My most exhausting days always begin with “Lauren, we are ready for you in the infusion suite.” My fellow genetic counselors may be reading this and thinking “Yes, clinic days are especially exhausting,” but I was not being called back to the infusion center to perform cancer genetic counseling appointments; I was there for my own treatment.
When I started my career in genetic counseling, I never imagined I would find myself in an infusion center due to my own medical condition, Multiple Sclerosis (MS). I heard of genetic counselors who specialized in cancer genetics meeting with patients during their treatments, but that was not my experience. I had not stepped into an infusion center until my first treatment.
The Genetic Counselor Becomes the Patient
Thinking back to my first time in the infusion center, I was overwhelmed with emotion. I was under the impression my previous form of treatment would work, but it had actually done very little to stop the progression of my MS. I had so much riding on this treatment- would it actually work? I hated needles and IVs (I know, how ironic for someone in the medical field) and in the waiting room I could feel everyone staring at me. I could tell they were trying to figure out why this seemingly healthy-looking younger person was in a cancer center waiting room. Admittedly, I was also taking in my surroundings, people watching and trying to find a friendly face.
I sat down across from a frail woman with a knit cap. We made eye contact and smiled at one another. It was as if I could hear her saying to me “I see you. I know what you are about to endure.” Sitting in a chair, quietly awaiting what would no doubt feel like the longest day of the year for me, they finally administered my pre-treatment medicines, Steroids, Saline, and of course IV Benadryl, the worst cocktail of them all. As I came in and out of my Benadryl-induced drowsiness, the treatment bag was hung, and my six hours of infusion began. I looked back around again and my friend across the aisle had drifted off to sleep; she must have given up fighting Benadryl. A few chairs over I saw a woman rising and as she passed, I heard, “Hey, you may like this magazine, it’s a little young for me,” as she handed me the newest issue of Vogue. In my steroid-induced snacking, I picked up a piece of cake in the “kitchen” area that read “Happy Birthday Frank*”. I later learned Frank was only a few chairs away from me and had brought the cake for everyone to celebrate his birthday.
Through this lonely and scary process, it felt good to know that there were others right beside me, and I was not going through this alone. It changed my perspective in the moment, but also, in my future as a genetic counselor, for the better.
Surprising Reactions from Peers
As I began to disclose my MS diagnosis to my peers, some of the reactions I received were not what I anticipated. The empathy and compassion skills that are at the core of our training as genetic counselors seemed to go to the wayside. I had peers make comments such as “Well you don’t look sick,” or many times would minimize my fatigue, saying things like “Oh yeah, I’m always SO exhausted too.”
Throughout our training, we learn how to interact with and advocate for patients with disabilities. Yet our training does not include information about how to interact with and advocate for colleagues and ourselves with disabilities and chronic conditions.
Using my Diagnosis to Spur Change
In 2020, just two percent of all genetic counselors identified as having a disability, according to the National Society of Genetic Counselors Professional Status Survey. In speaking with other genetic counselors who identify as having a chronic illness or disability, I learned that I was not alone. I am now part of a small, new working group called “Genetic Counselors with Disabilities” that allows us to share our experiences and hopefully move the needle in this area within our profession. This group is composed of Genetic Counselors and Genetic Counseling Students who identify as having disabilities, chronic illnesses and/or major health conditions. If you interested in joining our group, please contact disabilitygc@gmail.com.
Thinking about how receiving treatment in a cancer center has changed my perspective, I have taken advice from the wise Yoda, who once said “Always pass on what you have learned.” I continue to share my personal experience in the infusion suite with as many genetic counselors as possible. One key tip that I pass on to all when it comes to genetic counseling during treatments is: get your counseling in before the Benadryl hits! Like many genetic counselors, I knew the National Comprehensive Cancer Network (NCCN) management recommendations like the back of my hand, but I never understood what treatment meant physically or psychologically and more specifically what it was like in the infusion center.
I still will never be able to completely walk in the shoes of my previous patients with cancer diagnoses. I never had cancer and hope to never experience it in my lifetime, but I feel like I can connect with them on a deeper level. I see them, just like my friend in the hat saw me that first day. I am with them; sometimes in the next chair or across the aisle, battling the Benadryl drowsiness, feeling fatigued and trying to remember to celebrate the good in life.
Lauren Giannetti Sferrazza, MS, LGC is a Regional Medical Specialist in Oncology at Myriad Genetics Laboratory. Prior to joining a role in industry, Lauren served as the Senior Genetic Counselor and Manager of Genetic Counseling Services at GeneScreen Genetic Counseling Services, LLC and Interim Assistant Program Director at the Long Island University Genetic Counseling Graduate Program. She was diagnosed with Multiple Sclerosis in 2017.