A View From Both Sides of the Bed Rail

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Combining Personal Experience and Professional Training to Help Others

Healthcare Worker Comforting Patient

When we first approached Liz Dideon Hess about writing an article, it was in hopes that she could offer insight into what it is like to work with burn survivors when you have been on the “other side of the bed rail.” Because Liz is both a social worker in a burn unit and a burn survivor, she speaks with the voice of someone who’s truly “been there.” Liz, who was injured as a college student, credits her parents for playing an integral role in her recovery, as supporters and as advocates. Her parents helped empower her and were deeply motivated to help select the care that worked best for Liz’s recovery. These factors helped Liz develop a passion to utilize her professional skills and personal experience to advance the best care for burn patients and helped shape her personal understanding of the need for resources for emotional healing from burn injury.
Here is her story:

A View From Both Sides of the Bed Rail

By: Liz Dideon Hess, LCSW

When I first entered college and chose to study social work for my undergraduate degree, I didn’t have much direction about what my future career would look like; I just knew that I wanted to help people. After my first 2 years there, I had learned a lot but still didn’t have a vision for what kind of social work was most important to me.

Then, the summer before my junior year of college, I was burned in a grease fire. I remember feeling shocked. One moment I was a healthy, active 21-year-old and then suddenly I was in an intensive care unit in the burn center, being told that 40% of my body had been burned. I would need skin grafts, pressure garments, and, for a short time, a wheelchair to get around. It was hard to believe that something that only took moments to happen could require such a lengthy, involved recovery. I experienced what it was like to be in pain, how it felt to be at the mercy of the medical community, how difficult it was to be vulnerable and ask for help, and that real support could make the worst moments more tolerable. I didn’t realize that the education I was getting on trauma, suffering, and the burn community would prove just as valuable as anything my college classes had to offer.

A year after my burn injury, I volunteered at Camp Susquehanna, a camp in Pennsylvania for children with burn injuries. It was there that for the first time I met another burn survivor and I began to think about my injury differently. Instead of thinking about my experience in isolation, I realized that there was a whole community of people whose lives had been affected by burn injuries. I met young burn survivors and learned about the tremendous obstacles they faced, such as bullying, staring, and trying to make sense of their trauma. Some of the campers had very minimal support from friends and family. I remember feeling gratitude that I was already a young adult when I was burned and that I had such a strong support system throughout my recovery. Suddenly my career path seemed obvious—I was passionate about helping the burn community and my own experience had given me unique insight into the needs of burn survivors. Although my family and I did not have a social worker to help support our recovery, I imagined that a burn center social worker could positively affect the emotional recovery of burn patients and families. I returned to Lehigh Valley Health Network, where I was once a patient, and began an internship in the burn unit there as its first clinical social worker.

It has been 10 years since I first stepped onto the burn unit as an employee. Although my job is incredibly rewarding, it takes a lot of work, both personally and professionally, to be emotionally healthy enough to use my personal experience and training to help others. I use a variety of important techniques to help me do that, including

  • Talking to co-workers and other mental health providers about the challenges that we face
  • Being self-aware and offering myself compassion when I notice that I am worn out or significantly affected by an experience
  • Maintaining specific boundaries around work and home (For example, I do not check my work email at home.)
  • Knowing and doing the things that help me recharge—being with positive people and getting 8 hours of sleep

Staying passionate and energized is an especially important part of being a social worker because so much of my work is about making a human connection. This connection is so much more therapeutic and powerful when it is authentic. The daily role of a social worker may involve arranging a re-entry program to help the patient transition back to his or her life, developing a plan to help families manage the overwhelming stress of having a loved one in ICU, or helping families to advocate for their loved one’s needs. Sometimes it is taking a patient outside for the first time, or playing a simple game with a pediatric burn patient, and sometimes it is providing comfort in impossible situations. The job in the burn unit looks different every day, sometimes every hour.

One of the hardest aspects of the job is accepting the fact that I can’t change the circumstances that have brought a patient to the burn unit. Sometimes the situations are upsetting, disturbing, and profoundly sad. When I meet patients and families, they are often already experiencing an unimaginable amount of distress, and I know that their journey has only just begun. I try to remember that even though I cannot change the situation for the patient and family, I can still do something to help improve the present moment. I am extremely proud of the care that we provide at Lehigh Valley Health Network’s Burn Center and that helps too. No matter what circumstances have brought people to our door, I know that our burn patients and families are receiving specialized, innovative, and collaborative care in wound healing, scar management, and pain control.

One of the most helpful tools that I offer is also one of the most challenging resources to provide. Sitting with patients and families and giving them the space to express their pain, grief, anger, and sadness is difficult and not without cost. It is impossible to empathize and witness another person’s suffering and not experience some of it as well. Often patients and families don’t know whom they should “burden” with their struggle or who can handle listening to their distress. The majority of patients and families who I meet don’t want to share their deepest struggles with their loved ones because they want to avoid creating additional pain. I try to facilitate open sharing with patients and families and help them understand the importance of acknowledging what is difficult and sharing it. Sometimes when individuals do reach out about their struggles, they are met with wellintended, although sometimes not very helpful, pep talks on how to “fix” the problem. We all need people in our lives who can help us look at the positive side and who can help us solve problems, but we also need people who can let us grieve what has been lost. I help coach patients and families to validate each other’s feelings instead of always trying to solve them. When patients and families start sharing and validating their real unpolished emotions early in their recovery, it can lead to better communication throughout the journey and ultimately more emotional healing.

Everyone goes into healthcare to help heal people, but that isn’t always possible. Healthcare professionals can’t always help people in the ways we wish we were able. Sometimes the injury that brings a patient to the burn center will be terminal. Sometimes we can heal the actual burn injury but not without devastating impairments. Sometimes the burn injury is not the greatest challenge in a patient’s life; we can heal their injuries, offer them resources, and they may still return to destructive lifestyles. These situations often leave me feeling powerless and impotent. In the end, the health care system can only do so much, but I didn’t become a social worker to “only do so much.”

So why do I continue to work in a job filled with painful circumstances, raw emotions, and limits that are difficult to accept? Because over the past 10 years I’ve found that these ingredients are also part of a recipe for connection and growth. It is a privilege to walk alongside patients and families in some of their darkest times and to offer them our very best care. We witness their suffering, we encourage them through their pain, we root for them to progress, and somewhere along the way our patients and families touch our lives as much as we touch theirs. As patients recover, many of them choose to invite the burn team to continue to be a part of their lives. They send updates about growth, weddings, new babies, and graduations. But it is not just the good news that I want to hear. I am grateful when patients and families trust us enough to call when they are struggling or stuck. The burn team can be an incredible resource and it is rewarding to know that we have earned a place in the lives of our patients and their families.

Phoenix Society’s peer support program, Phoenix SOAR, (Survivors Offering Assistance in Recovery) is a resource that the burn team uses to fill the gap between the physical healing that professionals can offer new patients and families and the emotional healing that patients will face. Phoenix SOAR-trained peer supporters offer hope and understanding to patients and families from someone “who’s been there”—and that can make all the difference for new patients and families. From my own experience, I know that most patients are more interested in my “credentials” as a burn survivor than any of my degrees. Peer supporters are a walking picture of hope to not only our patients, but also our staff. They remind me that the human spirit is stronger than trauma.

It is a gift to see victims transforming into survivors. Arthur Golden, an American writer, said, “Adversity is like a strong wind. It tears away from us all but the things that cannot be torn, so that we see ourselves as we really are.” Burn injuries provide the kind of adversity that can often create opportunities for insight and transformative growth. When I first meet patients and families, they are on the first chapter of their burn stories. Their world has just been rocked and they have no idea about the burn community or the journey ahead. I know the next few chapters will be difficult, but only time will tell how the story will evolve. It is true that some stories will be tragedies, but many will not. When given the task of having to build a “new normal” life, many patients and families will choose to build a better one. Patients and families often report an increased focus on what matters, a deeper level of compassion, a greater appreciation for life, and even a new purpose. Some patients and families will recover and give back, becoming one of the great support resources that the community has to offer to new burn patients and families.

It is the face of the Phoenix SOAR volunteers, the Camp Susquehanna campers, and the examples of people triumphing over their circumstances that help me through the most difficult parts of the job. Even on the most challenging days I am grateful for the opportunity to help people transform their tragedy into a story of resilience, and that is always meaningful.

 

This story is an excerpt from The Phoenix Society’s® Burn Support Magazine, Issue 3, 2015.  Burn Support Magazine is a tri-annual publication that contains articles on the emotional, psychological, and social aspects of burn recovery.  All Rights Reserved.
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