Written by Kathy J. Edwards, PhD on August 30, 2019
Those who meet Elaina Meier or David Vogel for the first time don’t realize they are burn survivors. The scars that tell their stories at a glance have faded or are covered by clothing. It’s only when you hear Elaina talk about facilitating the Phoenix Society for Burn Survivors’ online chat or David talk about working with a burn survivor support group in Boston that you realize there’s more to the story.
Hidden burns present a unique set of challenges for burn survivors and sometimes feel as if they may not be “seen” by others as a burn survivor. According to both Elaina and David, this can have its advantages and disadvantages. Because the scars can be covered by clothing, talking about the injury is optional. They can choose when and where to tell the story, or choose to not tell it at all.
However, the question of whether to display their scars may create anxiety when they consider wearing bathing suits, shorts, sandals, or sleeveless tops. They may struggle with intimacy and wonder how and when to talk about their burn injury in new romantic relationships.
After David left the rehab hospital, many people didn’t understand the extent of his injuries or the reason for his lengthy hospitalization and recovery. Given what he’d been through, he was struck by the indifference from his coworkers and acquaintances.
He had been in a drug-induced coma for weeks due to burns from a house fire. He suffered smoke inhalation and had to relearn how to breathe and swallow on his own. He went through withdrawal from morphine and pain management drugs. There were moments that sent his whole body into a panic, like the time he burned his finger on the stove or when he smelled smoke from a chimney while walking down the street.
For the first year, David wore pressure garments and looked like a burn survivor. People stared and hesitated when he went to shake hands. Gradually, the hair he had lost grew back and covered the parts of his ears where cartilage was missing. Over time, his grafts began to fade and fewer people noticed he looked different. It surprised him when he realized that many people no longer saw him as a burn survivor.
“There is a window of time when people empathize with a burn injury, but the healing process takes much longer than that,” David reflects. “Once you look normal, you are expected to be over it.”
Although David could see the positive side to the dwindling reactions, it required yet another adjustment to his self-concept and body image.
David says that since his burn injury and recovery he has more empathy for others. “We all carry hidden traumas and even when you see a survivor with very visible scars, you are only seeing some of the injury. A burn survivor may have lost loved ones in a fire. You can’t see that from the outside.”
At the time of her injury, Elaina was a college athlete. Returning to the locker room was difficult, not only because of her scars but because she no longer felt like an athlete. However, in the process of losing weight, regaining range of motion, and rebuilding muscle after her burn, Elaina learned to appreciate and value parts of her body she had not valued previously.
Elaina found that it took time to adapt to a new body image. She had to go at her own pace. “There were times and seasons when folks wanted to force the issue and I wasn’t ready.”
But eventually, Elaina was able to utilize strategies to focus on the good rather than the bad. “Instead of fixating on my scars, I learned to look at the things about my body that I liked,” she explains. “Before I looked in the mirror, I set my focus and intention on seeing the positive things instead of fixating on my scars. In time I was able to see the positive aspects of my body image instead of the scars.”
Ann Cook, MSW, a social worker at the Intermountain Burn Center, echoes the value of those positive messages. “It’s human nature to focus on the negatives and to have negative self-talk. We need to work to give ourselves positive messages.”
Ann suggests that it is better to say “I’m managing the issue” than to say “I’m struggling with the issue.” She encourages burn survivors to remember that everyone has something that makes them feel insecure about their body image and everyone has challenges to overcome.
When you start to feel self-conscious, it can help to realize that you are probably focusing on the flaws much more than other people are. To illustrate, Ann recalled a conversation between two teenagers attending a burn camp. The first camper said he felt embarrassed by the burns on his legs and thought people believed he was ugly and weird. The second camper responded, “This is your issue. No one else is thinking that about you.”
Elaina Meier (right) with fellow online chat facilitator Richard Casias
Both Elaina and David find it liberating that they no longer feel the need to tell everyone they meet about their burn injury. They have learned to tell their stories on a “need to know” basis.
After some trial and error and a few “Aha!” moments, Elaina is willing to share what has worked for her. “It’s definitely a challenge, especially in a dating situation,” Elaina says, “You don’t want it to be the thing you lead with, but you also don’t want to wait too long.”
Because her burns have become an integral part of her identity, Elaina feels that it shouldn’t be a stand-alone conversation. She suggests sharing information about the burn injury organically so it’s not a “honey, we need to talk” moment. Instead she might say something like, “I’ve got burn support next Tuesday and I’m looking forward to going so we can’t schedule anything else that night.” That statement is a cue that she experienced a burn injury and she’s okay talking about it.
Elaina suggests that the easiest way to start talking about a burn injury is to practice having conversations with friends and family. “Build it into your day-to-day relationships in a way that’s balanced, proportionate to where you are in your recovery,” Elaina says. Practicing with friends will make it easier to talk about burns in a romantic context.
Practicing conversations, such as those recommended by Elaina Meier, are just one of the many strategies presented in Beyond Surviving: Tools for Thriving After Burn Injury. This course, offered through the Phoenix Society’s Online Learning Community, provides burn survivors and their families with the skills they need to be comfortable, confident, and competent in any social, work, or school situation.
Ann suggests that a burn survivor’s response to intimacy has as much to do with their past experiences and feelings about intimacy as it does with the burn injury itself. Their feelings may be influenced by past experiences in relationships, values, and beliefs, as well as the messages they received about intimacy from their parents.
“Any time you reach for new goals, your unresolved issues may come up,” Ann explains. A new relationship can trigger unresolved issues about body image, intimacy, and trust.
“Think of the triggers as a gift because they make you aware of unconscious processes like anxiety or fear,” she suggests. “The triggers help you learn more about yourself and what’s going to be in your way.”
Some people may need professional help to move beyond the triggers into a place of growth. Others may find that energy-refocusing tools, such as yoga, meditation, Reiki, positive affirmations, visualizations, and breath work can help overcome issues related to trauma, body image, and intimacy.
These techniques create changes on the inside that influence the way you think about your body image and present yourself on the outside. Keep in mind that they are not only useful for people with hidden burns. Anyone who has experienced trauma, a hard time accepting their body image, or experienced fear when starting a new relationship may find it helpful to reframe the experience and channel energy in a positive direction.
For further information on this topic, see the Resource Center and Phoenix Programs sections of the Phoenix Society website, http://www.phoenix-society.org.