As you may or may not know, my relationship with the health care system began very early in life, even before the tragic car accident that left me disabled. I was born with a very rare skin disorder, epidermolysis bullosa (EB). It is also referred to as the “butterfly disease,” because the skin of those born with this condition 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 health care system doesn’t always have the answers we’re looking for, and that we have to take the 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. One hundred surgeries and procedures later, it was my occupational therapist who was the most instrumental in empowering me to think differently about my health care. She explained that I needed to think of my recovery as a full-time job, as if I were 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 care:
1. Support from my team. ?Without the support of my immediate and extended family, my friends and the health professionals around me, I would not have had the strength to empower myself. In times of healing as well as 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.
2. Hope.?When life looks bleak and you’re completely unsure of your future, hope provides you with strength. As a patient, that’s what kept me going, and it’s imperative that health care providers and support teams support patients by providing hope.
3. Understanding available choices. Having options—or going out and seeking more options when I wasn’t satisfied—provided me with purpose and ownership of my health care. 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. Health care providers need to help patients understand the various paths that are open to them.
My hope is that all patients and caregivers work together to make this the norm in our health care 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.
Hear Melissa’s inspiring story and read her blog at melissavassalo.ca.
~ By Melissa Vassallo
Melissa Vassallo is a disability and healthcare advocate, blogger and speaker. She is a recent recipient of the Queen Elizabeth II Diamond Jubilee Medal.