I read an amazing article the other day from Arianek.com entitled, “Pretty/Sick: How Chronic and Mental Illness Affect Our Body Image and Complicate Beauty“. In the piece, Ariane explains what it’s like to have a chronic illness and not be taken seriously because of her appearance.
Most women with chronic illness have to wear a mask. I’m sure men with chronic illness also do this, but I’m focusing on women in this post because I’m much more familiar with our particular “tricks of the trade” so to speak.
If you know a woman with a chronic illness and you say to her, “But you look so good!” after she reveals her condition, you’re not giving her a compliment. You’re invalidating her experience as a human being. I’m sure that’s not your intention, but that’s how it is received.
In order to get a better understanding of what those with chronic illness go through on a daily basis, I’m going to take off the mask and show you the raw, uncovered truth of how much effort we have to put into looking so good, and, maybe even more importantly, why we do it.
“But You Seem So Normal.”
I was recently diagnosed as autistic back in the spring of 2015. I had known I was on the spectrum since 2008, but, because I acted so “normal”, people didn’t believe me.
Sure, I can approximate neurotypical behavior by drawing on what I’ve read in books, studied of others, and learned through trial and error, but I can’t keep it up indefinitely.
It’s not the real me. Just because I’m smiling and nodding in the right places, turning my head to the side to look interested, and having the appropriate social response doesn’t mean I’m neurotypical.
I’m acting. No, I’m not being fake or lying to anyone. I’m simply taking on the role of a neurotypical person for a few hours so I can blend in, enjoy myself, and not draw unwanted attention. It’s like installing a temporary filter.
Trust me, when I leave our little social interaction, I’m going straight home to turn off the lights, slip on headphones, and watch Netflix, or take a much-needed nap to recharge my batteries.
“But You Don’t Look Sick.”
For people with chronic pain, this statement is as irritating and off-putting as the one above it is for those on the spectrum. There is a secret in the chronic illness community that may be so much of a secret that even we, ourselves, aren’t completely aware of it.
Again, I refer to Ariane’s post. A friend of hers who commented on the post said that people with chronic illness often push themselves much harder than those without it. We don’t always listen to our body’s warning signals, either. We’ll just go until we crash.
For me, this is excessive determination mixed with stubbornness and a hint of denial. I’m like that Chumbawumba song: “I get knocked down, but I get up again, ’cause you’re never gonna keep me down!” Right? Us chronic illness warriors are fierce!
So, here’s the ironic thing. Usually, the worse I feel, the better I look and act. I overcompensate. And many people with chronic illness do the same. To look sick, to act sick, to walk out of the house without makeup, without the right amount of sleep, and the right combination of drugs makes us too vulnerable, and either somebody to be pitied, taken advantage of, or both.
In short, it’s not safe.
The personality thing takes a toll on us, as well. We know it’s not socially acceptable to walk around complaining and miserable all the time so we don’t. That does not mean, however, that we are not suffering from a level 7 pain flare or on the verge of a panic attack at that exact moment. We’ve just gotten very good at juggling this stuff internally while maintaining outside composure.
Besides, would you want to work with or hang out with someone who snapped at you, burst into tears, or complained all the time? No. So it’s in the best interest of our survival to hide these emotions whenever we can.
Chronic Illness Takes a Toll On Appearance
Here are some of the changes in appearance women with chronic illness become adept at hiding:
- Pale skin and dark circles
Chronically-ill individuals often have pale skin and dark circles under their eyes. This can be due to poor circulation, chronic pain, lack of sleep, allergies, and medication side effects, or a combination of all these things.
This is where concealer and blush come in handy. The right amount of concealer under the eyes and a subtle application of blush on the cheeks can give a healthy, albeit completely false, glow.
- Glassy, staring eyes
Chronic pain is exhausting, as is lack of sleep. A glassy-eyed stare is common in those living with chronic illness. However, many of us will compensate for that by either avoiding direct eye contact or forcing warmth and life into our eyes. With practice, it’s easy to do, but difficult to keep up with for any length of time.
Also, eye makeup helps. There are contouring, shadowing, and lining techniques that automatically make eyes look brighter.
- Hair loss
Losing hair is a very common occurrence in those with autoimmune disease. The stress of the illness can lead to a condition called alopecia areata, causing patchy hair loss, sparse eyelashes, and thin eyebrows.
It’s easy enough to use a volumizing conditioner, thickening mascara, and an eyebrow pencil if hair is thinner than it should be.
This doesn’t mean the problem doesn’t exist, however, we’re just doing whatever we can to temporarily cover it up.
- Skin rashes
Inflammatory skin rashes are common in those with autoimmune conditions, especially eczema, psoriasis, and celiac disease. Depending on where the rashes are, they can be covered up with clothing or kept under control with an anti-inflammatory medication. The symptoms, however, are still there beneath the surface.
- Inability to gain weight
Saying, “I wish I had that problem” to someone who says they have trouble gaining weight just dismisses the severity of their illness, and, even worse, turns it into something enviable.
Chronic illness is never enviable. You don’t want it. Trust me.
The Struggle is More Than Physical
Chronic illness usually comes in three types, neurological, autoimmune, and mental. None of these are better or worse to have than another. In addition to experiencing pain, feelings of isolation, and exhaustion, the person may also show signs of depression, irritability, anxiety, and lack of interest.
For example, you may find your friend “zoning out” while talking to her about a promotion you just got at work. It doesn’t mean she’s not listening or doesn’t care. She’s either hampered by brain fog, taking an involuntary sensory break due to sensory overload, or is reaching the end of her ability to keep up her “healthy” appearance.
In addition to making sure we look good so as not to attract judgment, looks of pity, or unwanted questions, we also have to make sure we act like we feel good.
This means putting a great deal of effort and concentration into smiling, looking lively, focusing our attention, keeping up with the flow of conversation, and fighting the overwhelming urge to yawn and close our eyes.
This, in and of itself, is exhausting.
Please try to understand that the reason we look and act “so good” when you’re around us is because we don’t have much of a choice. We want to push the symptoms aside, blend in, and get things accomplished before the pain or anxiety becomes too much to handle.
Furthermore, we look good because it’s easier not only on us, but on you. If we put on makeup, wear the right outfit, and plaster on a smile, you won’t be forced to face your own mortality every time you look at us.
Picture a burn victim who wears a mask not only to remain unremarkable, but for the sanity and comfort of others.
This illusion may be protection for us, but it’s also a gift to you. The best way you can acknowledge us and show respect for that gift is to see past the mask and trust us when we say the struggle is real.
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