How to manage expectations as a Chronically ill patient? (and how to support them as an HCP)

How to manage expectations as a Chronically ill patient?

In our last episode of season 3 of the "Revolution from your bed" podcast, I discussed managing our expectations from ourselves, our loved ones, care, and healthcare professionals.

Expectations can be good for motivation, but sometimes they can be disruptive. As patients, we have many exactions from you guys, the people who dedicated your life to making us feel better. This intimate relationship is vulnerable, sensitive and HCPs are not always trained or equipped to deal with our expectations of them

What can you do to better understand your Patient's expectations?

1. Set a "visit goal": ask your Patient what they want to achieve today. Setting this simple goal may be the difference between the disappointment of behaving of the Patient who often forgets to ask or say everything they intended to due to the stress of the meeting, lack of time, and the interaction with your authority as a medical professional.

2. ask your Patient, "How do you feel emotionally today?" We patients tend to reply how do you feel type questions with a physical description of discomfort and neglect to mention our emotional state; many times, we seek medical attention as the "tip of an iceberg" where the underlying cause, condition or emotional state is more acute as it seems. Addressing only our physical needs may lead to a gap in expectations.

3. Simply - ask the Patient what they expect from your relationship. You'll be surprised to know how many times the Patient expects and "confuses" a simple medical visit where the HCP is new at technical as an opportunity to "make progress" in the health journey and even to unravel other emotional, medical and social problems. Setting expectations from what both sides want and need will make things easier.

Tried it out? have any comments or Ideas? Talk to us! Comment, DM, or email!

Listen to the full episode here:

First-ever award nomination for Patient empowerment activities by HIMMS!

?? How fun it is to sit on the train and receive such an email :)

??? I was just informed that I was nominated for a prestigious international award in health entrepreneurship - I've been nominated for a?HIMSS Changemaker in Health Award! I'm honored to be considered.

?? The truth? Exciting! Not only because it is honor and prestige, But because a patient with a chronic disease receives recognition for his suffering in the context of patient empowerment. This means that the revolution of making genuine patient-centered care is no longer on the way. It is already here! And soon, we will be able to stop talking about Patient engagement or involvement and start talking about the era of Humans from both sides of the Patient bed at the center of care!

?? I'm excited! I would be happy if you vote for me in the following link; it takes a minute and will help me a lot to continue my activity!

I would appreciate your vote here:?https://bit.ly/3zuQe0o.?

I've been away for a while, is this "ok"?

I've been absent for a while... After a very stressful event, I was reminded of how life with chronic illness is. It is ok to not post regularly, and it's ok not to perform all the time. Even we entrepreneurs, doers, and changers need a break sometimes. And I will stress that even more than others. Especially us with invisible illnesses.?

Im back now. And will try to share more about my personal struggles and not only about success. We need a better view of reality here and highlights of the best moments we chose to share.

After battling illness for over a decade, including being bedridden for 10 years, I was determined to take control of my healthcare journey. I founded several organizations focused on empowering patients and solving my own medical mystery inspired me to help others. Through my advocacy work, social enterprises, and memoir Revolution From My Bed, I share tactics for patients to lead their care and provide a platform to help people live happier, healthier lives. My goal is for every person to feel empowered as the CEO of their own health. Through public speaking, writing, and my non-profits, I continue pursuing my passion for patient-centered care and self-advocacy. Find my books here.