A letter to my dedicated health care team
Have you ever felt uncertain, afraid and powerless? Not sure what’s around the next corner, thinking about ‘what if’ and ‘what now?’
I certainly have.
It was eight years ago when I was diagnosed with a non-malignant brain tumor.
I was given medications, yearly MRI’s and countless specialist appointments. It was like a full time job!
I was no longer a routine patient. I never realized how complex the health care system you work in was, until I fully stepped into it.
Amongst the chaos of a new scary diagnosis, being a young mother and wife, I had to find a way to calm my fears and navigate this challenge.
Uncertainty was a real thing.
I thought I would share a few things with you in the hope that you can use them and share them too.
You see, I am a firm believer in the power of collaboration, connection and communication. As a team, we can do more and go further. There is nothing clichéd about this statement.
- Assumptions are dangerous. I have learnt to TRACK if and when appointments are made and to ask if my test results are available. Never to assume that the fax made it through, the nine-month wait time cannot be shaved down. Not because of people error but because of complex system error. Now I track everything about my health: my symptoms, test results and reports. I know the story of my body. I think this helps you too?
- Yes, I have consulted the infamous #DrGoogle. More to satisfy the questions that keep coming. I found both 1-star and 5-star information and advice. I found life saving support groups and communities whose support and advice calmed me, spurred me on and encouraged me. As a result, I feel more EDUCATED and able to ask questions. I can have a more engaged conversation with you. I’m more involved because I am more informed. I think the time I now spend with you is more effective for us both?
- ‘A deer in headlights’ is what I first felt like when asked in a medical appointment – “Do you have any questions?” I had no clue. I also thought that you knew best. What I mean is, that the information I could give you or ask you might not mean much. Now I know that it’s important for me to ASK you questions such as Why, what if and How can we do this together? You see, when I put my list of questions together before my appointment with you, I am consciously preparing so that my time with you is as effective as possible. In a complex system, preparation and thinking ahead make a difference – don’t you think?
- I’m a manager at work and at home too I suppose! I realized that in order for me to feel less afraid, powerless and uncertain; I needed to take control. Not as easy as it sounds but I started with small steps. I set objectives for my appointments and goals for my health care. Teams become effective with good management and the same is true for my health. As patients, I think it’s important for us to be the MANAGERS of our health. I know I only get to spend a few hours with you each year, but I get to spend thousands of hours with my body.
I know my health is too important to take lightly, and I know you feel the same way too. That’s way I am going to continue to be proactive, take responsibility and put my health in my own hands.
But I need you by my side, because without you, my T.E.A.M Approach (Track, Educate, Ask, Manage) is just not as effective.
Thank you for all that you do,