Becoming your Own Medical Advocate

When medicine is big business, we have to become the CEO of our bodies.

I’ve found that when dealing with illness or pain, we often feel like our health is one big mystery; we act as if what’s going on in our bodies is none of our business. But I say this is the only body I’ve got, and you better believe I’m going to make it my business! We should all feel empowered to learn about our illness, to ask informed questions, to work with our providers to find alternatives and to ensure that our voice is heard.

Here are a few things that I have learned from my own experience:

Scan Anxiety

Waiting on test results is always more frustrating than any pain I may need to endure while I’m having the test.  

A tip to keep in mind:  Find out how your physician handles test results beforehand. Some offices call patients with test results only if there is a problem. If in doubt, or if you are anxious about test results, call.

MRI’s: Are you tech savvy? Get access to your electronic medical records. You can check the results without picking up the phone. I may not understand everything that I am reading, but I can compare my previous scan to see if there has been any new progression. For me, this takes away more than sixty percent of the stress and anxiety. 

PET Scans: I have my PET scan done at our local hospital. I go first thing in the morning. Hey, I am fasting… and why wait all day? At the end of the workday, I  head back to the hospital, and I am able to pick up a copy of the scan results and read the radiologist’s notes. Again, for me, this keeps any excessive worry in check. Just call me a control freak. It is my body, my cancer, and my choice to know whatever is going on quickly. But if you aren’t able to get your results other than by waiting on your doctor, then do keep in mind that no news is almost always good news.

Study Up on the Facts of Your Illness

Much of my research has been done by joining private Facebook groups. The people in these groups and I all have similar diagnoses, and I learn through their experiences. Keep in mind, if you are part of one of these groups, the people in them are not medical professionals. So just beware of going down a rabbit hole!

Write down questions you want to get answered as they come up. Keeping them on my phone works well for me. It isn’t always easy to remember what you want to ask your doctor from appointment to appointment. Having the questions on my phone is helpful for me, my husband, as well as my oncologist. I have also found that when I am able to ask my questions using medical terminology I often get better results.

It is my body and my decision.

We all know our bodies better than our doctors, but did you know that we can get to know it even better? By beginning the process of tuning into your body (through meditation, journaling, food diary analysis, mindful breathing) can help you to accurately convey symptoms and feel more connected to what’s going on in your body.

Who are Your Teammates?

Assemble a care team that wants to work with you and foster your empowerment. Don’t be afraid to make changes if you don’t feel supported by your health care providers — it’s meant to be a two-way relationship.

After six months of treatment, I fired my oncologist. I felt like a number. For all the time I would spend with this specific doctor I knew if he saw me outside of his offices he would have no idea who I was. My oncologist is someone who will be treating me until the end, and I needed to feel a connection, which was lacking. So as uncomfortable as it was, I spoke up. It was the best thing for me, and I am so grateful that I did. My relationship with my current oncologist could not be better.

Do You Need an Advocate?

You may have heard of people having health advocates that accompany them to doctor visits or a family member who acts as an advocate. It’s always great to have another pair of ears during appointments to ensure that nothing is missed. I highly recommend having your own form of an advocate if you don’t yet feel comfortable on your own.

Take the time to consider how you will show up as your own medical advocate before your next scheduled doctor visit.

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