Living with two chronic — and sometimes critical – neurological conditions made me realize that I had to start standing up and being an active partner with my health care team. No one else would be there to tell my side of the story or speak up for what I really wanted to do when my condition worsened or when it was time to explore new ways to get me back to my normal status.
The next chapter in my journey as a patient began when I was invited to be part of a patient panel for the Patient, Client and Family Centered Care Workshop in October 2010. This was a very emotional event for me, because I had to share some of my worst care experiences with many of the people who had cared for me. But I felt that doing this was an important part of my being able to be an advisor. Many of those who heard my stories came up to me afterwards and told me they too remembered the events and were so sorry for the pain I felt. This was a learning event not only for me but for them as well. After this, I was asked to be a patient advisor in both the Neurology and Rehab departments and the ICUs in Saskatoon.
Is it scary being involved in these advisory boards? Absolutely! But when I see all the wonderful things that can come out of this work, I am happy that I’m involved and I’m happy when new families and patients join. I deeply care for those who have saved my life so many times. But health care, like most things, is not all rosy. If I can help make things better for staff, then I know things will be better for me and other patients.
Blogging feels like the next step in my evolution as a professional patient. I see it as a way to help bring the voice and perspective of patients and families to an even wider audience, to become part of a larger dialogue about making health care better.
Trusting myself and listening to my inner voice has helped make me a better partner in my own care and get the best possible care possible. I hope that my stories and experiences resonate with others – not only patients and families – but also people managing and delivering health care.
