“For, indeed, in the social jungle of human existence there is no feeling of being alive without a sense of identity.”
As Erik Erikson has so rightly typified, knowing “who you are” and “what you are about” helps us make sense of our personhood. Identity helps us carve out a niche in society by defining how we think about ourselves and how we relate to others. The exploration of identity does not occur in a vacuum, and the influence of external factors and persons play an important role in our identity development. This is particularly salient for those young people who provide unpaid care, assistance, and support for their family members with health care needs.
In the blink of an eye, my older brother and I became two of the nearly seven million child and young adult caregivers in the United States. When I was eleven years old, my mother acquired a physical disability as a result of a spinal surgery gone horribly wrong. Only the year before, my mother had run a full marathon in Alaska, her body completely capable of pushing itself to the limit. After the surgery, she became a shadow of her former self. She was unable to bathe without assistance and could not lift her arms to feed herself without tremors of pain racking her entire body.
My brother, nineteen years old at the time, dropped out of college to begin caring for my mother and me. From that point forward, he made every decision carefully considering the possible ramifications for our family. Attending his college two hours away? No longer possible; he needed to be home to help our mother to the bathroom. Going out with his friends on the weekends? Not a chance; that money needed to be used to pay our mortgage. My brother lost the friendship of his peers, the earning potential dependent upon a college degree, and all of his free time. Caregiving wasn’t simply a part of his life; it defined him. Those precious young adulthood years most spend finding their identities were stolen from him. He’d say that he was uncertain of his identity, outside of being “caregiver”.
My life, too, changed forever. The constant worry over my mother’s health and our finances coupled with the tormenting fear of “what-if?” plagued my thoughts. I’d pray every night for God to take away my mother’s pain and give it to me instead. Every morning, I’d wake up, and when I found that I could freely move my limbs around, I’d realize my prayer went unanswered.
Besides the non-stop anxiety, our family’s experience left its mark on me in other ways. I knew what it was like to hide from your family that you were bullied on the first day of seventh grade (and every day thereafter) because you knew there was enough going on at home and didn’t want to add any more stress. I chose to keep quiet because my mother would fight for me. The last thing we needed was my mother hauling herself up to my school in a neck brace, threatening to sue anyone who laid a hand on her child. I learned to hide my emotions and say everything was fine and good, even if it wasn’t. I fault no one for this. My feelings are my own, and I take ownership for whatever I’ve chosen to share or not share over the years. I learned to tell people that I’m a private person and much better at listening to others’ problems than divulging my own.
I remember when I did decide to share what was going on in my life. During my junior year of college; a trusted friend had remarked, “Feylyn, you don’t seem like yourself lately.” I watched her eyes widen in shock as I told her that my family was about to lose our home and that my mother was currently lying in a hospital bed— no more than two football fields away from where we stood — with excruciating pain from back spasms. My sweet friend was overwhelmed, and so was I. She didn’t know what to say, and I didn’t either. I decided then that I wouldn’t say anything to my peers anymore. I’d choose more wisely next time. What kind of person did that make me? Quiet, introspective, and a good listener, certainly. Always available to hear the problems of others and respond empathetically. I enjoyed it and was good at it. I soon found that I could put those good qualities to use in my chosen career as a therapist.
My life experiences reinforced my listening skills, cultivated empathy, and put me on a career path that would allow me to use both on a daily basis. The reasons why I became a therapist are many, but I’d be lying to myself if I thought that caregiving played a trivial role. Indeed, my experience in navigating my identity in the midst of young adulthood may not come as a surprise. Research on identity development has shown that the question of identity for young adults may be answered through their navigation of education, career choices, and romantic partnerships. Furthermore, previous research in the United Kingdom has shown that the experience of providing care for a family member may be a determining factor in the education and career choices for some young adult caregivers. My ongoing qualitative research with young adult caregivers in the US has shown complementary initial findings; the young adult caregivers overwhelmingly report that their educational and career path are significantly influenced by their caregiving roles. Their family experiences may lead them to choose jobs and careers in which they can utilize the skills gained from caregiving, e.g., money management, organization, and a caring spirit. They may also choose careers that put them as far away from caregiving as possible; they may seek lives away from the caregiving duties that they have had forced upon them. Still, others may choose hobbies, seek volunteer activities, and form fashion and music preferences influenced by their caregiving experiences.
In addition to educational and career choices, my research seeks to understand the deeper, internal impacts upon identity development for young adult caregivers. The influence of caregiving upon a young adult’s identity is not inherently problematic. It does, however, beg consideration. I assert that it’s important to consider how young adult caregivers have navigated major life choices and the question of who they are. Were they the authors of their own lives? Did they feel free to pursue their dreams? Do they feel like they missed out on something, and did some options feel unavailable to them? What and who helped shape them into the persons they are today? By exploring these questions, we are left with a better understanding of the role caregiving plays in young adult lives in both adolescence and adulthood.
Feylyn Lewis is a PhD student in Social Work at the Institute of Applied Social Studies at the University of Birmingham in England. A native of Hendersonville, Tennessee and graduate of Vanderbilt University, she is a nationally certified mental health counselor. Her doctoral research focuses on the identity development of young adult caregivers living in the United Kingdom and United States. During Feylyn’s childhood, her older brother was a caregiver for her and their mother who has a physical disability. This experience motivated Feylyn to pursue research and advocacy work for young adult caregivers; thus, she came to England from the United States in 2013 to further study under the expertise of Professor Saul Becker, world-renowned researcher on young people with caring responsibilities. Feylyn’s research with young adult caregivers in the United States is currently ongoing, and she invites 18-25 year old caregivers to contact her if they are interested in participating in her research study. You may learn more about her research by watching the following video: https://youtu.be/Pcte_hA12LI
 Erikson, E. H. (1968). Identity: Youth and crisis. New York: Norton.
 Levine, C., Hunt, G. G., Halper, D., Hart, A. Y., Lautz, J., & Gould, D. A. (2005). Young adult caregivers: A first look at an unstudied population. American Journal of Public Health, 95(11).
 Hunt, G., Levine, C. & Naiditch, L. (2005). Young caregivers in the U.S.: Findings from a national survey. Bethesda, MD: National Alliance on Family Caregiving [in collaboration with the United Hospital Fund].
 Arnett, J. J. (2000). Emerging adulthood: A theory of development from the late teens through the twenties. American Psychologist, 55, 469-480.
 Becker, F. and Becker, S. (2008) Young adult carers in the UK: experiences, needs and services for carers aged 16-24. London: The Princess Royal Trust for Carers.
An American Doctoral Researcher at the University of Birmingham in England, Caregiver Advocate, Mental Health Counselor