“Change is the only constant” rings true in my life.
In 2010, I was diagnosed with a rare non-malignant brain tumor after the onset of vertigo and migraines. My son was only four at the time. During my patient journey, I had differing opinions and changes in treatment from the standard of care and realized a few important things. How critical it was to partner with my medical team, how important it was to be active in my health care and be my own advocate and how important it was to keep asking and get a second (or third) opinion if needed.
I started keeping track of all my medical records, educated myself on my condition so I could have informed discussions with my medical team, made a list of questions before each appointment and started to manage my medications and appointments – it was like a full time job!
In 2012, I became acutely ill with vertigo and migraines. I knew something was wrong even after the specialists and the ER doctor sent me home. Because I was active in my health care and educated about my condition, I kept asking questions. It was finally confirmed that my brain tumor had doubled in size. My brain was swollen and I needed brain surgery to survive. I am forever grateful that my husband and I kept on asking questions – it saved my life.
This experience highlighted the importance to me of being your own advocate, putting your health in your own hands and not being a passive participant in your health care. It’s also important to connect, communicate and collaborate with your medical team – in the interests of a better outcome.
After my recovery, I looked for various ways to use my patient journey constructively.
– I co-authored a collaborative study between patients and neurosurgeons at Johns Hopkins University to help increase collaboration between patients and health care teams and get more information in the public domain.
– I am passionate about inspiring people to put their health in their own hands, having personally seen the impact it can make to a person’s life. I developed The TEAM Approach for Empowering patients (Track, Educate, Ask, Manage) – a simple and easy-to-remember tool to help individual’s transition to being an active participant in their health care.
I recently spoke at TEDxStanleyPark 2018 on “Your health is in your hands” and how it might save your life – hoping this message will activate others to become proactive in their health care.
I’m a firm believer than when something in life is no longer an option, when a door closes, another door opens. It may be different to what you expected, but if you are open to looking for it – you will find it. That is definitely true for this chapter in my life!
Claire Snyman is an author, blogger and advocate for patient and healthcare collaboration. She is passionate about inspiring people to put their health in their own hands. After her diagnosis with a non-malignant brain tumor and brain surgery, she realized the importance of partnering with her healthcare team and becoming her body’s own advocate. She has co-authored a collaborative scientific study between neurosurgeons and patients and has developed a TEAM Approach for Empowering patients. She recently spoke at TEDxStanleyPark 2018 and has spoken at various other health-related conferences. Her key focus is looking for ways to guide people to put their health in their hands and work with their healthcare partners to achieve better outcomes. She recently published her second book; ACTIVATE: How to Save your Life in a Complex Health Care System. Claire volunteers with the Brain Tumour Foundation of Canada as the chair of the BrainWAVE BC program.