How To Be a Self-Advocate:
Standing Up For Yourself as a Cancer Patient
What does "self-advocacy" mean?
The dictionary defines self-advocacy as “the action of representing oneself or one's views or interests.”
It seems like such a simple concept – standing up for yourself. But what if you don’t like confrontation? What if you’re shy? What if you get overwhelmed in the moment and don’t remember what you wanted to ask? What if you’re scared to ask a “stupid question?”
Here’s advice The Patient Story has gathered from real-life cancer survivors just for you.
“Regarding advocacy, don’t be afraid to ask questions. Don’t be afraid to ask for directions. If there are things you don’t understand, there are people around who can help you and give you honest answers.”
Self-advocacy is a term you may hear frequently in the cancer community. Key things to remember are:
Asking questions can be difficult when you're feeling overwhelmed or scared.
Many contributors have told The Patient Story similar things in response to dealing with the overwhelming feelings they experience. Their most common practical tips are:
Make a list of questions to bring in and talk to your doctor about as they come to mind
Keep a journal
Bring someone with you to appointments to a) calm your nerves and b) remind you of anything you’re forgetting to ask
Remember that there’s no such thing as a “stupid question.”
If there is something that’s important or scary to you that the doctor hasn’t picked up on, speak up. If your doctor feels strongly about something, it is their job to make you feel comfortable based on their education, training, and experience.
Kidney cancer survivor Bill Paseman shares the one question he always asks:
“My most important question is always the last one: ‘What question should I have asked that I didn’t?’”
Thyroid cancer survivor Greg Sable has a firm reminder for other patients:
“Be prepared, write down your questions, be your own advocate because nobody else is going to do it for you.”
Choosing your doctor is a form of self-advocacy.
It’s important to understand that doctors live in the world of medicine. A cancer diagnosis thrusts a person unwillingly into that world. Choosing a doctor that understands this concept is critical in making your cancer treatment as manageable as possible.
If your doctor is not making sure all your questions are answered, ovarian cancer survivor Maurissa Mitchem says, it’s up to you to make a change.
“If you’re not comfortable with any doctor then I think it’s upon you to make the decision to change doctors. I know we don’t like to. We’re creatures of habit, and we like comfort, but sometimes you have to change a doctor to get the help that you need.
We have to advocate for ourselves. “
Rachel Rhee is a social media influencer who went through kidney cancer treatment in 2018. Her self-advocacy came into play when she had to choose the right doctor for her specific needs.
“With the doctor I chose, I didn’t feel like I ever need to stand up for myself. That’s the reason I chose him. With the two doctors I saw before him, I think they felt like, ‘Oh, it’s just a simple surgery, no big deal.’
This is their world, so they see things very clearly. There wasn’t any emotional connection with me. That’s when I decided something didn’t feel right and decided I need to stand up for myself, so I went somewhere else until I found my doctor.
Every situation is different, but it was really important for me to have a doctor that cared and wanted to make sure I was comfortable.”
Rick Henrikson is a testicular cancer survivor and believes trusting your doctor is an important part of your treatment. Finding the right doctor means finding a doctor who has your best interest in mind.
“I think it’s always important to be an advocate for your own health and to get second opinions and to find somebody who you trust, who can give you guidance, and who isn’t necessarily just trying to preserve their own medical career.”
Self-advocacy or the lack thereof affects your physical and mental wellbeing directly.
She says she pushed for post-op scans even though they weren’t covered by her insurance. She wanted peace of mind, and that’s what she told her doctor.
“I pushed for post-surgery scans. My doctor wouldn’t have recommended them because insurance didn't cover it. We've gone above and beyond what is insurable as far as some of our tests and appointments and therapies, but it's been beneficial to me.”
Many patients, including Rachel Rhee, agree that throughout their process, their mental well-being directly affected their physical health and vice versa.
Stress can take a toll on your body – especially when you’re going through harsh treatments like chemotherapy, radiation, or recovering from surgery. If you’re feeling stressed or overwhelmed, you should always ask questions if it will ease your mind.
Self-advocacy really comes down to listening to your body and speaking up for it.
It is your body after all. No one else lives in it. If something doesn’t feel right, say something.
Arielle Rosen is a non-Hodgkin Lymphoma survivor and went through 6 rounds of chemotherapy. She started experiencing neuropathy after beginning her treatment. She spoke up, her oncologist adjusted her dosage, and the neuropathy went away. Her advice?