Written by Alexandra Frost
Reviewed for Medical Accuracy for Torie Croog
When Kimberly Irvine, a single mom of two in Chicago, noticed a lump in her breast, she immediately alerted her doctor. Unfortunately, the doctor did not take her symptoms seriously since she attributed Irvine’s concern to her mother’s recent battle with brain cancer. Instead, the doctor reassured Irvine that it was something benign like a fibrocystic tissue. But Irvine knew her body and knew something was wrong. She demanded further testing and her instincts proved right: She had one of the most common kinds of breast cancer, an estrogen receptor positive ductal type of breast cancer.
After going through her own cancer journey as well as her mother’s, Irvine has learned so much about self-advocacy in the face of adversity that she published a book about it called Strong(ER+). Irvine unearthed her advocacy skills through trial and error, eventually becoming a health advocate supporter, educator, and consultant. In her book—which dives into Irvine’s experiences with cancer and single parenting—she shares how to equip yourself with knowledge and power to “make the right decisions no matter what storms come your way.”
We talked to Irvine about what she wishes every patient and supporter knew about advocating for his/her own health.
#1 Don’t be intimidated by the health care system
The best way through the healthcare system is by educating yourself, especially on complicated terminology, Irvine said. This can feel easier said than done—from doctor lingo to insurance information, dealing with a whole new world of medical jargon can seem difficult when you are in an emotional and physical battle to survive. But it’s worth the effort.
“When you are an educated patient, you make better informed decisions for your health and well-being,” she said, adding that she started Googling to find out more about cancer diagnoses, testing options, and standard courses of treatment. That led her to credible resources and advocacy groups such as Breastcancer.org, the Cancer Support Community, and the Triple Negative Breast Cancer Foundation, among others.
#2 Trust your gut
When Irvine’s doctor told her it’s “just a fibroid,” she said her gut instincts kicked in. “It was God’s way of nudging me,” she said. “...Don’t be afraid to stand up for yourself.”
Additionally, don’t be intimidated by people in positions of power or authority or perceive their ideas as more important than your own, Irvine emphasized: “Lawyers, doctors, CEOs of companies...they are just people, and [their position] doesn’t make [us] less than them. We have to respect ourselves, trust our intuition and believe in what feeling we may be having.”
Not sure how to start listening to your gut? An easy tip is to ask yourself, “Is this making me uncomfortable?” and explore your response.
#3 Silence your own voices of doubt
We have a variety of voices in our own heads that prevent us from truly self-advocating, especially in stressful situations--but it’s essential to quiet those voices to take care of our own health, Irvine said.
“‘Maybe I’m anxious. Maybe I’m overanalyzing. Maybe I’m living in fear. Maybe I’m overreacting.’ [These are all] things we often tell ourselves,” Irvine said, adding that women in particular can have a hard time challenging what’s being said to them.
When you start noticing these voices and silence the internal critics, you will experience a “domino effect,” she says, that will cascade to other areas of your life.
#4 Surround yourself with people who support you
Once Irvine allowed her sense of self-advocacy into all areas of her life, she realized her former husband wasn’t giving her the support she needed.
“I was moving so fast in life, I realized I wasn’t even in the right marriage,” she said. “ ... I realized I was truly unhappy, and tolerating things I shouldn’t be. The biggest battle is fighting for my life, so I had to be mindful of the decisions I was making.”
By surrounding yourself with people who will fight and advocate for you, your willpower to push on through tough diagnosis and treatments increases.
#5 Set boundaries on when and how you allow others in
Sometimes, people fighting serious illnesses are overwhelmed with the well-meaning outpouring of attention and questions from friends and family. Luckily, with a little help from modern technology, you can streamline your updates to your community and control when you are in the right headspace to communicate with others or not.
“Friends and family [get] concerned and [ask] about you. I was overwhelmed. In some respects, I wasn’t paying attention to that initially,” Irvine said. “People want to take you to treatment, help babysit, etc. They just don’t know how to help. … I thought, there has to be a simpler way to manage this.”
One such service that Irvine recommends is Caring Bridge, a blogging community you can use to update your support system when you feel like it. You can also visit the comments when you need a boost of support—or wait, if you just don’t feel like talking about it or thinking about it. Irvine ended up using mylifeline.org, another resource for managing and sharing your journey with supporters. (Of course, there’s always OneVillage!
Irvine’s journey through surgeries, chemotherapy, and to her eventual recovery helped her, and others, learn the power of self-advocacy. “Take care of your mind, body, and spirit,” she said. “…Believe in a higher power, whatever it might be. It’s important that you have something else to keep you centered.”