Five things we need to stop calling ourselves and why.
You know what the labels are: Patient. CFer. Cystic. Fibro/Cyster. Sufferer. It makes me cringe just to write them! I strongly dislike these words, and believe that our community would be better off if they were never said again. I see them used in blogs, facebook posts, research papers, community forums, and news articles. I see them used by people with CF, parents of children with CF, and by well-meaning family members, friends, researchers, clinicians, journalists, and fundraisers. These terms are usually used without malice – as terms of endearment, in reference to the very real fact that an individual or group of individuals has a diagnosis of Cystic Fibrosis, as part of an effort to build community and solidarity. But they are terrible. All of them. Why? All of these labels diminish our personhood and human dignity by magnifying the fact that we have cystic fibrosis and defining us by it. I am not my diagnosis. I am a spouse, a son, a sibling, an athlete, an attorney, and a person who happens to have CF.
The first one is easy. I’m not a patient. I’m a person. The only time the label of patient might apply is when I am in an exam room with my clinical care team, or on a table having a procedure performed on me that I consented to. It should never be used to describe who I am in any other context. Period. Even then within the exam room, I still don’t like the label. It is loaded with the not-so-distant history of paternalistic medicine that said “you are only a patient, I am a Doctor, and this is what I’m prescribing you, this is what is best for you, and this is what you are going to do.” That might work for a flu diagnosis that requires Tamiflu and three days of bed rest, but it’s a terrible model for the provision of life-long chronic care.
I am a partner in my own health care, I am the expert on my very specific case of CF, and I am the leader of my CF Care team. I’ve earned these titles and that role, and I have earned the respect and trust of my CF Care team when it comes to medical decision making. Does this label of “Patient” matter? I firmly believe that it does. In a chronic, lifelong condition like cystic fibrosis, with its massive treatment burden, survival requires excellent self-care. Survival requires adherence to treatment, and adherence to treatment requires me to buy in to every aspect of my daily regimen. That means more than passively nodding along in clinic and giving easy affirmative answers when prompted by a physician. It means questioning and understanding every single piece of what our CF care teams have to offer us in terms of treatment options. It means weighing the risks and benefits of dozens of choices – figuring out what type of airway clearance is most manageable and beneficial? Which combinations of antibiotics will work given your sputum cultures? When to have a course of IV antibiotics? What is your target weight – and how to achieve it? The list goes on. As all of us know, many of these questions do not have easy, “right” answers, and many can conflict with other parts of our CF care and life. The choice to have a course of IVs may impact our weight, may impact our ability to stay on course in high school, college, or beyond, while delaying the cleanout may have extremely negative long term impacts on our lung health. These are serious choices with serious ramifications to my personal health and life – not the health of my Doctor, or RT, or nutritionist, and they are MY decisions. I don’t need any more motivation than that to make sure that my decision is not only well informed by the resources of my CF care team, but also reflects my personal knowledge of living with CF, as well as my preferences, values, and priorities. This is what “personalized medicine” is about. Gene specific therapies might be individualized medicine, but without the active role of people living with CF, it isn’t personal. I find it difficult to reduce that role down to the word “patient.” I’m a partner – and as a result I am healthier than I otherwise would be, and my CF care team is more effective.
The second group of labels: “CFer”, “Cystic,” “Fibro/Cyster” are harder to deal with, because so many people with CF self-identify by them. Does that make them OK? Maybe. Do some people believe that they are positive, community oriented words help people with CF relate to each other? Yes, and maybe they are right. So, what’s my problem? All of these labels reduce us to our CF diagnosis. They might be a little clever or cute, and even well-intended, but they all put the fact that we have CF ahead of the fact that we are people. When I look in the mirror, I don’t see CF. I see my abilities, my accomplishments, my personal relationships, and my future goals and dreams. All of these things are what define who I am, and are what motivate my adherence to care – which reduces the impact of CF on my life. Pushing CF in front of all those things doesn’t help me, and is isolating from other people who don’t have CF. I get the desire to feel a connection to the larger CF community, but that doesn’t mean can’t think a little harder about how we refer to ourselves within that community. We are people with CF. Women with CF. Men with CF. Parents of Children with CF. We are not CF.
Lastly, CF Sufferer. Often used by well-meaning journalists or fundraisers to garner sympathy, and worse, pity. Don’t. Just don’t. My life, and most of the life experiences of people with CF I know are not defined by the bad moments that living with CF can include. Our lives should be defined by moments of grace, empathy, love, wonder, and awe, which can be very much enhanced by the appreciation of life that can flow from living with CF. If you are suffering all the time, you aren’t living. Life with CF can be unpleasant. At times, life with CF can be incredibly physically and emotionally painful. Contain the bad moments and do not let them overflow into the good. CF and the pain it can cause is not a divider between us and the rest of humanity, it unites us with the common experience of those who struggle to find happiness in an imperfect world. Don’t call me a sufferer, and keep your pity.
Maybe this post is just a giant over-reaction, but when I read about the percentage of people with cystic fibrosis who are also dealing with startling high rates of anxiety and depression, I don’t think I’m that far off. After 35 years of living with CF, I firmly believe that how we define ourselves, and how accepting we are of the labels others use to describe us matters. The act of passively ignoring these labels erodes the rest of who we are as people, and that erosion makes it more difficult to accept the challenges of living with CF and meeting them. Let’s not make it harder than it has to be. We are people. CF might be a part of our lives, but we don’t have to let it be the thing that defines us, and that starts with the language we use. Language is powerful. Use it to help create a mindset that looks beyond a diagnosis and empowers you.