Written by Mikki Rothbauer, MSW, LICSW on August 29, 2019
As I reflect about hidden burns and the challenges they pose for survivors, I must acknowledge the countless survivors who have openly shared their thoughts and emotions about this topic. I have seen pain and suffering from survivors and admire their strength and bravery as they address the complexity of healing emotionally from a hidden burn.
This is a question someone outside the burn community may ask. A hidden burn is a burn that can be covered by clothing or isn’t visible to the eye, such as a thermal or electrical burn. I would add that a hidden burn is hidden pain. This pain is real. This pain is justified.
As a burn care provider, I have seen a large spectrum of perspectives about hidden burns from patients, family members, and the community. For patients and families, these perspectives can often change during the hospital course and post discharge. Often when patients are first admitted with hidden burns, they or their families make such comments as “We are just thankful it isn’t on her face” or “At least I will be able to cover it up.” These statements may be true but can be difficult to hear for a survivor who is feeling the physical and emotional pain of the injury and interprets this as dismissive. As survivors recover and heal, the burn is still a part of daily life.
One challenge that hidden burn survivors face is feeling that their experience is minimized by others because it isn’t visible. It is normal for survivors to wish they had a visible burn so what they are feeling and the struggles they may be having are out for the world to see. This isn’t saying hidden burn survivors want sympathy, but acknowledging the burn is acknowledging the pain they’ve experienced and may still be experiencing. Feeling “visible burn envy” is okay. This may not make sense to anyone but you, and that too is okay.
Intimacy is also a significant hurdle for hidden burn survivors. Those who are in a relationship at the time of the injury and others who are initiating a relationship post-injury are faced with the challenge of “showing” their burn. For some this is not an issue, but for others this is incredibly anxiety-provoking. Avoiding intimacy or even relationships can seem to be the easiest solution for some.
Hidden burns can also mean that sharing is optional. You can choose if, when, where, and how you will share your story. This can be viewed as an advantage or a disadvantage. The advantage of it is that you are able to have some control in what can seem a powerless experience. You get to choose if you want to tell your story or to mention it in passing so as not to draw attention. In addition, there is more opportunity to choose with whom and when you want to talk about what happened. However, you may also avoid situations where you would have to show your burn, ignore the burn and all the emotions behind it for months or even years, and miss out on loving and respecting yourself and all you have to offer.
My hope is that if you are struggling with this, you can reach out to your local burn support group, Phoenix Society chat room, or a Phoenix SOAR volunteer as I can assure you there are others who have been in the exact same place as you. There is not a “right” or “wrong” time to share this part of yourself. Your scars symbolize pain, strength, and survivorship.
Hidden burn survivors face many challenges, but there are resources and tools available to you. Creating positive affirmations, writing them down, rehearsing them, and using them is one way. For example, “I am beautiful. My skin represents healing and strength and my loving friendships represent my kind spirit.” Practicing the way you would share your story prior to doing so can decrease your anxiety in that moment of vulnerability. In addition, you can find resources, chats, and forums at http://www.phoenix-society.com.
At Phoenix World Burn Congress, the largest gathering of the burn community in the world, many brave individuals met to share what has been difficult and what has been helpful about the experience of a hidden burn. In addition to survivors, there were significant others, parents, grandparents, children, and friends of survivors sharing their experiences.
There is a sense of gratitude for surviving and being able to talk openly about this subject. Knowing that there are others who have walked a similar path that you are walking makes that lonely path feel less quiet. For many, it was the first time they heard someone share the idea of wishing for a visible burn. It also was a safe place for those who admittedly keep their burns covered because they aren’t ready to share them with anyone. Those of you who have been on this journey know that it is not easy, and it is not without bumps and obstacles. But you have shown resilience, strength, and hope to others in sharing of yourselves and listening to others.
In closing, if you are, or you know and love someone who is, a burn survivor with a hidden burn, I want you to know:
You and your experiences are valid.
Your stories are worth telling.
Your pain is real.
Your perspective matters.
Your scars represent survival and strength.
Mikki Rothbauer is a social worker and psychotherapist at Regions Hospital Burn Center in St. Paul, Minnesota. She has been providing psychological care in the burn community for more than 12 years. She is an active member of the American Burn Association and a strong supporter of the Phoenix Society.