We have all been told those infamous words, “You don’t look sick,” more times than we care to recall. Due to this, I thought I would take a different spin on that ever-so-popular saying by digging deeper into why this seems to be such a persistent statement addressed to most of us in the chronic illness community.
Why do people say that? I think the better question is, why do people feel the need to label, separate, and to enforce such a vast divide between the appearance of the “sick” and the “healthy” to feel comfortable and safe? And why, if we blur the lines, if we dare not to wear our “sick clothes” correctly, if we seek to be a part of the land of the living...we are dangerous.
This blog will delve into these and matters and why wearing makeup, as silly as it sounds, is a conversation to be had.
A little history on the use of makeup:
I am not a historian by any means, but wearing makeup is not a new thing for the human race. The history of cosmetics spans at least 7,000 years and is present in almost every society on earth. Cosmetic body art is argued to have been the earliest form of ritual in human culture. It is believed that women invented specific makeup formulas in ancient Rome to enhance men's and women's eyes, smooth the skin, and amplify their overall appearance. Humans have used this art form in various forms, from characters portrayed on the stage to war paint to cover up and show off their features - since Kohl was first discovered and used as eyeliner.
I am giving you this cliff notes makeup edition to ask why it is unfathomable for some to think that this natural, ritualistic, age-old extension of one’s beauty must only be for those viewed as healthy. Paradoxically, why is it that those who are living with a chronic illness or disability and wear makeup are being “misleading” if they do?
My argument is this: people want the “sick” to “look sick” and the “healthy” to “look healthy” so they can separate us from them. Because if I (Kelli with lupus) look like Suzy-Q (non-lupus-rando), then Suzy-Q may think “sick” looks like her. This sets off a frenzy of fragility in her mind as the lines between our worlds begin to be erased, and she starts to panic and feel the weight of her own mortality pressing down on her.
All because of lipstick. Yep. I know. I wish it weren’t true, but I have seen this and felt this directed at me for decades. As I have come to realize, I am not responsible for, nor can I manage, people’s reactions and feelings about my illness. But, for the sake of learning and growing together, I will explain why I will not conform to the “sick” and “well” categories and why it is about so much more than mascara.
This is something I can control:
Lupus is an unpredictable illness: Lupus and other chronic diseases like it are fluctuating and unreliable. Because of this, it is very difficult to feel like you have much autonomy over your body. Your body feels most days as if it has been hijacked, not just from the physical manifestations of SLE but from the medication side effects and overlap conditions as well. Other factors, like hormonal changes and mental health complications, can invariably make you feel like you have lost the wheel of your life and are slipping and sliding with no way of course correcting.
That is when a little correcting concealer or a cat eye comes in. Wearing makeup is what I like to call “controlling the controllables.” I cannot control how much protein my kidneys are spilling, how low my white cell count is, or my swollen joints, but I CAN control what lipstick I wear or if I want to put a fun eye shadow color on.
Is it life-saving? No. Is it life-changing? Probably not. But is it showing up for myself and life-enhancing? YES. Now, I am obviously using makeup as an example. Still, there are so many other ways of “showing up for yourself” and incorporating ways to take some power back in what can feel like an often-powerless journey.
Wearing makeup is showing up for myself, not for you:
Teaching your brain that you care for yourself: Every day, we send signals to our nervous system that either tell our minds that we are safe or unsafe. We have the power to remind our bodies and our minds that we care about ourselves and our well-being. One of the ways we can “show up for ourselves” is to incorporate self-care that makes us stop and acknowledge that “we are doing this because we care for ourselves and we matter.”
I do that every morning when I take a few minutes and put on makeup. The way I present myself is not about impressing anyone; it is not about trying to confuse anyone else, either. It is a choice I make to show up for myself.
“Wearing makeup is showing up for myself, not for you.”
Finding joy in taking care of yourself: I am sure many of you have heard me say this before, but I find joy in art. Makeup, to me, is art. You can paint your canvas as much or as little as you want every day. I find joy in that. I understand not everyone does… and that is okay, but the point is to find the things that bring you joy and incorporate those into your daily self-care practices.
Self-care isn’t vanity, self-righteousness, or narcissism. It isn’t overindulgence either. It is the acknowledgment that if you don’t care for yourself, you will not be able to care for others. It is understanding what we need to be a healthy, functioning human being and care for ourselves as a whole - so we have the energy, enthusiasm, and empathy to give to those around us.
Appropriate self-care has been linked to many health benefits, including an overall improved mood and reduced anxiety. Self-care is the key to living a life of balance.
“Self-care is never a selfish act—it is simply good stewardship of the only gift I have, the gift I was put on earth to offer to others.” -Parker Palmer
I am not trying to impress or confuse anyone; I am trying to be a part of the land of the living:
Unconscious incompetence: As I mentioned in the beginning of this blog, people really like to label and categorize to feel “safe.” Because two-thirds of Americans feel uncomfortable being around those in the chronic illness/disabled community, it’s no wonder that someone wearing makeup and trying to appear to be a part of the “land of the living” might cause disruption of the status quo.
Unfortunately, there are still so many biases and stigmas toward the chronic illness and disability community that prevent people from being accepted as they are. We (the chronic illness community) are constantly towing the line between trying to live our lives for ourselves, and not get plowed down by these harmful stereotypes.
There is an unconscious incompetence, an alarming low level of health literacy, that prevents the general public from understanding how lupus works. And frankly, I get really tired of educating people again and again. The “don’t look like that or people won’t believe you have lupus” comments are growing old.
And the eyeliner point of the story is:
At some point, you just have to stop caring. People's comments don't define you. Last time I checked, we are all living finite lives, with no guarantees of days. So why spend them trying to appease other people's opinions about an illness they do not understand. Why squander your days trying to fit into other people's boxes. Wear the freaking lip gloss. And don’t apologize for it.
Time to shine, in whatever shade works for you.
Written By:
Kelli (Casas) Roseta
**All resources provided by this blog are for informational purposes only, not to replace the advice of a medical professional. Kelli encourages you to always contact your medical provider with any specific questions or concerns regarding your illness. All intellectual property and content on this site and in this blog is owned by morethanlupus.com. This includes materials protected by copyright, trademark, or patent laws. Copyright, More Than Lupus 2024.
January 2024
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