Sarah is not your average person with cystic fibrosis. In fact, it seems like a reach to even say that she is someone living with CF because she, herself, does not immediately identify in that way. For many, CF is all encompassing, but for Sarah, it is a small sliver in her being that occasionally surfaces for attention. Upon first meeting her, you may learn that she is an optimist, someone who loves a good challenge and perseveres to the end. She will even share how much she loved horseback riding, growing up, as well as skiing and all things food related like cooking or finding new restaurants. Then, she may mention that she has CF.
A Massachusetts native, Sarah grew up living with her mother and little brother who does not have CF, but he is a carrier. She did her undergrad at Bridgewater State in Management Marketing, even studied abroad in Ireland and did Irish studies! Sarah’s currently enrolled at Southern New Hampshire University and is earning her master’s in Healthcare Administration while working full time doing pharmacy services consulting for Boston Medical Center (BMC).
Her career has come full circle because BMC was where Sarah was diagnosed with cystic fibrosis via a blood test. Sarah’s mother had an inkling that her daughter may have the disease even before the official diagnosis. For Sarah, she grew up extremely aware of her condition, yet managed to live a “pretty normal” life while remaining open to others about it. One of her biggest dislikes is when others find out that she has CF and instead of asking her about it, they google it and see how scary it can be. Sarah is not one to shy away from talking about it thanks to her mother who nurtured that communication as well as her doctor.
When parents first receive notice that their child has CF, the first impression of the illness is everything. Sarah’s mother had a doctor deliver the diagnosis who encouraged her that CF has a changing landscape and to stay positive. They learned that this was the doctor’s first positive diagnosis of CF and assumed he was equally as nervous to provide the harrowing news. Her mom took the positivity piece to heart, and Sarah believes that it has immensely contributed to her well-being. “The positivity aspect is crucial,” emphasized Sarah. She partakes in surveys about mental health or discussing CF and finds it shocking when some of the options she can select say “none of my friends know my diagnosis” or “just my family knows”. Outside of Sarah’s community, friends of friends know about her CF and will respond to her saying “Oh, I’m sorry” which she uses as a teaching moment for not just those who have CF, but for all who have a chronic illness.
Unlike many, Sarah’s last overnight hospital stay was in kindergarten. Her mother diligently monitored what she was tested for growing up which potentially has contributed to her health remaining strong. While Sarah does get pulmonary exacerbations from time to time, none of her instances have required long-term hospitalization. However, she does go to the hospital every 3 months for routine PFTs, bloodwork and general CF care. Sarah even included her boyfriend on his first CF appointment with her knowing that his vision of her saying, “I’m going to the hospital” may be starkly darker than what actually occurs.
Sarah acknowledged that while her CF is mild, it has shaped her. Being only 24, many do not think about their health until later as it is generally taken for granted. Her condition has ensured that she does put the right food into her body and is aware of the implications if she does not. “CF is a positive thing in my life because it made me so appreciative of being healthy.” She tries to not compare herself to others with the same disease because it does not manifest itself the exact same in anyone. While she has listened to podcasts and seen the CF social media community, she feels that she does not have much to contribute because her CF has not impacted her physically as much mentally.
The passion that she has for healthcare seeps into her personal life. She loves her role at BMC and was initially hesitant about joining the healthcare realm because of her potential susceptibility. Since joining BMC, she has not had one infection! Her field of work means much more to her, too. Her disease makes her better at her job in specialty pharmacy. Being in that department means that she works with specialty patients which encourages her to individualize the experience for each of them as she would hope they would do for her.
While her CF journey is less traditional and more removed from the mainstream, she does feel occasionally left out due to her lack of involvement. She finds the online community to be in more dire condition than her, generally. While the comradery is there, so is the negativity which she tries to avoid since it has not proven beneficial to her health. Her CF community is her family and friends.
In the end, it is a personal journey in which she has been fortunate to only have made minimal sacrifices for relating to her CF. Even her treatments do not affect her. She finds that her biggest accomplishment is the ability to constantly challenge herself, something that many with CF do not have the luxury of doing. “It’s not an if I can do something, it’s when. I never lived my life like I was going to get sick,” which has made her healthier than ever. She remains hopeful about CF’s future as well as her own. She plans on getting married and having a family all while hoping to change people’s perspective on chronic illnesses. She will continue to fight on resiliently and live effortlessly!
Follow her journey on Instagram: @scurttt