Collaborating with my care team requires me to advocate for myself

Advocacy isn’t just cool; it’s often a matter of life and death.

If you’ve read my column, you know how passionate I am about advocacy. Given my experience living with cystic fibrosis (CF) and undergoing a double-lung transplant seven years ago, I can confidently say I’ve got skin in the game.

Self-advocacy has saved my life on several scary occasions. I’ve also taught others how to advocate for themselves and think outside the box to solve their health mysteries. But there’s an aspect of this topic I haven’t touched on yet, and while it may be considered a bit scandalous, it needs to be addressed: the doctor-patient relationship.

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In my experience, this kind of relationship has often resembled that of a parent and child. At times I’ve been treated like a kid, with the expectation that I’ll do what I’m told without questioning how it will affect my body. Other times, I’ve been made to feel like I’m in trouble for asking to have my needs met. I’ve also been labeled a “difficult patient” after expressing that I’d like to be a part of conversations in which decisions are being made about my body.

Unfortunately, I’ve learned the hard way how damaging it can be to follow a doctor’s orders blindly. For me, it’s resulted in irreversible health issues, medical emergencies, and traumatic events. On more than one occasion, my concerns fell on deaf ears, and doctors made decisions about my body without me.

These experiences taught me that doctors are, in fact, human and don’t know everything. They also taught me that I need to do whatever it takes to be heard — even if that means switching medical teams. It’s not worth it to go along with the plan simply to avoid making waves.

There’s no one-size-fits-all plan when it comes to health management. I have a unique health history; as such, I’ve learned what works and doesn’t work for my body. Being treated like a case study in a textbook rather than a person with specific needs has a negative impact on my well-being.

Fostering healthy relationships

Despite past traumatic experiences, I’ve learned that healthy relationships between medical professionals and patients are possible. Even though it’s taken time, I’ve found a team that meets my needs. There is hope for healing.

I’ve been blessed with the CF and transplant team I’ve worked with for the past five years. Our relationship is healthy, our communication is on point, and our collaboration has been easy.

My team listens to me and takes my concerns seriously. They respect that I’m the expert on my body. They’re also fantastic at fielding my questions and ensuring I understand my health and any changes related to medications or procedures. We make decisions about my health together, which is refreshing.

What I’ve found over the years is that medical professionals who are confident in their abilities have no issues with patients asking questions. In fact, they invite them. Playing an active role in my healthcare, rather than being a passive participant, is encouraged.

If your doctors don’t share these qualities, it may be time to switch teams. Nobody cares more about your health than you do, and finding physicians who will support and empower you to be involved in your care can be lifesaving. There’s no time to be afraid of offending medical personnel; your life is at stake. Through informed advocacy and strategic collaboration, you can establish a care team that treats you as an individual, not just a number.

Note: Cystic Fibrosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Cystic Fibrosis News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to cystic fibrosis.