Don’t Call Me That – Language is Power. Guest blog by Chris Kvam, Esq.

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.

11 thoughts on “Don’t Call Me That – Language is Power. Guest blog by Chris Kvam, Esq.”

  1. I completely agree with you. Thanks for writing that out. I makes me angry too. I mean with cancer, you wouldn’t say, the cancer-man (expect for x-files :P) or the cancer-girls. or something similar, would you? Or lets take something else… like MS or diabetes. try it out in your head. It sounds ridiculous imo. I don’t think you’re overreacting, it’s more like it’s time someone said something.

  2. Here, here! You are so correct. I have lived more than twice as long as you and have chafed at these labels the entire time. I refuse to be defined by a disease. I am a person who has CF, it doesn’t have me. For more than 25 years CF Roundtable has worked to get people to understand that CF isn’t just for babies and we are more than our disease.
    We are not lab specimens. Don’t put labels on us.

  3. Well said! CF does not define who I am. Lungs are just one part of my body! I’m 69 and still living my life to the fullest.

  4. While I respect your opinion, I must say I LOVE the word “Cyster”. It describes my dearest friends who are much more like sisters than friends and who would never have come into my life if we both did not have CF. To me this word is not a label but a description of my relationship with some amazing women.

    1. Thanks for your thoughts. I do not let CF define who I am and I make great efforts to not let CF rule my life, but I also like having “Cysters.” It is a term of endearment for me and it helps me have a bond with other women who go through the same struggles I do.

  5. Absolutely brilliant. I felt this way ever since the very first doctor called my baby girl a Cystic. Can you suggest a positive polite way to correct people when they call her that? Especially in the medical setting? Thanks so much. And thanks for sharing this perspective. I almost felt like I should ignore my feelings about this because even other people with CF call themselves these names. Refreshing and relieving. Hear hear.

  6. I must say I am guilty of using the term ‘patient’. It was never my intent to label you or anyone else. Since I know that it is upsetting to some I will use the term ‘member’.

  7. I hear what you’re saying and agree with the power of language and what we label things. See .
    At the same time, I am also called a woman, a sister, a daughter, a student, a teacher, the list goes on and on. I do not take offense to these things as I recognize that they are used to describe what I am in relation to that particular situation I am in. They are more specific descriptors than human or living creature or something more inclusive of my whole being.
    I feel like I am a person living my life with CF, but also I am a person living life with a whole lot more than that to both celebrate and deal with.
    There are certain things I might like to be called- Kori, student, teacher, wonderful, beautiful, sister, a woman, cyster, daughter, someone living life, someone living her life with CF, someone living her life with love…the list goes on.

    The thing is, so much of that is dependent on context. I might for example, not mind and even appreciate being called a woman if it’s being said as a compliment or plain descriptor. I might not appreciate that same label if someone is using it condescendingly, like, “What do you know, you’re a woman?” The same statement even depending on my mood and the context might call for either agreement or correction. “You are a woman”. I might agree as opposed to I am a man. Or I might qualify with descriptors, “Yes, I am a grown woman”. Or I might say, “Actually, I am a human.”
    I could be called a teacher in a certain instance. That does not mean that I am now not also a student in another, or that I loose the ability to be seen as a student. I think it would be very sad if we start seeing teachers only as teachers, dangerous even. They are also humans. Labels only have as much power as we give them. Even our most powerful identifier, our names, do not describe all of who we are and can be changed if we find the need to do so. It does not mean the first one is necessarily bad or harmful. Unless it is, then we can point to that and choose differently.

    My point is, I think the context is important and who gets to choose the “right” label for the right situation? Well, I guess those in the situation.

    Honestly, being called a CFer isn’t my favorite, and depending on the situation I might correct with a descriptor that I think is better for me, such as “I am actually someone who is living a whole big life who happens to have CF as one aspect.” However, I’m not really offended. I don’t cringe, I just see it as an opportunity to say out loud who I feel I am in that moment. Which will change.

    I don’t think that person is harming the mentality of all people who are living with CF by saying so, but I do see how that could reinforce the self image of someone who does solely identify with CF and so see how that label could be harmful in such a situation and thus not a good choice. I do think it’s important for medical staff for example, to remember the person in the room may have a condition, but they are also a whole person.

    On the other hand, I actually like it when one of the women I know and love, who also lives her life with CF, calls me her cyster. It’s a term that recognizes our “sisterhood” through living a particular type of experience that others do not share. Much like two young woman who grow up in one family call themselves “sisters”.
    Neither term implies that the individuals are the same, or that that’s all they are is sisters and nothing else in the world, it simply points to their shared bond and experience. Which by the way, will not be the same for any two “sisters” or “cysters”.
    I also have friends who call themselves Fibros to describe a shared bond.

    In the end, we are all some sort of life force having our own unique experiences, some similarities, some diffferences. There are descriptors that can be helpful to convey certain aspects of us in certain situations.

    All of us who are living our lives, with CF or anything else are also more than just that experience.
    It is important to educate those around you as to how you would like to be identified if the term they are using does not work for you. It’s also important to look at and continue to question anything that might peg you into one little hole of identification that you might not fit into.
    At the same time I would caution against saying any certain label is harmful for everyone in a particular population.

    Good point in that labeling is powerful Chris.
    It’s an opportunity to think about who we are in a given moment in time.

    If we don’t like what we’re being called it may be important to share that and educate the person who has called you something that you don’t identify with in that moment.

    And now, I am a woman who is incredibly behind her med schedule and took way too long to respond to this blog entry .

  8. I completely agree with you, Chris. I cringe whenever I hear anyone in the medical field use the word “cystic” to describe a person. When I was in medical school and residency, this was common terminology and I know it still is. Recently, a pulmonologist told me I had a “great looking mri for a cystic of my age.” What a compliment!!!

  9. I agree that labels can be very powerful, but I also agree with Kori; that they are only as powerful as we make them. I’m personally not offended by any of the labels you mention (though not a big fan of “cystic”), but can easily see how someone else could be. I also happen to not be offended by much of anything, which is not always a good thing. I think that the best you can do sometimes is advocate for yourself and educate those around you (be it medical professionals, family and friends, or other people living with CF) as to what your feelings and preferences are regarding those labels. I do not think it’s necessarily true that all labels are harmful to everyone.
    I have a relatively recent awareness to the terms “cyster” and “fibro,” and it did feel weird when I first started seeing them. Now I get a little warm fuzzy, because it does give me a sense of community and very special relationship with people who I would otherwise have no relationship whatsoever (I feel like that’s really poor grammar, but hopefully you get my point) 🙂

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