As 2023 Approaches, I’m Entering My ‘Strange and Ugly’ Era

The other day, my friends and I were talking about our mantras for the upcoming year. I usually start thinking about mine sometime in December, so this conversation was par for the course — something about the darkest month of the year makes me yearn for the optimism of a fresh start.

My friends asked if I had chosen my mantra for the new year. To my surprise, I had no idea what it would end up being. For some reason, I kept returning to my mantra for 2018, “strange and ugly.” Something about it resonated with me years later.

I’ve written previously about my insecurities around hygiene and skin care. You would think that, at 28 years old, I’d be mostly free of things like acne, but I guess I’m just that unlucky. While my new probiotics regimen has helped considerably, my body has discovered yet another way to mess with me.

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It started in late 2020. I was struggling with a rash around my mouth that just wouldn’t go away. I tried everything from over-the-counter acne medications to topicals prescribed by a doctor, but nothing seemed to be helping. I assumed it had something to do with the face masks I was wearing at the time, but when the rash worsened, spreading from my mouth to my chin and jaw, I decided to see a professional.

My dermatologist didn’t let me down. He took one look at my skin and diagnosed me with perioral dermatitis (PD), a particularly nasty skin condition with no known cause and no known cure. I was devastated. My dermatologist is generally an optimistic guy, but he told me in no uncertain terms that I would just have to live with it.

I wasn’t convinced. Desperate for answers, or at least a shred of hope, I took to the internet. I wasn’t the only one plagued by this mysterious skin condition. There were, of course, your run-of-the-mill snake oil vendors, shouting the wonders of their life-changing products. But there were also people like me — people who needed to believe they had options.

The past two years have been a battle. I went so long without a flare that I started to hope it was in the past. But my PD returned with a vengeance earlier this spring. Ever since then, I’ve tried everything from herbal remedies to diaper rash paste. As I write this, my chin is slathered in a thin layer of something called Boudreaux’s Butt Paste.

Yes, it’s as embarrassing as it sounds.

How does this relate to my 2023 mantra, you might ask? Because I’ve been reflecting on what it means to be “strange and ugly.”

Every couple of months, I decide I’m tired of stressing over things I can’t control. My skin has been terrible for as long as I can remember, and it’s not for lack of trying. I don’t even want to know how much money I’ve spent on skin care this year alone. The harder I try, the more futile it feels. What’s the point of fighting my body over something that might never change?

I’m not giving up. Just last night, I asked my doctor about scheduling a food sensitivity test, as a fellow PD sufferer mentioned that an allergy to egg whites was responsible for her flare-ups. I’ve heard that diet can be a factor when it comes to dermatitis.

But as 2022 comes to an end, I’m looking at things I want to tackle in the new year. My confidence is one of them. When I claim “strange and ugly,” I’m not actually saying I’m ugly. (Strange, however, is a different story entirely. You should see how people look at me for using a wheelchair!) Rather, it’s a question of possibility.

Maybe I am ugly. So what? Who am I trying to impress? Why?

The driving force behind my 2018 mantra was freedom. Think about all the things that embracing your ugliness could mean. No more fretting about fashion trends. No more fits of comparison and despair.

Embracing my ugliness means embracing who I am underneath the selves I project around other people.

Embracing my ugliness means embracing the parts of me the world might reject — the mental illness, the SMA, even the annoyingly persistent PD.

I am who I am. And that is enough.

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Note: SMA News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of SMA News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to spinal muscular atrophy.