Guest Post by Steve Van, Patient Advocate

Okay, let’s face it. When you have a chronic condition, it is hard to stay motivated enough to deal with all the issues that come with your disease. Whether you are a mother with three kids and a full time job, a student going to school while working, or someone in the office 24/7 for a demanding job, it is hard to stay dedicated to a healthy lifestyle and to take the time to manage your chronic condition on top of everything else going on in life.

Year after year, I found myself losing the battle of motivation to stay focused on my condition and manage it with energy. What I have come to learn is that I was lacking the support and tools I needed to sustain this enormous effort. I kept my disease and challenges to myself because I did not want to burden anyone with my issue. In reality, this approach could not have been more wrong, or more selfish. What I found is that I have motivation all around me, and taking advantage of my support system made the difference.

For many years, I lived in isolation and kept my condition and challenges private, despite spending all my time alongside my wife, kids, and friends who cared about my health and wellbeing. I pushed myself to keep motivated with pure blunt force, but experienced little to no success in controlling or self-managing my condition.

I am lucky enough to have support all around me, but at the time, I was unable to open up and look at the opportunities I had before me. I have always had a support team  – but I was too busy looking inward and not outward. I was too resistant to share my challenges with those around me, thinking that they would think differently of me because of my illness and my struggles with my illness.  

Finding my motivation was like peeling away an onion, layer by layer. With each layer I peeled off, I found another support team surrounding me. Can you see your support rings?

Take this journey with me as I open up, layer by layer of motivation that is around all of us.  

The first layer: sharing my struggles with my loved ones

We start with looking at those people closest to us in life.  For me it is my wife, Cheryl, who is my life partner and the most calm, caring, loving, and steady person in the world that I ever want to know. Despite this, I held back in sharing all of my chronic issues with her. As a result, I missed the opportunity to gain her support, encouragement, and motivation to stay on track with my disease.

And, I held back on sharing these same issues with my children. As a parent, where my inherent role is to be their support system, I did not want to show what could be viewed as a weakness. Showing these vulnerabilities, to me, often was more difficult than it seemed it would be. Once again, I missed the chance to have them be my cheerleaders for motivation as I am with them.  

The second layer: finding strength in friendships

I have had the same approach with my friends, never sharing the challenges and successes working with a chronic disease, but by doing so, I missed the chance to enter into a much deeper and open relationship with those I respect and care so much about. And, I found that many friends had similar situations, and exchanging stories could help one another.  So many times I passed on attending parties or events with friends and family because of my condition, just telling them I couldn’t make it instead of explaining why my health was holding me back.

I learned it is also important to ask those very same friends for support when trying to manage your condition for help. Yes, ask them for help. It is okay to do this and you will be surprised to see that they will help you. Help can be just grabbing a coffee together to simply let it out, or helping think through how you are managing things.  When I finally told one of my best friends about all of the challenges I was having with my chronic diseases, he was shocked, and quiet. When I asked him why he was so silent, his reply was, “Why didn’t you tell me? I thought we were friends.” I told him I did not want to bother him with my condition. He then replied, “I am your friend. I take the good and the bad.”   

He was right. I recently had a procedure and at the last minute I needed a ride home from the hospital – and all it took was one call. I did not need to explain the “why.” I am fortunate enough to have these support systems, and once I decided to lean on them, I was able to grow. When you open up and peel the layer back, you can often feel exposed, even vulnerable, but trust yourself. As you and your new layer mature, you will grow in strength, focus and motivation.  As a result, I no longer apologize for my illness – I embrace it.

Leveraging your care team and the case manager

And yes, another layer, often not acknowledged, are the care teams I work with that help me in many different ways to manage my chronic condition. As you may know, these are the people that you see when at the clinic or doctor’s office during every step of the process – from receiving you at registration, to taking your blood pressure, and prescribing your medications. I have learned by experience to share my progress with them and gain their support and encouragement. As a result, all of them have strengthened my motivation to continue to work through the challenges of my disease. When I step into the office now, they ask about my progress and are too my cheerleaders for better health.

The clinics where I receive my care have case managers for patients with chronic conditions or multiple medical issues. The case manager is a nurse that helps you connect your condition with the best provider in the hospital and or clinic for your situation. They are the true superheroes of medicine that are often under-appreciated, but they are there. I received a call one day and this manager suggested that we work together to make sure that I was managing my care and that she would work with me to make all the connections with the doctors, help in scheduling my appointments and help with understanding the test results when needed.  

There was a point where I was very fatigued, unable to keep focus and had gained weight to the point of my feet swelling. My case manager recommended that I make an appointment with my cardiologist very soon, and I did. When I showed up to the appointment, my care manager was there for support and to help me describe my symptoms that I was having, which I shared with her over time.  I was shocked to see her at the appointment – and so was my doctor.

This was the inflection point in the care for my chronic condition. In the past, I would give my information and receive nothing back. I believe that in these exchanges, when you share something and get no feedback or support in return, you hesitate to give, or choose to not give at all in the future.  

This is what happens in healthcare today. You give your information and receive no feedback or response as a result of that information. So, understandably, you lose trust in the process. In the past I just quit giving data, and quit trying, because I did not trust that my condition would change if I continued to try.

That is where my case manager made the difference, so that I could better trust in the relationship. As I gave her my data, my information about my condition, she showed up and helped make a difference.  She heard me. She followed through with support and connected me with the clinicians that could make the difference. The connection at this granular level is a vital element to the delivery of healthcare  – and unfortunately, it’s most often overlooked and undervalued. The case manager represents a very thick layer of the onion and represents full coverage of the patient.

And, from the first conversation to the last, my case manager would ask me a series of questions that would assess my mental condition.  Although I was not sure in the beginning why she asked these questions, it became clear later. I will go into this in more detail in a future blog because it deserves individual attention, but this was and is very important to feature of the role of the case manager.  No other care provider had asked about my mental condition.

Since this appointment, I have had three other case managers, and each of them were and are fantastic. They helped me understand how to navigate my care within the large and faceless healthcare system. She was my advocate, making the calls, pushing for the appointments and getting better results. No endless phone calls, no multiple appointments and great follow up. I had a weekly conference call to review all of my medical issues and tests to help keep me on track for better health – and it worked.

Though it may be easy to take the healthcare system’s resources for granted, relying on my case managers made all the difference in improving my health.

Don’t overlook your health plan, or your pharmacist

A hidden secret is that most insurance companies have care teams that can also be your cheerleaders. One of the insurance companies was able to provide guidance on my prescriptions regarding cost, delivery, and detailed information about the medications that I was taking.

In addition, they often offer their support via contact from a nurse that calls you directly to provide feedback and guidance, and can answer any questions about your condition. After all, it is in insurance companies’ best interest for you to be healthy and motivated to care for your condition. This care and motivation make economic sense for them – and it’s a benefit you’re already paying for through your premiums. Take advantage of this and understand that some layers are thinner than others – meaning, some support systems will be stronger than others, and that varies from person to person.

And, another often overlooked team member for your support is your pharmacist. We all know that your doctor writes your prescriptions that help manage your condition and he or she has a specific reason for that Rx. However, your pharmacist has an equal, and often greater, understanding of that specific medication. The pharmacist can answer all of your questions that relate to the medications and also help provide answers to any side affects and costs associated. Importantly, they can provide the customer service when dispensing your meds when other care team members do not have the bandwidth to do so. The pharmacist has been an incredible value to the care of my condition and a great source of how medications affect my overall disease.

How the data can be the motivator

Another not visible, and often overlooked, but very effective form of motivation comes from my wearables and patient-generated health data (PGHD). I use a variety of apps to track my health, nutrition, and exercise; and, my sons have helped me understand how they provide instant feedback on my progress or lack of progress.  One of my sons, who is on his way to be a psychologist one day, helped me understand that a jolt of instant gratification from one of these apps can keep me coming back for more and help me stay in my zone when it comes to my blood glucose values. My other son taught me how to use an activity tracker that counts my steps, charts my daily workouts, and lets me know my status during the day. This status keeps me on track with my goals, directs my focus, and measures my progress so that I meet my goals by the end of the day. And, this success keeps me motivated to come back the next day – with full knowledge of my accomplishment and energy to continue.

My long term goal is to be able to share my PGHD with those cheerleaders in my life, like my care team or health plan, that can provide the guidance in real-time and not just on my quarterly visits. By sharing this data with my healthcare providers, they can offer actionable encouragement with direct adjustments or suggestions that can present a better outcome. If I was able to share my blood glucose numbers with my endocrinologist, he could evaluate my insulin dosages at different times of the day and make the necessary corrections to prevent highs or lows that I cannot see. In addition, my diabetic nutritionist could see and evaluate the actual food I eat and provide real guidance to make better, more informed choices that keep me in the zone for better readings over the course of the day, week, month, and beyond.  

With access to my data, my cheerleaders – the layers to my onion – could be with me at all times, providing the support and feedback I need to stay motivated and keep going.

When I took the leap to share my challenges with the layers in my onion, each layer of my onion grew with the motivation I received from them. My kids often send me blogs or articles to read that keep me connected in a positive way with my disease. My wife encourages me to stay in my zone and continues to shine a light on the small things that bring positive and fruitful results (that in the past I would have not realized). My friends are thoughtful in their encouragement for me to stay motivated when I come to eat at their home or go out on the town. My care team has come to cheer for me at every incremental step I take forward, and the more I succeed, the more they encourage. I am encouraged and motivated each time I see them and more so when I leave them on my visits.

I know this sounds like minute layers or small acts of motivation, but that is what will carry you through each day – day after day, week after week, month after month.  As I peel this onion, I am learning that it is not one big thing or event that lifts my wings, but small incremental steps I take that add up to create the momentum of motivation and flight.

And, this motivation, positivity, and support is infectious. I have come to learn to share encouragement and motivation for their goals as well. The ability to receive support and see how it affects my personal success in managing my condition encourages me to motivate those around me as well. And, I’m able to use my voice to explain my experience, rather than having others tell it for me.

As my motivation grew, my ability to advocate for myself grew as well. I have become more confident in my own ability and have, as a result, learned how to be my own motivator for continued good health too. I have also come to see that all of my cheerleaders are also my advocates, for me and my chronic condition. If I would have never reached out and took the chance to share my struggles regarding my condition, I would have a small anemic onion that could never grow in health and life.

Plant your seed, and grow your onion.

Steve Van was diagnosed with type II diabetes at age 40, like his father, uncle, and grandmothers before him. After struggling for decades to manage his condition and subsequent ailments like atrial flutter, Steve joined a pilot program which used home health devices and wearables to connect his biometric and routine data – that he was generating each day – to his care team in real-time. This program helped Steve’s team identify a negative habit and intervene for sustained behavior change, leading to a major improvement in his health. After losing more than fifty pounds and lowering his a1c by nearly 2 points, Steve now advocates for the use of patient-generated health data to help patients better understand and manage their condition. Connect with Steve on Twitter.

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