeved dress that night. Just a few weeks before, I had a PICC line inserted into my left arm to facilitate aggressive treatment for multiple tick-borne diseases, and I was did not want anyone see it. Even when covered by a thin white sleeve, the catheter running from my arm to my heart still prompted stares and questions.

Readying myself to walk into the Maryland summer weather, I stood in front of the hotel mirror in my winter dress and willed myself to feel pretty. But despite the fact that I had managed to cover the PICC line, I looked at my face and, probably for the first time, realized that I looked sick. All I could see were my swollen eyes resting on top of dark circles that seemed to clash with my pale skin.

My mom didn’t say anything about the dress after that. She ushered me into the bathroom and handed me her lipstick and mascara. She helped cover the bags under my eyes, brought color back to my lips, and let me wear the long sleeved dress in 90-degree weather without a word. It was the first time I had worn makeup without a theater costume, and it felt like new kind of costume in itself.

As years passed filled with persistent and sometimes debilitating symptoms, I felt pulled between two extremes. I was desperate for people to understand and empathize with what I was going through with my illness. But at the same time, I was terrified that if I told them the whole story they'd think I was weak, or worse, they wouldn't believe me.

So I took the safer route. I learned many ways to cover up my illness, but makeup was always the fastest and easiest solution. It played a leading role in my efforts to put on a brave face, to not let people see what was going on behind the scenes, even as my symptoms worsened. Still, makeup was never something I learned to love. To this day I still don’t know how to put eyeliner on my top lid — powder, concealer, lip gloss and mascara are all I wear. I haven’t changed my makeup routine since I first started wearing it back in 2006, even though so much else has changed.

I’m much healthier these days. And though I’m still wearing makeup, I’m not fighting as hard to hide my illness. Through my work with Suffering the Silence, a 501c3 organization dedicated to leveraging the power of art, media, and storytelling to raise awareness around the life experiences of people living with chronic illnesses, I now share things about my journey with chronic Lyme disease that I once struggled to even talk about with friends and family. I also have the privilege of talking to other people, especially other young women, about what it's like to live with chronic disease, and I am always overwhelmed by the consistency of our experiences. Regardless of diagnosis, many of us share that same urge to conceal the effects of our illnesses, and we often use makeup to project that normalcy we crave.

A close friend of mine, Jacqueline Raposo, doesn’t use makeup at all when she is “muscling through” her chronic illness at home. Still, she tells me, “When I do have to muscle for social events, I’m grateful for the shield that makeup provides for the times that I want to hide how I feel. If I expressed how my body is feeling at all times, I'd make for a sad sight. So adding some color, depth, and confidence to my face allows for a bit more power over how I present myself physically to the world,” she says.

Other women have shared similar experiences with me, telling me things like “Lipstick makes me look 60 percent more alive,” or, “You wouldn’t believe how many people say I look like a different person with makeup on.”

Incorporating a makeup routine into a day filled with the intense fatigue that accompanies so many invisible conditions is a balancing act, but is still “totally worth it,” says Rebecca Barnett. Rebecca lives with Gastroparesis, Dysautonomia (POTS), and a pituitary tumor. “Makeup is my motivation to get out of bed for at least an hour each day. It's my chance to feel confident on the days where my body feels horrible," she says.

“Though many people can't ‘see’ my Lupus, I always look exhausted and drained of color without makeup," says Erica Lupinacci, who co-founded Suffering the Silence with me.

“When I feel too sick or not in the mood to do my complete makeup routine, I'll still do tinted moisturizer, concealer, blush, and some mascara. Those products brighten my color, hide my dark circles, make me look a bit more lively, but don't take too much time or effort," Lupinacci explains. "When I'm feeling good or have to go somewhere when I want to look as healthy as possible, I’ll take the time for a longer routine with more products. I'll use the four products above with primer, setting powder, contour, eye shadow, eyeliner, and maybe a lip color. Living with an ‘invisible’ chronic illness, I am constantly trying to find the balance between appearing well enough to live the life I want but 'sick enough' that my illness is taken seriously.”

"Looking sick enough" adds a complicated layer to wearing makeup in the chronic illness world. Sufferers of chronic illnesses may wish to present a certain self to the world while also wanting that world to acknowledge the hardships of living with such a health condition. Many people, myself included, often worry that people don’t believe or understand how sick we really are, and wearing makeup to look healthier doesn’t make that any easier. “I think makeup can serve as a metaphor, at times, for covering up the truth,” a friend suffering from multiple tick-borne diseases, who asked to remain anonymous, tells me.

“[Makeup] is not inherently a bad thing, but it affords people a mask. Chronic illness is often invisible, but makeup can add an extra layer of that. My disease is already something only I can see and detect and understand,” says Leah Oren, a Suffering the Silence intern who lives with Lyme disease, two co-infections, and two infection-induced autoimmune conditions. “I feel like I can’t wear makeup because it makes me appear healthier than I am. By covering up the few physical aspects of my illness, other people who don’t understand the concept of an invisible illness take my improved appearance as evidence of me being ‘better’. By wearing makeup and putting on a form of disguise to mask my illness, it feels like I no longer have the right to be upset by comments like, ‘you look so good,’ or ‘you don’t look sick!’”

It’s this recurring phrase — “But you look fine!” — that rings in the ears of the invisible and chronic illness communities. “It may seem crazy to ever want to look sick, but it can be so hurtful and frustrating to hear ‘well you look fine!’ over and over again after telling someone you're sick,” Lupinacci says. Since people can’t see how we feel from the outside, they can’t always understand what we feel like day-to-day, and this lack of understanding can be incredibly isolating.

Knowing this, I find myself in a difficult place with regards to how I physically present myself to the world. I want to push back against those feelings of isolation that so often come along with chronic illness. I want people to empathize with my experience and with the experiences of other women in this community. I want people to understand how many young people live with chronic illness. But sometimes, I also just want to look good.

We hide our illness experiences by not talking about them, by putting on lipstick, by making sure people see a "healthy-looking" face. But maybe we also do it for ourselves. When I look in the mirror, I want to feel beautiful. Do I need to worry about hiding the truth of my experience if I use makeup to do this?

It’s not just women living with chronic illness who can feel the need to put on a makeup mask. People wear makeup for all kinds of reasons: A Bustle survey of 1,800 millennials saw answers that ranged from "It makes me feel confident" to "I feel like I'm required to wear it." Sometimes we wear makeup for ourselves as much as for the people who look at us. Back in 2006, maybe I wasn’t as worried about other people thinking I looked sick as I was about seeing myself that way.

“The power of makeup has been a nice reminder that through all of this, that the old me is still there,” my friend Nicole, who asked to go by first name only, tells me about her illness experience with Lyme disease. “I am still the same person. If some concealer, blush, and mascara have to help remind me of this, I'm all for it.”

When living with any chronic condition, finding confidence and self-assurance is incredibly important to finding your footing day to day. There is certainly bravery in using a bare face to show the world the truth of our illness experiences, but there is also strength in taking back the reigns and presenting yourself in the way you want to be seen.