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I was deeply honoured when I was asked to speak at the 2013 Community Care Access Centre (OACCAC) Conference at the Westin Harbour Castle Hotel in Toronto. The room was filled with a delightful group of healthcare practitioners, policy makers and caregivers. It was the perfect opportunity for me to share publicly — for the very first time — the story of my empowerment from a patient’s perspective: ‘Be the CEO of Your Own Healthcare’.
As you may or may not know, my relationship with the healthcare system begun very early in life, even before the tragic car accident that left me disabled. I was born with a very rare skin disorder that is sometimes called EB and sometimes referred to as the Butterfly disease. It is sometimes called the Butterfly disease because the skin of those born with the disease can be as fragile as butterfly wings. I am lucky in that my condition is quite mild and I seldom suffer from blisters or ruptures.
I learned early on in life that the healthcare system doesn’t always have the answers that we’re looking for, and that we have to take initiative and empower ourselves to search further and wider for choices and solutions that speak to us.
This early lesson served me well during my recovery after the accident. 100 surgeries and procedures later, it was my Occupational Therapist who was the most instrumental in empowering me to think differently about my healthcare. She explained that I needed to think of my health recovery as a full time job, like I was the CEO of my company, and act as a CEO would. Her company’s mission statement was to get me back to the best health possible, and there were three major ways in which I was inspired and empowered to lead the charge of my own healthcare:
1. Support from my team.
Without the support of my immediate and extended family, friends and health professionals around me, I would not have had the strength to empower myself. In times of healing, and in happy times, your team and your support squad are your lifeline. Don’t take them for granted, and call on them to help you when you’re in need.
When life looks bleak and you’re completely unsure of your future, hope provides your with strength. As a patient, hope kept me going, and it’s imperative that healthcare providers and support teams support patients with providing hope.
3. Having Options.
Having options presented to me, or going out and seeking more options when I wasn’t satisfied provided me with purpose and ownership of my healthcare. At the end of the day, it’s up to the patient to fight or to move through their own healing process. Having options to choose from makes life a lot more empowering. When there are options, provide patients with them.
My hope is that all patients and caregivers work together to make this the norm in our healthcare system. And I will continue to share my life’s experience as my message for others. It’s the most valuable thing I can do with my journey.