Why We Need to Change the Way We Talk About Skin Cancer

“It’s called Basal Cell Nevus Bifid Rib Syndrome.”

I blinked a few times and stared back at my doctor. He said it again, but it didn’t help. It took about five rounds of “repeat after me” before I could say it right. Even then, the diagnosis made as much sense to me as, “Basil Leaf Nimbus 2001 Syndrome.”

That diagnosis happened about 10 years ago when I was almost 13 years old. Since then, I’ve learned a lot about Basal Cell Nevus Bifid Rib Syndrome. I learned this rare genetic condition was the reason I had 5 massive keratocysts in my jaw as a 13-year-old girl. I learned it was the reason for my abnormally large head at birth and is likely the reason for the blindness in my left eye. I learned there’s a lot we still don’t know about the condition because of its rarity and relatively recent discovery. And several years after my original diagnosis, I learned it could apparently be called a much nicer and easier to pronounce name: Gorlin syndrome.

The most important thing I learned about Gorlin syndrome was brought to my attention when I met with a genetic counselor as a young teen. She gave me pages and pages of research articles to read, one of which included a full breakdown of the symptoms associated with my new syndrome. In this article, under the “Morbidity/Mortality” section I was reassured that Gorlin syndrome was not likely to kill me or shorten my lifespan, which was comforting to hear. But just one sentence later I was told about the basal cell carcinomas (skin cancers) that I would inevitably start getting soon, no matter how much I avoided the sun. I was told about the scars and skin damage, and was told because of those scars, “a poor cosmetic outcome can lead to social difficulties, including difficulty maintaining employment.”

So as I read this section of the article as a teenage girl, my basic understanding of it was this: The good news is you’re not gonna die! The bad news is 30-year-old you might look like you got a facial from Edward Scissorhands. And, honey, that’s not much better!

Looking back on this article, it sometimes seems easier to brush the writers off as “mean” or “insensitive,” but the writers themselves were not the problem. In reality, the article simply demonstrated two disturbing truths about our social world. One, is that conventional beauty and social and economic success are astonishingly correlated in our society. So much so that even research professionals believed scarred or damaged skin could get you fired from your job or destroy your relationships. That is a huge problem in and of itself, and it’s one I’ve been advocating to fix for years. But that’s not all. The article also draws attention to a common and demeaning belief in our society that skin cancer is by and large an “ugly” disease.

In today’s world, pictures of big abnormal moles and stitched up facial wounds are used as “scare tactics” to discourage tanning. We’re told how tans may look sexy now, but the disfiguring scars will make us regret it later. I seems like an effective strategy at first — constantly tanning can be dangerous, so we should use whatever argument necessary to convince people to stop? But the fact is, there are significantly better arguments for why skin cancer sucks. “It’s gonna make you ugly” should not be number one on that list.

In November of 2016 I was diagnosed with my first basal cell carcinomas. I had two on my scalp and one on my left temple. They were just the first of many I will get throughout my lifetime. The skin cancers on my scalp were “scraped” off, and treated with a topical cream called imiquimod that costs $10 or $20 with insurance, but can cost hundreds of dollars without it. Full treatment and excision of the carcinoma on my temple cost almost $1,000 in medical bills, even with good insurance. Carcinoma removals can sometimes cause permanent nerve damage at the area of excision, and can be a little scary at times because when someone cuts into the deeper layers of skin on your temple, you hear your skin make a weird “crunching” noise that it nothing short of creepy. Healing time can also be painful, especially if you’re used to falling asleep with the stitched and bruised side of your head resting on the pillow. But the truly sad part of all this is none of those things were the reason why I cried on the day of my excision.

I only cried when I looked in the mirror.

I looked in that mirror and for one split second my confidence cracked. I looked at the inch and a half long wound on my temple and knew it could be the first of many. I imagined a scar like that on my check, my jaw or my forehead. For a split second I wondered if the researchers from the article or the creators of those anti-tanning campaigns were right. I thought about my future scars and wondered if they could someday make me “ugly,” “undesirable” or “unwanted” to my future friends, my future husband or wife, or even my future employer. And in that moment, I cried.

Even if it’s the slow growing and “easy” to treat kind of growth, skin cancer is still no “fun.” It’s costly, nerve racking, sometimes painful and frankly just a tiny bit annoying when you realize that you will now be monitoring the UV index on your phone every single day for the rest of your life. But there is one thing skin cancer is not: it’s not “ugly.” The skin cancer scars I have (and the ones I have yet to get) do not disfigure me. They are not ugly and they are not evidence of my “damage.” They are evidence of my strength. I know there will be times in my life I will forget that —  times I look in the mirror and feel something in me start to crack. But I also know this: if I surround myself with the right people in life, there will always be someone there to remind me of the truth.

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Thinkstock photo by: Marco_Piunti