Community Spotlight: Navigating Life with a Chronic Illness
Jenna is a 41 year-old veterinarian technician living in New Jersey. Unlike most cystic fibrosis (CF) patients who are diagnosed either at birth or in their early years of childhood, she was “late to the game” and didn’t receive a proper diagnosis until 12 years old. Jenna was dealing with a lot of medical problems leading up to her medical diagnosis – she frequently had coughing exacerbations, her fingers would turn blue for no reason, and experienced severe asthma allergy attacks. “It felt like I lived at the pediatrician’s office,” Jenna shares. The biggest concern was that she couldn’t maintain any body weight, and so her mom looked up an allergist to take a further look at Jenna’s symptoms. With one look, the allergist said Jenna either had pneumonia or CF. Shortly after, Jenna got her sweat and genetic testing done and was officially diagnosed with CF. That one doctor’s visit changed Jenna’s entire life.
“Navigating life is one thing. Navigating life with a chronic illness is a whole other challenge.” It felt like Jenna was playing catch up – since she went undiagnosed for so long, she had “12 years without any medical treatments or dietary supplements to make up for.” This period also coincided with her teenage years. She’d go through coughing exacerbations during class and would go to school with long sleeves to cover all the IV treatments she was getting in the nurse’s office. “I was so embarrassed, I would feel the need to explain my conditions to everyone.”
Conditions like CF, have an added layer of complexity because not all symptoms are visible to others, and sometimes you don’t look the part of a ‘typical patient’. CF patients may qualify for disability benefits due to their lung and pulmonary symptoms. For example, Jenna has a handicap parking placard that she uses, but rather than easing stress, it can add to the complexities of living with a condition. “The looks that I get when I park at the store or amusement park. They don’t say anything, but you can feel the judgment,” she shares. “People look at you weird. You’re too young, you don’t have a walker, you clearly aren’t a senior citizen.
It’s a narrative that Jenna battles with herself too. “When I look at myself, I look normal, but inside it’s a jumbled mess.” It’s a strange and complex illness to characterize, since it can vary so much day to day. There are days where Jenna struggles to breathe – a short walk can lead to her heart pounding or her getting wheezy. Then, there are days when Jenna “feels like [she] doesn’t have CF at all, like [she] could run a mile.”
Jenna’s CF journey has had its ups and downs. “I’d get PICC lines every couple years, and a seasonal dose of antibiotics every fall.” Her condition mainly affected her joints, and she was diagnosed with osteoarthritis. Her care team suspects that all the years playing catch up on treatments caused the steroids to affect her joints and bones. Over the years, Jenna wanted a fresh view and a different perspective for her CF care. She found a team close to where she currently resides and called to ask if they were taking new adult CF patients. When they told her yes, Jenna started crying on the phone immediately out of relief.
“My new care team has just been instrumental to my health, both treating my physical symptoms and also keeping me mentally calm.” Jenna’s doctors empathize with her condition, telling her that it’s okay to need steroids or be on antibiotics. The center just opened in 2016 and is up-to-date on the newest treatments and has their own assistance program to help patients advocate for their health insurance. For Jenna, and for most patients getting care in the US, the ongoing financial battle with health insurance has always been draining. “You fight so hard to wake up everyday, and then you also have to fight to get the medicine to just be able to breathe? I had more fight in me when I was young, but now luckily my care team fights for me.”
It was also through her new CF clinic that Jenna found Folia about 2 years ago. Jenna took part in Folia’s year-long observational study to characterize the day-to-day symptoms of CF patients. She still keeps in touch with some study participants she’s met through the program and checks in with them every so often. “As I get older, I find it so important to be able to have these open-door, light hearted conversations with the people that just get it.” Jenna expresses how refreshing it is to have an outlet to share and connect with people who are going through the same journey that she is.
All throughout Jenna’s life and diagnostic journey, her support system has been a crucial part. “My family has moved heaven and earth to get the best care for me.” In school, her friends and the staff were wonderful and understanding. At work, her coworkers show their support by running a donation drive for CF initiatives every year. Through CF study initiatives and Facebook groups, she is inspired to share her story and connect with others. No one requires Jenna to explain herself or her conditions – they empathize with her struggles, support her during her bad days, and are always willing to learn.
Jenna doesn’t let her condition define her life – “I have so much more to give!” Her work and personal life has started to even out now. She’s a recent homeowner, where she wakes up every day excited to look out the window for deers and play with her four cats. She looks forward to traveling in the near future to see more of the world and to have a “mental and spiritual reset.” Her top destinations are her happy place at Disney, back to the Bahamas to swim with the wild pigs in Exuma Bay, and to check off her life-long bucket list of seeing the Northern Lights.
