CF Awareness is Everyday not just May

Posted by: 
Gina Ruiz

As the saying goes, “April showers bring May flowers." I cannot believe it is already May, and I am once again thrilled to celebrate Cystic Fibrosis Awareness month. I believe that every year is an opportunity to share with the world what exactly Cystic Fibrosis is, but now, more importantly, when our community is still very much affected by the pandemic. When April quickly comes to an end, and May creeps up, I start to think of all the new information I want to include on my social media platforms. I like to think of it as the sandwich theory; a practice I was taught when studying for my bachelors in Early Childhood Education. The sandwich theory is a way to inform a parent/someone of importance, news that may not be easy to hear. You start with a positive, address what needs to be worked on (perhaps perceived as a negative), and end with another positive. When I gather the information and realities that are faced in my everyday life with CF, there are endless points I want to share with the world, but the harsh fact is, it's not always easy to communicate so freely.

During this past year, the pandemic really hit the CF community in ways we were all somewhat accustomed to but not nearly mentally prepared for. I speak for myself when I say I was not a stranger to using a mask prior to the state mandates, for I would always use a mask for clinic visits and during hospital stays. Maintaining six feet apart from other patients was drilled into my mind to avoid cross contamination, and of course practicing good hygiene is essential when you’re immunocompromised. What I wasn’t prepared for was the immense strain it took on my mental health, thus also affecting my physical health. I learned quickly that the world will continue to move on, regardless of high risk patients or those who are disabled. We cannot get back to the “normalcy” that the general public can enjoy. Little luxuries such as indoor or outdoor dining, going to clubs, or joining the gym were all activities that others returned to quicker than those with a chronic illness. While I watched others enjoy from behind my iphone screen, I found myself in an immense depression. Seeing those who were not immunocompromised moving about freely, while I kept up with covid death rates and contamination rates throughout my state was completely overwhelming. I found myself trying to remind everyone I could to stay home, wear a mask, wash their hands, and to be kind.

Fast forward almost a year later, and the same awareness applies. Throughout one whole year of surviving an ongoing pandemic, I decided to use a resource that was presented to me by my social worker on my CF team. It is a research therapy session to study how those with CF cope with mental health, and I couldn’t find a better time than now to participate. When people hear about CF Awareness they probably suspect I will be sharing data, or the basic information of my disease, but what I really wanted to highlight this year were the effects mental health can play on chronic illness. It really takes a village to keep a CF patient in top shape, but when the patient slows down it's really hard to find motivation. Especially when you are reminded that you are high risk almost everyday. As an adult with CF I believe it is crucial to highlight these struggles. I, and many other patients, find ourselves in a stage of life where maybe we aren’t achieving the same “time stamps” as our peers such as getting married, having children, achieving a career, traveling, whatever the case may be, all related to our CF. I recognize that as an adult with a chronic illness my life will never be at the same pace as my peers, and I have to constantly remind myself that it's okay. However, during a pandemic, everything seemed to freeze. For once, the rest of the world is on pause with me, and I can relax in the moment.

What I find the most challenging aspect of spreading awareness about CF is talking about the realities of mental health and its effects on me. I am in this love/hate relationship with having an invisible illness; the positive is no one would suspect I have a chronic illness by looking at me, which allows me to speak so easily about having one. The downside is because I’m not constantly oxygen dependent, or in the hospital 24/7 the view may be that I am not struggling, or I am not struggling as hard as I perceive to be because I’m not in a hospital bed. It is never easy to open up about a debilitating disease, especially one with no cure, but I know I cannot stay silent when there are lives on the line, including my own. That is what I find most important about CF Awareness month, now more than ever. You can never lose when you educate others, and in the process you also learn about other people's narratives, maybe some you never expected. In the end, I think that's a beautiful trade. If you’re reading this, remember to wash your hands and to keep eachother safe. Happy CF Awareness Month!


Help Others Live STRONGER and LONGER-




Gina Ruiz is a 26-year-old patient (Turning 27 in August!) living with cepacia and CFRD. She was diagnosed with Cystic Fibrosis at 6 months old in Colombia, South America and immigrated here for a chance at life. She writes blogs for the CF Foundation and enjoys cruising in her 1975 Mercedes convertible, beach days, and rollerskating. She also loves coffee and handling CF day by day. 





***Views expressed in the CFLF Blog are those of the bloggers themselves and not necessarily of the Cystic Fibrosis Lifestyle Foundation*** 


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