I Am Not Helpless (And Neither Are You): Ways to Advocate For Yourself

May 5, 2020
Martha Carlson
Martha Carlson

Martha lives in Illinois and was diagnosed with metastatic breast cancer in January 2015. She has a husband and three children, ranging in age from 12 to 18, a dog and a lizard.

You don't have to be "difficult" to speak up for yourself and get the care you deserve.

Over the past month, I've been reminded that there's never a right time to let go of your active participation in any health care decisions. Yet, advocating for yourself can be more difficult than doing so for someone else. I think this is a common experience for people with cancer, regardless of gender or age, since we are in a vulnerable position that demands we put our trust in other people and the health care system.

In return for this trust, I expect my healthcare team to treat me with respect and include me in decisions and behaviors that impact my care. I think this is a fair exchange, and I felt somewhat secure in its practice until recently.

First came a switch to my primary IV-administered treatment. A switch that I didn't learn about until I was literally hooked up to it. This change was not due to the progression of cancer but was a move to a biosimilar of the medication I had received for the past 5 years. I subsequently learned that many other people with breast cancer had similar experiences.

As I sat in that treatment chair, messaging my oncologist and her nurse, I thought about how I had known biosimilars were making inroads. Perhaps my insurance was now denying the "brand-name" medication (It wasn't and isn't)? I was already unhappy about my failure to speak up earlier in the day when two people who work with my oncologist downplayed the seriousness of COVID-19 for cancer patients. At the time, I felt chastised for commenting that they were not wearing masks, yet I didn't demand either put one on at that moment.

It's true that I wish neither of these events had happened, but they have reminded me that self-advocacy is more than just a phrase — it takes a consistent application to be most effective. I allowed myself to break the "rules" of advocating for myself, but I won't next time. Here are some guidelines for you when the time comes to speak up for yourself.

Ask Questions

I do hold my oncologist responsible for not talking to me about the biosimilar switch. I believe that patients must be able to ask questions about any proposed changes and that unilateral decision-making isn't okay. I don't ever want to be caught off-guard like that again. I have added the question, "Are there any proposed or imminent treatment changes I should know about?" to my standard visit questions.

Be Persistent

I spent nearly a year persuading one of my doctors to start me on an oral medication similar to a twice-daily shot I was giving myself. It was, frankly, tiring. It took time for the research to catch up, but I started him thinking about this change for my own care by not failing to bring it up every single visit.

You Can Say "Stop"

If something is happening that makes you uncomfortable, like the undiscussed switch to a biosimilar did for me, it is okay to ask that treatment pause long enough to contact your doctor and/or oncology nurse and discuss the next steps.

Be Knowledgeable

Many people don't want to learn the specifics of or the science behind their care. If that's you, try to find someone to take on the task for you. In my case, I was familiar with the research around the biosimilar and though I wasn't happy about how the switch happened, I was secure that it was a suitable medication. You want to know what your treatment is now but also what it could be in the future and how your current treatment affects your options.

Speak Up

Why didn't I let two junior members of my healthcare team know what it felt like to be dismissed when I expressed concern over their lack of masks? Because no one wants to be the difficult patient. If your health is at stake, if you're uncomfortable or concerned: Be the difficult patient. I say "difficult" but what this term usually means when applied to patients is far more positive: knowledgeable, courageous and opinionated.

Know Your Insurance

When the switch to the biosimilar happened to me, the first thing I did when I got home was contacted my insurance. I was willing to believe that coverage had forced this change. When I learned that was not the case, I immediately asked for an explanation from my oncologist. I'm not particularly satisfied with the explanation, but together we decided I would go back to the original medication. Insurers have many guidelines that can't be ignored and that could affect your care, so try to know them.

Show Grace

Sometimes you need to extend grace to others and forgive their mistakes, but extend that to yourself as well. It is hard to be on constant high-alert with your oncologist. You won't necessarily behave like the powerful advocate you are. You are human. You may be scared, tired and unsure. Be kind to yourself in these moments.

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