Following a medical diagnosis, often our first response is to become a hunter-gatherer. We want to hunt down information about our conditions and then gather and assess it. But sometimes, the information and process is far too overwhelming. Where do you start and what do you do?
I know that feeling all to well: for me it arrived at 10pm after an ER visit, when I was diagnosed with a nonmalignant brain tumor. After standing outside in the rain that night with tears pouring down my face, my primal instincts kicked in and I decided it was time to start building what I called my 'survival tool kit'.
If you find yourself in a similar position, here are some tips from my experience:
- Gather resources – The great thing about the Internet is the accessibility to data and information, but that can be a double edged sword. Beware the overwhelming influx of information and statistics you may find. It's important to search for reputable websites and information sources. Try to find nationally recognized organizations or ask your medical professional for guidance.
- Learn to ride the wave of uncertainty – Uncertainty is a normal response to any unknown circumstance in life. But when your health is concerned, the uncertainty can be crippling. Part of building my tool kit was finding ways to deal with the uncertainty before it dealt with me .
- Become your body's advocate - I became informed and organized, so I could become my own advocate by keeping copies of all my medical records, along with a list of questions for all my appointments. I realized I was the best person in the room to be my body's own advocate.
- Join a support group – There is something to be said for the support you can gain from others who have walked or are walking the same path. The role and importance of human connection and communication is so often underestimated. The support groups I joined, both online and in-person and which I am still active in today, were instrumental to my recovery.
Information and human connection can be very powerful tools for anyone dealing with a health condition or challenging diagnosis. It helps you feel more in charge and in control of day-to-day life when the future is uncertain.
Although change is the only constant in our lives, equipping ourselves with a set of tools, resources and connections, can often make that change more manageable in the chaos of the situation.
Claire Snyman is an author and a blogger. She works as a volunteer in the brain tumor community and a speaker, most recently at the American Brain Tumor Association's National Patient & Family conference. Twitter: @clairehsnyman. This guest column appears on "Diagnosis: Cancer" through our partnership with Inspire, an Arlington, Va., company with condition-specific online support communities for over 850,000 patients and caregivers.