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 maybe 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.

1. Assumptions are dangerous. I have learnt to TRACK if and when my appointments are made and to ask if my test results are available. Never to assume that the fax made it through, that 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 that helps you too?

2. 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?

3. ‘A deer in headlights’ is what I first felt like when I was asked in a medical appointment – “Do you have any questions?” I didn’t know what to ask. 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 can make a difference – don’t you think?

4. 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 try and take control of what I could. 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 a patient, I wanted to have some aspect where I was a MANAGER of my 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 hope to be able to share this insight with you.

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 as proactive as I can, 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,

Your patient

Writing Photo by Lonely Planet on Unsplash