The patient partner: the patient’s perspective

We are all vulnerable to health issues. Often, we believe such things only happen to others… but in reality, we are all “the other” to someone.

When symptoms appear, our defense mechanisms kick in, often unconsciously. For some, this results in anxiety or even distress.

The waiting period between a medical consultation and the first tests is filled with apprehension, which only intensifies when the diagnosis is confirmed. It’s also fair to admit that our first instinct is often to consult Dr. Google. Search after search, questions pile up… along with worries.

This phenomenon is far from rare—it’s universal.

So, who is best suited to reassure and support someone facing uncertainty? Most likely, someone who has walked the same path before.

In this text, I share my personal experience and how it led me to support other patients facing similar health challenges.

Rien n’arrive pour rien

A bicycle accident that could have cost me my life may have actually saved it.

The tests conducted to detect possible internal bleeding or injuries unexpectedly revealed a congenital heart defect. I was then monitored for seven years at the Quebec Heart and Lung Institute (IUCPQ) before undergoing surgery in 2017 to replace a faulty valve and repair an aortic aneurysm.

Ma recherche d’information

As soon as I learned about my “manufacturing defect,” I made it my goal to better understand my condition. This was essential for me, as discovering an aortic aneurysm had direct consequences on my daily life, particularly as a very active person.

Before and after the surgery, I refused to be a passive spectator, leaving all decisions solely to the specialists. This proactive approach helped me tremendously—not only in better accepting the major operation that awaited me but also in easing my recovery afterward.

Without realizing it, I had instinctively embraced the concept of a care partnership.

Ce que j’ai appris et partagé

My desire to share my experience led many people from different backgrounds, awaiting heart surgery, to reach out to me through various means. They had questions that, more often than not, a patient who had already been through the experience was best suited to answer.

These numerous conversations with my “heart brothers and sisters” allowed me to pass on key aspects of my preparation and recovery. Surprisingly, I later discovered that several scientific studies confirmed the behaviors I had instinctively adopted.

L’importance de rester actif

Physically, the key element in my preparation for surgery and recovery was maintaining healthy lifestyle habits by staying as active as possible.

This plays a crucial role in promoting a fast and lasting recovery while also helping to manage stress.

Se préparer mentalement et gérer l’anxiété

On the mental aspect, what helped me the most was seeking as much information as possible about the procedures planned for my heart.

I took the time to ask the medical team questions to leave nothing to chance and consulted all available resources. It is surprising to see how much information is accessible through various media, provided that one knows where to look.

Le patient-partenaire : pour les autres et pour améliorer les pratiques

Years have passed since that time, but I am still regularly called upon to share my experience with others.

This journey naturally led me to become a patient-partner. This approach places the patient at the center of their care pathway, allowing them to take an active role in decisions and collaborate with the healthcare team. It is essential to be able to participate in improving one’s own health when a medical issue arises.

Sharing one’s experience with others then takes on its full meaning. After all, who better than a patient can provide valuable insights about their condition and help tailor treatments to their preferences and needs?

Les qualités d’un patient-partenaire

Being a patient-partner requires an open mind and the ability to work as part of a team. Most importantly, it is based on a genuine desire to contribute to improvements that benefit patients.

This role involves:

Serving as a key resource for understanding the challenges of a new diagnosis.
Taking a step back from emotional aspects while still acknowledging them.
Sharing one’s experience without necessarily speaking in the first person.

The support of a patient-partner complements medical science by integrating the human and emotional aspects of care. This adds a more personal dimension to the treatment plan.

Invitation

If you would like to play a key role in supporting individuals preparing for heart surgery or contribute within the institution that provides your care, simply express your interest and take action.