Patient, Person, Actor, Life.

As we wrapped up the last day of Mayo Clinic Center for Innovation Transform 2015 yesterday, so many thoughts are running through my brain. And said brain is mush, ya’ll. I’m traveled out. I’m conferenced out. I’m worked out. I need a vacation! But it’s all so worth it. I’m forever changed by all of the incredible people that I’ve met, the ideas that have been pitched, the businesses that have presented, and the stories that I’ve heard.

  

We talk so much about seeing the patient as a whole person and the concept of labeling. Yes, there is stigma around labeling. Yes, labeling can be detrimental and negative. However, sometimes we need labels and we have to stop living so black and white about them. Labels are traditionally benign and essential in conversation and innovation. The difference is the idea of malicious labels vs. idea-generating labels.
Getting a bit more granular about this is the concept of patient vs. person. I see some comments on social media shaming the use of the word patient because we should be considered a whole person and not just a healthcare term. Well, yes and no. As I always say, extremism of any kind, from either end of the spectrum, is not only dangerous, but just plain ignorant. I believe the most developed opinions trend more towards moderate than leftism or rightism of any kind.

  
I digress. I don’t find issue with being referred to as a patient. Frankly, sometimes I’m tempted to call myself a professional patient. Chronic diseases are not the typical healthcare model for care. I see at least one of my physicians in my care team a minimum of once per month. Usually I have a couple doctor’s appointments per week or every other week. If that’s not being a patient, then I don’t know what is. And it’s not offensive to be a patient. When did we get to the point where ‘patient’ was like calling someone the f-word?!
On the flip side of all of this, we are not JUST our diseases. I am not JUST fighting 6+ chronic diseases. I am a social media professional. I’m a woman. I’m a friend. I’m a sister. I’m an aunt. I’m a daughter. I’m a well-read person. I’m a healthcare professional. I’m an introvert. I’m a goofball. I’m a weirdo. I’m a cat-mom. Etc.

  
Yes, I am a whole person. But I am ALSO a patient. Yes, I am NOT my disease. But I do ALSO have diseases. It’s about creating a well-rounded person, not just defining us by one or two things. In fact, something that chronic disease patients know all too well is the necessity for multiple facets of a treatment plan, i.e. not one medication or therapy or lifestyle change will properly manage chronic disease. You need to balance using all of those options to find the happy medium. That applies to us as human beings as well. We are not just one thing. Humans are complex. Patients are complex. Life is complex.

 

  

On another note, as some of you might know, I spoke at the Mayo Clinic Center for Innovation Transform conference, Think BIG Challenge. I represented the persona of “I am NOT my disease,” titled Chronically Kristin. The premise was that various businesses needed to ‘pitch’ their innovation to me as a chronic disease patient, and then the audience would vote on which company was the best match for the chronic disease patient. The winner won $50,000 from the Mayo Clinic. First of all, I loved this format (like a dating game show). It was both innovative and health savvy. I would argue to say that the audience learned much more about the businesses and the persona than a typical business or sales pitch, which often turn the consumer off.
It was also such a honor to be able to share my story to 700+ people and speak bluntly about chronic disease and what that feels like on a day to day basis. Overall, the speech and Thing BIG challenge went SO well and we all had a lot of fun. Thank you so much to the Mayo Clinic Center for Innovation and Avia Health for including me, researching with my blog, and inviting me to participate in such an innovative way. 

  
I don’t find what I’m about to say necessarily negative; however, it’s interesting and speaks to the discrepancy still apparent between the healthy system and chronic disease patients. I had a handful (3-4) people come up to me after the challenge and ask if my speech/story was real, or tell me that I was “so believable!” The look on their faces after I told them that I wasn’t acting, and that what I shared is real, and true, and actually my life was interesting. Be it embarrassment or shock, I’m not sure, but it does show that we have a long way to go in making these conversations commonplace in not only the healthcare system but in society as a whole. 
I have a renewed and blossoming fire/drive to really work on this patient advocate side of my life. I do want to change perceptions. I do want to change our healthcare system for the better. I think conferences like MedX and Transform are making this a reality. Patients should not only be invited to the table but they should sit at the head. One phrase I heard his past week put it so well, with reference to patients: if you’re not eating at the table, you’re part of the menu. 
These conferences have really changed patient-centric, or patient-first from just being buzzwords to being real and actionable. I will continue to change the world, will you?

xo,

Chronically Kristin

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