Written by: Beth Inglis, Executive Contributor
Executive Contributors at Brainz Magazine are handpicked and invited to contribute because of their knowledge and valuable insight within their area of expertise.
Navigating a serious illness or health condition can leave you feeling disempowered and helpless within the context of a health care system where you are defined as "the patient." Julie’s story illustrates this.
Julie was in her early 50's, self-employed, and enjoying the re-opening of her community with the easing of Covid-19 restrictions. That all changed suddenly on December 30th, 2020, when she experienced flashes of light followed by vision loss in one eye.
Over the next 4 months, what ensued was a cascade of medical referrals, tests, scans, diagnoses, opinions, and recommendations. In that short period of time, Julie had seen five different specialists, all consulting on her newly discovered illnesses and disease processes. Unfortunately, this resulted in varying opinions and recommendations for treatment and management.
Julie was started on several medications, all of which had some side effects to be managed. As a result, test results were lost, referrals were misplaced, she was attending medical appointments almost daily, and she had thousands of dollars in out-of-pocket expenses that insurance would not cover.
Julie became increasingly overwhelmed and even hopeless. She felt directionless as she navigated her health issues and the healthcare system. She had no clarity on where all this was going or just what her efforts, time, and money were leading towards.
She longed to have one person oversee things and walk with her every step of the way as she moved between various clinics, hospitals, and practitioners. She wanted to feel partnered and seen as the expert of herself, the person who had lived in her body for 52 years.
Strikingly but not uncommon, at no time did any of Julie’s doctors or practitioners have a conversation with her about her goals or a plan to get her back to living a vital and full life.
What did that even look like?
And here we come full circle to the crux of the issue that Julie and so many of you are facing:
You are not in the driver’s seat of your health journey. As Julie put it, when she said, "I have no control over where the doctors are taking me on this ride," it can feel like a journey with no clear destination and no overriding navigation system. To Julie, it was like being a passenger on a long road trip with lots of other passengers, each using a different map and none of them having any idea of the destination, including her.
In essence, Julie’s story is one of moving through a healthcare system that sees her and you as "the patient." Not as the driver of your own health journey.
Take a quick look at the word “patient,” and you’ll find definitions like these:
"an individual awaiting or under medical care and treatment"
"the recipient of any of various personal services"
"one that is acted upon"[1]
And with descriptors like "awaiting," "recipient," and "acted upon,” the word “patient” implies passivity. There is no power or control inferred in that word.
For Julie and so many of you, it is no wonder that overwhelm, lack of clarity, and helplessness ensue when navigating a serious illness or health condition in the context of the healthcare system that sees you as the passive recipient of services and care.
If the idea of being in the driver’s seat is not supported or even talked about by the healthcare system or your practitioners, it is understandable that you might easily feel that your role is to be the passive, “good” patient doing what you are told. Therefore, you follow everything recommended to you for fear that you will be labeled a problem patient who’s acting “against medical advice” if you don't or you question anything.
So, if the healthcare system doesn't see you as empowered and in the driver's seat of your health journey, how do you get there? Is it even possible?
First, it’s not just possible. It’s a certainty that you can be in the driver’s seat. No matter what has happened up to this point, even if you have been passively moving along in the “patient” role, you can be in the driver’s seat of your health journey and stay there.
What’s the first step in putting yourself in the driver’s seat?
The first step is to take that 30,000 ft view of what’s going on in your health journey. This is the big picture overview. This means looking at where you are right now and defining where you want to get to— the goal or outcome you are moving towards. Then you determine who you need on your team to help you get there.
Being in the driver’s seat means taking that 30,000 ft view regularly because it’s empowering and provides clarity about the route you are taking so you can easily see if you are on track to your outcome. Doing this also supports where you spend most of your time, which is at ground level, zoomed in and focusing on your day-to-day efforts.
A health journey requires alternating between the 30,000 ft view and flying back down to the ground level, where you spend most of your time, energy, and efforts, concentrated towards reaching your outcome.
Simply leaving it here, however, doesn’t address the elephant in the room. People are often afraid to set a goal or outcome for their health, especially when they face a serious and life-threatening illness. So, they don’t. They avoid it. They often think that setting a goal means setting themselves up for disappointment if they don’t achieve it.
The problem with this is, if you don’t set a goal for your health journey, you put others in a position to define the outcome for you. You stay in that “patient” role and become a backseat passenger along for the ride while someone else defines the outcome that you “can” and “should” expect.
Instead, step into that driver’s seat and define your outcome. It’s where you want to be in six months or one year. Then, define what you are doing in that outcome? How are you doing it? Who else benefits when you realize your outcome? What’s possible for you and those you love when you reach and live in that outcome?
Don’t be afraid to be specific about your outcome. And always ask yourself this question: “Why is this outcome so important that I will do whatever it takes to realize it?” You strengthen your ability to reach your outcome when it’s connected to a strong “WHY.”
Julie hadn’t defined her outcome, where she wanted to be living her life in six months. And this was impacting her ability to take the next step beyond simply wanting to be in the driver’s seat to embodying it in her decisions and actions. So Julie needed to zoom back out to the 30,000 ft level and see where she was and where she was headed.
With guidance, Julie could do this and then focus on the next step: to look at what was working well for her in her health journey and what wasn’t.
This kind of deep-dive requires the experience and expertise of a specialized health coach, one who understands the healthcare system and, more importantly, can provide a framework with a step-by-step roadmap for just how to be in the driver’s seat in every aspect and circumstance specific to your health journey.
I invite you to think about your health journey. Are you moving along in that “patient” mindset, are you in the driver’s seat, or are you somewhere in the middle? What’s missing for you to fully believe, embody and live from this mindset so that you feel empowered and realize your health journey outcome?
You can be in the driver’s seat, empowered, supported, and guided by your healthcare team and realizing the outcome you define for your health journey and your life.
Beth Inglis, Executive Contributor Brainz Magazine
Beth Inglis is a leader in helping people navigate serious illness or injury in the driver’s seat, especially within fractured healthcare systems that can leave one feeling disempowered.
After 25 years working as a kinesiologist and occupational therapist and experiencing her own life-altering illness in her 20's, Beth recognized common ways in which people get stuck, overwhelmed, and disempowered as they moved through the healthcare and medical systems in the face of a life-altering health issue. As a result, Beth developed a framework and roadmap to help her clients become the driver and CEO of their health journey and stay there.
Beth is the owner of Beth Inglis Consulting and currently works with clients in Canada and the US. Beth holds a B.Sc. in Kinesiology, B.Sc. in Occupational Therapy and is a registered and certified Health Coach.
Beth’s mission is to put everyone in the driver’s seat of their health.
