Arrogance?

General 5 Minutes

I’ve been mulling over this post for a bit and bear with me while I set the stage. In the not too distant past, I was in a situation where, from my perspective, the needs of those of us with Stage IV Metastatic Breast Cancer (MBC) weren’t fully included or understood. As I was asking (and yes, being a little pushy about it) why those of us with MBC weren’t in the rooms where decisions were made that purported to serve/include the MBC community, one of the responses was: “people with MBC are arrogant.” At the time, I was focused on the answers I needed and I let it go relatively unaddressed but that comment has been percolating in the back of my mind ever since.

Let’s first look at the definition of arrogance:

1: exaggerating or disposed to exaggerate one’s own worth or importance often by an overbearing manner, eg, an arrogant official

2: showing an offensive attitude of superiority : proceeding from or characterized by arrogance

https://www.merriam-webster.com/dictionary/arrogant

If you’ve spent any time reading this blog, you probably have seen a post or two about the divide between those people diagnosed with early stage disease and those of us who are terminal/incurable. Issues related to this divide come up all too often and I’ve often had to take a step back from organizations focused on the early stage experience because there often isn’t room for differing perspectives/experiences. In so many places, those of us who are going to die from breast cancer are still the pink elephants in the room. I get it, no one really wants to be reminded of their mortality and our reality conflicts with the cure/pink/fluffy narrative embraced by so many.

Lest you think that I think all organizations focused on early stage disease dismiss the MBC experience, there are organizations doing a good job of balancing the needs of people with early and late stage breast cancer. One such organization who really listens is SurvivingBreastCancer.org. The 305PinkPack in Miami is another. I’m sure there are others, even though it’s not the norm from my personal experiences. Living Beyond Breast Cancer is yet another and I greatly appreciate all those people who have never had breast cancer themselves who work hard to learn from the various communities about what they need.

I don’t think it would be controversial to say that there is a very different thought process involved in the MBC versus early stage experience. Even the focus of treatment is different (curable intent versus palliative intent) and there is very different language used in the different communities. While health care workers use different labels at times, the significance of a Stage IV diagnosis affects everything in the lives of those of us who have received that diagnosis and those around us. I can tell pretty quickly in conversing with people (medical or otherwise) by the language they use if that person or organization has listened to and involved people with MBC or really patients at all since there is still so much patient shaming and condescending language utilized in healthcare.

Here’s the thing — those of us who have been told that breast cancer will end our lives, who have a front row seat to our friends dying every day, and will endure many incredibly debilitating treatments for the rest of our lives simply have a different sense of urgency. Our entire world is just different from those who don’t have the same diagnosis.

That front row seat to the decline and death of others foreshowing our own end from the same disaster of a disease is the most mind-altering and crippling thing I’ve ever experienced. There is no escaping the reminders and the dread and the expectation of more and worse coming. Even if we do a good job of compartmentalizing (and I’m pretty much an Olympian compartmentalizer now), the reality of what is happening to us and those we love is inescapable. Even if we keep ourselves apart from the MBC community, regular scans keeps us informed that our mortality is tenuous. Even if we do all the gratitude things and meditate and focus on hope, and focus on the present, and focus on research and what we can do and what we can control and talk and express and cry, etc., eventually we’re all pulled back to the truth, that there is no cure, that MBC will be the death of us and so many amazing people around us.

Since my de novo MBC diagnosis in 2017, I’ve lost count of the number of people I’ve deeply loved who have died from the disease. I’ve lost count of the number of funerals I’ve attended, both online and in person. I’ve lost count of the number of family members I’ve interacted with after dear friends have died. I’d estimate that a full 25% of the social media accounts I’m connected with are of people who have died. And I can’t bring myself to unfriend/unfollow them.

I wish I could go back to that conversation and when I was told that people with MBC are arrogant respond with something along these lines: “if you think about triaging people with breast cancer, I and those people I love with MBC are the ones getting the black or red toe tags signifying death and unlikely to survive. It’s not arrogance that makes us pushy, it’s desperation to live. We don’t think we’re better or more important, it’s that we NEED the most help/research/medication options/answers, etc., now. Our time is running out.”

No person is perfect, no organization is perfect but to label those of us desperate for more time, more treatment, more research, as arrogant is missing the boat completely. In my own “n” of one opinion, of course. To label a group of people who are affected completely differently by breast cancer as arrogant because we view the world and research and cancer in general through that lens is in essence the height of arrogance. Again, in my own individual opinion.

Here’s the takeaway that I want each of you to hear — some of us with MBC get pushy because so few people really listen and it’s truly life or death to us and our community. If you as a person or as an organization frame this desperation to live as arrogance, then that’s a serious empathy problem. And if you are that person or organization who thinks people in the MBC community are arrogant, then maybe that reveals blind spots that can only be cured by inviting and recruiting and urging those of us in the MBC community to come to the table to teach you what it’s like to live and love with a terminal illness. We struggle every single day with that knowledge, that reality, and until someone has walked in those shoes, you simply don’t know what you don’t know.

When we say “nothing for us without us,” it’s because we know what we thought before we knew MBC would end our lives and now we know better. That’s not arrogance, that’s just reality; denying our reality doesn’t make it disappear. Denying us a seat at the table where decisions are made means missing out, for everyone. I don’t know any other remedy for this type of ignorance other than education through presence and reminders from those of us who actually do know what it’s like to struggle to live while dying.

Would love to hear suggestions/thoughts!! (And I do feel better getting all of this out on virtual paper).

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Published by Abigail Johnston

I'm a daughter, a wife, a mother, and I've been living with Stage IV Metastatic Breast Cancer since March, 2017. All of the words I publish are my own.

Published

33 thoughts on “Arrogance?”

  1. Well said, and so sad that you even had to say it. May your words encourage/affirm or refine/challenge hearts, minds and attitudes as needed by the reader. You’re in my heart and prayers. 🙏❤️🙏

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  2. Oh Abigail! I actually gasped out loud reading your first paragraph: “People with MBC are ARROGANT!?!” How can it be possible that somebody/anybody could say that out loud?

    As you write: “I don’t know any other remedy for this type of ignorance other than education through presence and reminders from those of us who actually do know what it’s like to struggle to live while dying…” Thank you for confirming that important reminder.

    I’m still shaking my head. . .

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  3. I can hear your justified frustration and disappointment. You are a remarkable writer with an uncanny ability to convince others of your point. I enjoy your content, and you speak from my heart, or so it feels. I can feel your voice through a writer’s lens. It’s not arrogant to yearn to live and advocate for advanced care, treatment, or anything you need!

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  4. Abigail!!! I am both shocked and not shocked at this cruel, offensive, and damaging comment you received. People with MBC are arrogant????? The things people say… Arggggg. I am so sorry you were on the receiving end of this, and I admire the grace and level-headedness you bring to this fantastic post. Thank you 🥰

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  5. Whenever I have the attention of people who want to know about my diagnosis, I tend to rattle on and on. I admit I come off as arrogant. It’s a natural thing that happens when I’m defending mbc ,or anything else I’m passionate about. I can see the look on the faces of my siblings, nurses , friends etc when it happens. They’re listening!

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  6. I feel so sad about people saying things like that, it such a shut down, because they don’t know. And like you ask… How do you speak the unwanted truth so that they become aware. Blind spot is spot on!

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  7. Ugh, I’m both sorry you had to deal with this and grateful for sharing it. It’s I’ve been living in cancer-land in some way since 2009 and never heard that label. It’s quite sad that someone working in the space of breast cancer advocacy and support thinks this way. It is yet one more example where those of us living with MBC have to help others navigate our diagnosis. It’s exhausting, but I’m preaching to the choir here. Thanks for sharing your experience.

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    1. Exhausting is right!! I do tend to be a bit of a lighting rod since I tend to be a little more direct and ask the questions loudly. I’m so glad you haven’t had this particular brand of pushback. Love to you!

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  8. You say it all so well ! But I am sad and shocked that you had to hear such a painful comment. Since my recent diagnosis, I’ve been regularly hesitating to bring up my MBC diagnosis because I don’t want to bug people with this, I don’t want to bring up MBC all the time, I don’t want it to always be about MBC, even though it is in my head 24/7. But your post makes me want to be more assertive and vocal about it. Thank you for your wisdom. I love this sentence: “It’s not arrogance that makes us pushy … it’s desperation to live”. Hell yes.

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    1. Appreciate you reading and commenting. We all have to find our own unique way of handling the information about MBC generally and individually. I do tend to be more direct and forthright than many others. You will find your own best way of handling how you present yourself and your own diagnosis to the world. Love and hugs to you.

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  10. You are a better woman than I. If I could go back in that situation, my answer would be laced with profanity, and possibly involve an arrestable offense. You are correct that these people have zero empathy. I’m so very sorry. As if you don’t have enough to contend with. 💔

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    1. You know how hard it is to respond coherently in the moment and it’s very possible that if I’d allowed myself to connect more with my emotions in the moment that I’d responded with profanity too. Too many people don’t understand how deeply personal these issues are when we are literally facing death and how little social niceties matter.

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  11. Thank you Abigail for addressing this complicated topic. I’m not at all surprised or shocked by the term “arrogant” having lived with MBC for the past 7 years. Of course we can seem aggressive, abrasive and overbearing at times. What about the fact that we are hormone-deprived, sleep-deprived and therefore mentally/physically-deprived from the intense toll that metastatic breast cancer has taken on our lives? I would argue that the better term would be that “people with MBC are passionate”. Arrogance is self centered and focused on the ego at its core. Passion is about our core beliefs and greater purpose. I believe that most of us with MBC have a higher calling than ourselves and that calling is to help find an end to this disease while carrying each other along the way.

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  12. I know a lot of MBC folks and not one of them would I classify as arrogant. Naturally, Stage 4 patients want recognition for their plight and, importantly, that more research funds go towards drugs that will extend survival.

    I’m also well aware, that MBC is a death sentence and I’ve had good friends die from it. My mom died aged 40 from breast cancer, leaving behind four young sons. She truely never had a chance because in 1962 there were only rudimentary treatment options, basically experimental radiation and savage surgery. Chemo was not a thing, neither were hormone blockers. What I’m grateful for is the advances we see every year in treatments for all cancers and other diseases. The good news is our lives are being extended well beyond the expectations of those early patients.

    Personally, living with two non-metastatic cancers (breast and prostate), and having survived two strokes, I have no expectation that I’ll live for a long time. This puts me in the same boat as my MBC pals. And, what I learned from my strokes is that a bigger one will finish me off in a flash. This makes me appreciate my cancers in that I know there are many potential treatments that will most likely keep me alive for a good while, possibly years should one of my cancers advances to Stage 4.

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  13. You are right—you have a right to be pushy when so few medical people (or insurance people) will listen to you. We do, don’t we, think of a better way of saying something after the fact? But rejected communication is a form of arrogance in itself.

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  14. Pingback: “Arrogance-?”, a No Half Measures reblog | By the Mighty Mumford

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