Scarred, Not Scary

When I was four years old, my family borrowed a log cabin in New Hampshire for what we thought would be a short getaway. The cabin smelled of pine and cedar and sat next to Lake Winnipesaukee. My brother and I roamed the woods and scrambled up the granite slabs overlain with green moss. White boats sped by on the clear blue water, motors buzzing, trailing water skiers.

At dinnertime, my mother rummaged through the kitchen, looking for lighter fluid to start the charcoal grill. Maybe she thought she’d found some. She exited to the porch overlooking the lake, and I stood next to her as she tried to light the grill. It didn’t light. She lifted the can of lighter fluid (which turns out to have been a highly flammable household solvent) and poured it on the coals.

A terrifying explosion enveloped us. My mother and I were trapped behind a wall of flames, the porch railings encircling us, with no escape. Panicked, my mother realized there was one way out, which was to dash through the fire and into the lake. That was what she did, leaving me behind.

My father stood, horrified, on the other side of the porch. He could just see me. He leapt over the railing and grabbed me, yanking me through the porch spokes. He ran to the lake and heaved me into the water.

All this happened in the blink of an eye, but the results transformed me. The fire eviscerated my bottom lip, my chin, and my neck. My skin was blackened with third-degree burns on two-thirds of my body. Burns stretched from my forehead down to my ankles. At four years old, in 1967, I wasn’t expected to live.

Burn care was excruciating, bloody, terrifying, and tortuous. I spent much of my childhood in the hospital, surgery after surgery, being grafted and reconstructed. At home, life was just as challenging. I was mocked and taunted on my way to school, at school, after school, at camp—you name it. As I grew up, I was bullied less, but another problem emerged: boys and later, men. It was hard to date as a severely disfigured woman. I was a perpetual bridesmaid, witnessing friend after friend find their soulmate. Eventually I did marry and raise a family, but it took many years to find the right man who loved me as I was.

According to James Partridge, CEO of the British charity Changing Faces, approximately one percent of the world’s population is disfigured. Disfigurement (alternately referred to as visible difference) can be present at birth, as from cleft palates, birthmarks, and cranio-facial issues. It can also be acquired, as from accidents, fires, or cancer treatment. It happens around the world, across all demographics.

The worst part about being disfigured, once any medical trauma has been endured and survived, is often social. A 2017 Changing Faces survey of 800 disfigured people found that people with visible difference experienced staring, intrusive questioning, bullying, harassment, and job discrimination. One-third of the respondents said they’d been the victim of a hate crime. Where does this prejudice come from?

Recently, I gave a TEDx Talk provocatively titled “Scarred, Not Scary.” I stood on the red TED circle in a sleeveless maroon dress, my scars exposed and lit by beaming lights. I began, “Do I look . . . evil?” I paused, then continued in a hushed tone, “Watch me closely, I might do anything. I might come after you with an axe. I might kidnap a princess. I might destroy the whole planet. You just never know how evil I might be!” The audience leaned in, intrigued. Why was this middle-aged psychologist, seemingly harmless and smiling, saying she might possibly kill them?

Think about Voldemort, Darth Vader, Freddie Krueger, the Joker, Tony Montana (Scarface), or any of the hundreds of other disfigured “bad guys” you’ve seen in the media. Almost all the disfigured characters you know on screen are evil (usually) or pathetic (occasionally). These tropes are present even in children’s movies and cartoons (Scar in The Lion King, Quasimodo in The Hunchback of Notre Dame), teaching children at early ages to be afraid of people who look different.

It was against this backdrop—bullying, social exclusion, prejudice—that I sought psychotherapy for chronic depression as a young adult. I tried psychodynamic therapy, psychoanalysis, family therapy, couples therapy, EMDR. All these modalities worked to some degree, and I’m grateful for every clinician who helped me build the beautiful life I have now, but not one of them showed awareness of the social stigma I faced as a disfigured woman. What could you be missing?

Constant Visibility

It’s important to understand that when you’re disfigured, you have no privacy. Always, wherever you go, people look, stare, remark, and make assumptions. Think of what it would be like if everyone you met instantly knew the worst thing that ever happened to you. Say you were emotionally abused as a child and imagine that everyone you met knew that about you. Further, imagine that total strangers felt free to inquire about it. “Who abused you?” “When did it start?” “How much treatment have you had?” “Are you better now?” “Did it hurt?” The visibly different face these questions wherever we go. People look at us, wonder about us, and follow us with curious eyes.

One night at the Psychotherapy Networker Symposium, I was dancing, mediocrely, at the preconference party, burned arms up in the air, a huge smile on my face. Every year, it’s my favorite part of the conference, letting go and moving to the music with colleagues from around the world. I didn’t realize that one of those colleagues was watching me closely.

He came up to me later, speaking in a hushed voice, like a spy. “Hello, can I talk to you?”

“Yes of course, hello.” I grinned, dance endorphins flooding my body.

“You were burned.”

“Right,” I affirmed. My dancing high began to dissipate. I was done with this conversation. But then, he surprised me.

“I was burned too!” he declared. He reached down and pulled up his pants leg, revealing a small third-degree burn on his right calf.

“I’m sorry to hear that,” I answered.

“I was burned, but I never tell anyone. Nobody knows. No one,” he whispered, like it was a state secret.

“You hide it?”

“Always.”

Most people imagine that being able to hide scars is easier than facial scarring. But being able to hide scars can lead to feelings of shame and great anxiety over whether anyone would accept them if they knew the truth. This fear of rejection can become a self-perpetuating cycle, which gets in the way of intimacy. Nichola Rumsey, a prominent researcher in the field, found that a person’s comfort with their body does not always correlate with the degree of their disfigurement. A badly scarred person might be quite comfortable with their body. Someone with the smallest scar on their arm might be utterly devastated. Body image simply can’t be predicted by just looking at someone.

In fact, a client’s worst problem may not be how they see themselves, but how others see them, making disfigurement one of the few medical conditions that can pretty much be cured through simple societal acceptance.

Validation

In graduate school, I started therapy with John, a psychologist who patiently supported me as I inveighed against my elephantine workload, a neglectful supervisor, and perpetual loneliness. He was a blessed fount of unconditional regard, until one day, unexpectedly, I found his limit.

Since many doctors consider burns to be the most painful condition possible, bandage changes are often conducted under sedation, to spare a burn patient the extraordinary pain. When I was burned, however, this wasn’t the practice. And, for some unfathomable reason, hospitals didn’t use painkillers for children’s bandage changes. I was telling John about the agony of these dressing changes, the screaming of the burned children around me on the burn unit, my own screaming. I felt buoyed with the relief of sharing experiences that I rarely discuss. Then I saw something close in John’s face. His therapeutic energy, always so warm and accepting, vanished and left the room like a ghost.

“What happened? Where did you go?” I looked at him through my tears.

“Nothing happened. I’m here. Please, continue.”

“No. No, you aren’t. I felt you leave.”

Silence lay between us. I watched John think. He took a minute. “Okay. You’re right. I did go away. I just couldn’t take it. It’s ghastly, and I couldn’t take it.”

Although I was hurt at the time, I’ve always appreciated John’s honesty about this moment in our work. It reified the crucial role of good old-fashioned supportive psychotherapy—witnessing and holding, being sturdy enough to fully listen to the deep pain—when working with disfigured clients. People who look different have trouble being seen for who they truly are, and many have never been fully heard. Like me, they may have endured tremendous physical pain and fear. Being an open listener, fully interested in a client’s experience, is vital.

For me, the greatest moment of validation for my experiences came not from any of my seven former therapists, but from a burn nurse, whose name I don’t even know. Like many severely burned people, I continue to undergo surgeries and treatments, even though my injury happened decades back. A few years ago, I was lying on the operating room table, being prepped for anesthesia. I was dressed in a pale blue hospital gown with snaps, ready to be pulled off for the surgery and covered with a thin white sheet. An IV dripped its liquid into my right arm; bright lights blared down on me.

Behind my head, the surgical team bustled, readying tools, bandages, medications. They were masked and gowned, and all out of my sight. The lights, the smells, the IV: my senses plunged me right out of my middle-aged body and back into my terrified four-year-old self. Tears rolled down my face, which no one saw.

“I’m scared,” I piped up in a four-year-old voice.

Instantly, the surgical team rushed to the table. Four masked people gazed down at me with concern.

“You’re scared? Why are you scared?” asked one nurse.

“I don’t know. You’re all so nice. I have no reason to be scared,” I answered, upset with myself for being upset.

The nurse’s face softened. She grabbed my left hand and held it tight. “I’m sure you have every reason in the world to be scared. You’ve been through so much in your life, so very much. But we’re here now, and we’ll take good care of you. I promise.” I knew she meant it.

I have never felt so safe and seen in my life.

Building Skills

Beyond validation and connection, disfigured people require a certain set of skills to navigate the documented reality that people tend to avoid them. This avoidance could be due to an irrational fear of contagion, or to the unceasing representation of the disfigured as being evil in movies. But often, it reflects the fact that most people don’t know what to say to a person who looks different. Regardless of the cause, social avoidance of the visibly different means that it’s often up to the disfigured person to initiate social interactions and to put others at ease.

Although it’s immensely unfair that disfigured people, already disabled and dealing with prejudice, must initiate and manage social interactions, psychotherapeutic work with these clients should include a careful assessment of their social skills and offer ways to enhance them to better manage their unique challenges. Author, advocate, and burn survivor Barbara Kammerer Quayle offers a helpful model for burned people with her social-skills training called STEPS: self-talk, tone, eye contact, posture, and smile. Self-talk refers to the client’s inner dialogue about their self-worth. Tone refers to vocal tone: confident and strong, but not aggressive. Eye contact is about looking at others with warmth and friendliness, neither too shy nor too fierce. Posture refers to holding one’s body with pride, shoulders back and head up. Smiling sends a friendly signal to others that no one need be afraid. This model is easy to remember, adaptable not just for burns, but for disfigurement in general.

Building Support

Even with the right social skills, disfigured people are often in great need of community, of connections with people who understand their experiences. Fortunately, many organizations provide this kind of support. The Phoenix Society for Burn Survivors is the largest organization for burned people in the United States. The American Cleft Palate Craniofacial Association offers resources and information for patients and families. More broadly, Face Equality International is a human-rights group advocating for the fair treatment of everyone with disfigurement around the world. Many clients find these organizations to be empowering.

Connecting with communities can facilitate another important aspect of recovery: meaning-making. In the beginning, even after a person physically heals, it can seem impossible to find positives in suffering; however, a sense of meaning can help a person make a crucial identity shift from victim to survivor. One client, facially scarred in a horrific car accident, told me, “Nothing good came from my injury. It’s been loss after loss after loss.”

I nodded in sympathy. “I know your accident was deeply traumatizing, and you’ve lost a lot with your changed appearance, but I remember something: didn’t you say that you think you’re more patient now with your sister, with her depression?”

“I never used to understand why she couldn’t just pull herself together. But now I get it. Sometimes life is just that bad.”

“Yes. Right. Your sister’s depression used to just annoy you. But now you understand pain—your pain and your sister’s pain. It’s not a lesson anyone wants to learn, but it seems to have helped you connect deeply with other people.”

My client paused. Tears filled her eyes. “I guess that’s true.”

In fact, many disfigured people note they’re more empathic toward human suffering, or they feel braver. Some find deep meaning in helping others cope with the same problems. Many burn survivors volunteer to visit newly burned people in the hospital. They sit by the bedsides of newly burned patients, hold their hands, and offer tangible proof that there’s life after burns. Getting clients to the point of helping others can be tricky, since there’s the risk of invalidating their suffering by pushing them too fast into meaning-making. However, if done with empathic attunement, meaning-making helps with healing.

Getting Out

Some people with disfigurements choose to stay home, rather than face being stared at and questioned. Obviously, this can lead to isolation, social anxiety, and depression. The therapeutic tool of exposure therapy to combat social phobia is useful, with one addition: behavioral rehearsal for questions.

It’s important for the clinician to remember that socially avoidant disfigured people aren’t erroneously imagining that people will stare at them. What might be an anxious but imaginary rumination for the typical withdrawn client is an absolute fact for a disfigured client: people are definitely going to stare at them, and they will be questioned.

Barbara Quayle says disfigured clients benefit from preparing answers for inappropriate questions. I’m frequently asked, “What happened to you?” by strangers at school, work, the grocery store, the beach—no matter where I go.

Like many disfigured people, I have several versions of an answer. For adult strangers, my answer is factual and reassuring, and it ends the discussion: “I was burned a long time ago. I’m fine now. Thanks for asking.” If a child asks what happened to me, I’ll usually engage longer and provide more education for them. If someone I really like asks me the question, I might tell them the story.

Help your clients develop their own answers to questions they’ll inevitably face. Role-play and practice these answers repeatedly, so that your client feels prepared to handle socially awkward situations. Developing positive self-talk skills when they’re stared at is vital, as is having strategies to handle the stares. Do they want to ignore the starer? Do they want to smile at the starer? Do they want to engage the starer in conversation? These are all possible strategies for the uncomfortable moments they’ll face.

Acceptance

When I was 16, scarred and struggling to find a boyfriend, my dear friend Joe said something to me that I never forgot. I sort of loved Joe, who turned out to be gay, and he sort of loved me. Instead of romance, we shared a deep love of The Doobie Brothers, Godspell, and spiritual mysteries. We felt profoundly safe with each other. One day, I talked with him about my scars, their thickness, their shine, and the ways they apparently rendered me unlovable.

“I don’t see them that way,” Joe replied, his brown eyes warm and earnest.

“What?”

“I don’t. I really don’t. To me, they’re like marble, swirling with all different colors and textures, totally unique.”

“You’re kidding,”

“Absolutely not. That’s how I see you.”

This was the first time I ever contemplated that my scars could be anything other than bad. I never thought that scars could simply be what they were, unexpected, different, interesting, just…themselves. Through his artistic eyes, Joe saw me through a lens of love and acceptance. Even decades after this conversation, I weep to recount it.

To love myself as I am has been a lifelong quest. Even now, I catch myself again and again viewing my scars with judgmental eyes. “Look at that ridge. I wish the skin there was smoother. See that indentation? Ugh.” When I can, I notice those thoughts. Awareness helps.

Sometimes I can replace the thoughts with better ones: “Yes, this skin is different. Think of how hard this scarred skin worked just to be here. Think what this skin has been through. I wouldn’t even be alive if it weren’t for these scars, battling their way into being. This is no ordinary skin; it’s extraordinary!”

Acceptance continues to be a journey. The more I can embrace the worthiness of my body, the more I can endure people staring. The stronger I become, the more heart I can give to my clients and others with visible differences. The more I’m out in the world, the more the public sees that people who look different are just…people who look different.

Our journeys are much like yours. You struggle to accept your hair loss? We struggle to accept our facial asymmetry. You struggle to accept your wrinkles? We struggle to accept our scars. Sooner or later, time steals all our beauty, for all of us. But here’s my little secret, an ironic, ridiculous truth that sometimes makes me smile as I grow older: scars don’t wrinkle.

Go figure.