Language can have a powerful impact on the patient experience and our perspectives on illness. Claudia Cometa, author, pharmacist, and founder at Peace Advocacy Group explains why to Jim Cagliostro. 

 

Episode Introduction

Claudia explains how her passion for advocacy arose following her father’s illness, and how moving away from images of a cancer ‘’battle’’  helps us to see our bodies as allies, rather than adversaries. She also highlights the barrier to healing created by the language of competition, how she found inspiration from the Princess of Wales, and why no patient should feel like they are a burden.        

      

Show Topics

 

• ‘’How is this the patient experience?’’

• Seeing our bodies as allies, not adversaries

• Moving away from an ‘’illness identity’’

• Overcoming the language of competition 

• Creating a more peaceful patient experience

• Leadership tip: Twofold knowing 

 

 

02:44 ‘’How is this the patient experience?’’

Claudia said it was her father’s cancer diagnosis that prompted a heart-centered decision towards advocacy. 

‘’…my father was diagnosed with cancer in 2016, and I quickly was in crisis resolution mode. I was on the other side of the equation, jumped headfirst into that side as it just made sense. I was the only one in my family who was medically trained. And so I saw the other side of the system for the first time of any significance and was mortified like, "How is this the patient experience? How did I, number one, not know this was the patient experience and how am I just now coming to grips with what is happening on the other side of where I'm working?" And it was very discouraging. Obviously helping my father, you want the best care for your loved ones. And so to not be able to get that, to be dismissed, I ended up firing several hospital systems. It was a really, really negative experience. And that was with my oversight. That was with my deep understanding of the medical system, how to navigate it. …. And so I vowed at that point that I have to do for others what I did for him. There's just no other way around it. …. It was a feeling that I've never felt before. It was a heart-centered decision-making I had never done before…’’

 

06:32 Seeing our bodies as allies not adversaries 

Claudia said using ‘’battle’’ language around cancer makes it sound like our bodies are the enemy. 

‘’… if I go back to when I was helping my dad, I hadn't really come to this realization yet. And so I was the daughter who was posting on social media, "We're going to fight this, cancer chose the wrong girl." I just fell into the trap of what sounded like what I'm supposed to say. Like, "Yeah, I'm going to win this battle." And it wasn't until years later, well beyond when he passed away that I really started to question, some of this being part of my spiritual growth too and personal development, but how are those words really helping us? If we are really talking about whether it's cancer or another illness as if we're going into battle, and ultimately, we're going into battle with our own body. So if we are going into battle, there has to be a winner and a loser. It's no different from any war that we're used to in history class or any wars that happen right now. There's going to be somebody who's going to come out victorious and somebody who's going to be a loser. Is that the approach we have to take? Is it just that that's what we have heard, that's what's been modeled for us, that's what society has taught us? And so it feels good. It feels like, "Yeah, we're going to fight this." And so we have this internal, "Yeah, maybe this will fire me up if I feel like I'm going to go into battle and I'm going to put on my boxing gloves and I'm going to win this thing." Is there a better approach? Can we start to shift that into, instead of being at war or an adversary to our bodies or our bodies being the enemy, can we actually come back to it being an ally? So is it possible that the symptoms that we're experiencing, whether it's cancer or literally anything else, anything else that is a symptom we are experiencing, can that be seen as a message from our body? Because our body obviously isn't able to speak a language.’’

 

11:04 Moving away from an’’ illness identity’’

Claudia said a ‘’mind over medicine’’ approach can help to change the language around cancer. 

‘’So number one is, okay, maybe a second opinion wouldn't be cancer. I don't know. But then there's the second part of this deep-seated illness identity of if I move through my life with the statement, "I have cancer," running through my mind at all times, then I am acting like what I think a cancer patient is. And so it becomes a deep-seated shift in our identity. And I saw it with my dad. I wasn't able to process it till later. But it's like, "Okay, well, now I'm that person." And this is actually mind over medicine, it's actually a thing. It's actually a book. It's a fantastic book. It's a well-researched concept. In fact, there's studies showing that women with breast cancer, if they are told they're getting chemotherapy, even if they're not, so they're told they're getting chemotherapy, they actually get placebo, they lose their hair because they're so convinced of the identity that comes with chemotherapy like, "Okay, when I get chemo, I lose my hair." So there was no pharmacologic or physiologic reason for them to lose their hair, other than the deep-seated identity that that gave them. So I really do think that our language around illness and how we process the identity around our illness is so important. It doesn't mean it's easy because you're swimming upstream. The easy societal swim on the lazy river is just do what everybody else is doing. Right? And so how do we start to shift this paradigm? And it's hard when nobody else around you is. And so it takes each of us to start making that shift.‘’

 

15:50 Overcoming the language of competition  

Claudia said our cultural language can block out messages from our bodies.  

‘’…..there is an element in our society of competition, and there are some settings where competition makes complete sense and sports is one of them. That makes sense. I don't really believe in participation trophies. When you are playing a sport, it's competition. It just is what it is, but that has permeated... The concept of competition has permeated our society so far beyond sports and so far beyond the arenas where it needs to be, and sickness isn't immune from that.

We feel like we're always fighting something, we're always competing with something. So if we're in business, we're competing with the business owner who does the same thing we do. And even in social dynamics and high school, it's like we're always competing. We want attention. We want social media. And so it's almost like in every aspect of our lives, there's this trying to win something, win attention. And it's rare that we just are okay in what's happening and able to quiet ourselves down and evaluate what's happening and learn from it. It's like we just want to keep getting louder, like, "Now we're going to be the louder one. So my body's getting loud, I can be louder." And it is not to anybody's fault. I fell into this trap with my dad. So I think that when we start to shift in... Perspective is the perfect word, is when we start to shift our perspective that what if your body really is doing everything it can possibly do to share a message with you that could change this? That it's basically saying, "Look..." The body has an innate amazing resiliency and ability to heal, but it can't do that. …… our bodies also cannot undergo the healing processes that it so divinely knows how to do if we don't give it what it needs. And so can we just get to a point where it's like, "Okay, I hear you body. What is it that is lacking here?" Maybe it's something tangible like a shift in food, movement. Maybe it's something intangible like stress. Maybe it's connecting to your intuition, maybe it's loneliness. Maybe you've been isolated. We saw this obviously a lot in COVID.’’

 

22:14 Creating a more peaceful patient experience

Claudia explained why preparing for healthcare appointments can help to reduce stress. 

‘’So you are allowed to have health goals. You are allowed to have intentions for appointments. You're allowed to voice those intentions for appointments. You're allowed to prepare, and you should prepare for appointments. If I have an intention at this appointment that I want to get this specific thing answered, let me backtrack and see what information might be helpful for that physician to help me clarify that and help me get to where I want to go. And so I'm going to start taking notes, taking journals. Maybe I just started a medication. Let me take notes on how I'm feeling after the medication. Maybe I have trackers of my blood pressure. Let me keep all that information instead of sitting in the doctor's office and the waiting room, scrolling my phone or looking through magazines. What else do I want