It would be a lie to say that how I look doesn’t matter. Pretending that we aren’t all judged immediately through passing glances and in-person meetings. Claiming that pictures aren’t scanned by thousands of eyes searching for every perfection and, more eagerly, every flaw. I know this. Everyone knows this. 

It’s a world crammed with warring messages, “Everybody is perfect!” and “Plastic surgery is at an all-time high!” “Love your body.” and “Eat less. Exercise more.” You are told that you will never look good enough, but you pretend that you think you are perfect. Fix your face with filters, burn your skin with lasers, and glue more hair onto your head. Wear no make-up make-up.

This plea for flawlessness isn’t new. We are just more aware and inundated with it than ever before. The standards of beauty are more unattainable yet more expected. Unfortunately for people like me, those of us whose faces have been affected by our medical conditions, that hyper-focus on physical perfection shines a light on every abnormality. It has also encouraged people to be vocal with their distress over my features. Quick glances have long turned into stares. Unsolicited suggestions for how I can be fixed come up often. Compliments have become strangely specific, “Your eyes are transfixing” “Your bottom lip has a lovely shape” or backhanded “Great eyebrows. Why would you pluck them like that?” “You would have such a nice smile if you got your teeth fixed”. I’ve had multiple people, mostly men, tell me how beautiful I would be with [insert surgery here] done to my face. 

Before my body broke, I was generally considered attractive. I never had high self-esteem, but feedback from the world made it pretty clear that my look was appealing. I assumed, like many women, that I would grow old gracefully and maintain my looks to a reasonable degree. With an eye for the unusual, I have always found beauty in aging and I looked forward to my etched face finally catching up to my old soul.

I began noticing the dramatic change in my looks about two years into my illness journey. My eyebrows had always been a bit asymmetrical, but those caterpillars started taking different directions. When I grinned, my smile lines would crinkle around one eye and barely crease on the other. The bee-stung lips that once wore lipstick like a dream stopped holding their shape, preferring instead to slant and pull to one side. My cheeks dropped like they were trying to hide under my chin and my jawline slackened like that of an old hound dog. Eventually even the petechiae on my skin became more pronounced. The daily rashes and hives had taken their toll. 

You know how everyone looks different in pictures than they do in the mirror? My mind was so use to seeing my old face that it automatically compensated for my extreme flaws. It still does! When I look in the mirror, I rarely see my new face. Sometimes, if I’m really tired or catch a glimpse of myself in someone else’s mirror, I notice the differences. Mostly, I see it in photos. Taking a selfie is a herculean effort. I have to use strong angles and filters just to look presentable. I try to avoid group photographs. If I have to be in a snapshot I will make an exaggerated face or use what I have on me to hide some of my features. 

I’m not sharing this story to gain sympathy. I think it is important for people to know that for some people, looking different sucks. We aren’t all able to embrace a suddenly changed body. Watching my face degrade quickly and out of my control has been one of the more difficult experiences of living with my chronic illness. I avoid seeing friends who knew me before and I avoid putting myself on display with new people. The loss of confidence affects my sexuality, my social life, and my self-worth. The way I look shouldn’t be that big of a deal, but it is. I care what people think of my face. 

I’ve interviewed plastic surgeons who are honest about what they could achieve with my case. It turns out, not very much. They recommend a full face lift, eyebrow lift, fillers, and facial contouring just to get my face looking “normal” or “nice”. At most, those results would last ten years but more likely, five because of my EDS. I would have severe pain and lasting numbness from my already fried nerves. EDS and POTS also make me a more difficult anesthesia patient. Then there is the money it would cost and the time it would take. Because my facial issues are considered aesthetic and not medical, it would be a vanity procedure. 

The public doesn’t know that I have chronic conditions. They aren’t aware that my invisible diseases have actually altered my body from head to toe. Ehlers-Danlos Syndrome, Migraines, Mast Cell Activation Syndrome, and Small Fiber Neuropathy all show on my face. However, no one can see that if they don’t know what I looked like before. To them, I just look weird.

As I age and continue to wearily fight my health battle, surgery seems less likely. I might learn to accept how I look or I might spend the rest of my life avoiding reflective surfaces. Either way, if you’ve felt like this or have your own battles with image, know that you aren’t alone. Me and my ugly mug are right here with you.