Three years ago, I was hardly involved in the broad cystic fibrosis (CF) community. My only involvement with CF – aside from the fact that my sister and I have it – was some undergraduate research in a CF lab and taking part in Great Strides walks over the years. Looking back, it wasn’t that I wasn’t interested in being more involved; it was that I wasn’t sure how to get started.
To be fair, I was still finding my voice, as I had just graduated with a degree in chemistry. I never called myself a writer or knew that writing was going to be a major part of my future. At the time, I thought that I was going to become a biomedical engineer, or something else entirely.
Over the years, I have sort of fallen into my roles. The first major responsibility I had was helping to coordinate a CF walk, but to be candid, the responsibilities were minimum. It wasn’t until a year after graduating college that a member of my care team suggested I speak at a CF Family Education Day in Lexington, Kentucky. I was thrilled to even be considered.
Sure enough, I spoke, and it inspired me to get more involved. Since then, I have become more involved through working closely with the Cystic Fibrosis Foundation and Cystic Fibrosis News Today, as well as participating in committee work, writing a personal blog, and carrying out other types of advocacy work. While all of this is fulfilling, I’ve noticed that no matter how much I do, I always feel like I could be doing more.
The CF world is an interesting and dynamic one. It is a community that not long ago was dominated by parents advocating for children, a world where prominent adult advocates were somewhat rare. Due to ever-expanding social media and the fact that adults are living longer, the CF world has become more adult-dominated.
CF is rare — between 15,000 and 20,000 adults live with it in the United States. That’s not many people, and when you consider that many of us want to occupy space as professional advocates, it becomes a bottleneck.
Many people are competing for similar roles and responsibilities. I don’t even like to use the word “competing,” since it implies that we are at odds with each other. This becomes even more complicated when you consider that although living with CF absolutely makes us an expert in the disease, it’s hard to list that type of experience on a résumé.
It isn’t wrong that people with CF want to find a way to make a career out of living with it. We spend so much time dealing with it, learning everything we possibly can, and being advocates (both in our personal and professional lives) that it is only understandable that monetizing it seems like the right path. It is in this way that it can feel like there are a limited number of roles, most of which are unpaid.
To complicate things even more, it is difficult for people with chronic diseases to work full-time, since having CF often is a full-time job itself. People with rare diseases often have to go on disability, Social Security, or Medicaid. If we make too much money, we lose out on the money we receive through those social benefits, and can even be disqualified from Medicaid.
It isn’t uncommon for someone with CF to be able to work full-time for three months, only 15 hours a week for the next month, and then full-time the following month. Navigating the incredibly difficult waters of receiving social benefits in these short time frames is a Herculean task.
I want everybody with CF who desires to be a full-time, professional, paid advocate to be able to. It might feel like it, but the spaces are not actually limited. The more voices that are heard, the better for the community. Having a full spectrum of opinions in the discourse progresses conversation and allows for a more nuanced discussion.
The opportunity for people with CF to be paid for their experience in dealing with the disease, which helps alleviate the debilitating financial struggles that accompany living with CF, should not be a controversial topic. We must demand that opportunity from here on out. And we must support each other in our efforts.
Follow along with my other writings on my humbly named site, www.trelarosa.com.
Note: Cystic Fibrosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Cystic Fibrosis News Today, or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to cystic fibrosis.