How to be Your Own Patient Advocate
I recently gave a talk at a healthcare company's team offsite about my patient experiences and why what they do matters. In the course of the fireside chat, I was referred to as a "savvy healthcare consumer" and I recognized how different the course of my and my family's life would be had we not advocated for ourselves. I think of the countless points of friction, ranging from insurance denials to misdiagnoses, that would have had ripple effects across my mom's, my father's, and my own health outcomes had we not persevered and overcome them. Unfortunately, most people do not know how to advocate for themselves and navigate the health system. They do not know when it's OK to question the doctor or what questions to even ask. Learning how to be their own patient advocate could change not just their own life story, but also that of many others' as well.
The one month between learning of my cancer diagnosis and actually beginning treatment was the longest month of my life. Through those weeks, however, I had invaluable learnings for someone transitioning from "healthy" to "patient". I first published these learnings in a post titled "My Learnings from the Pre-Treatment Phase" on my cancer blog in 2014, but I include a modified version below to be applicable beyond a cancer diagnosis.
Be aware of changes in your body: Whether it's doing self-exams or recognizing a tingling in your arm, being familiar with your body and the changes in it help build your intuition for when something might be wrong. Building and trusting this intuition is the first critical step to being your own patient advocate. My experience with self-exams helped me build the intuition I needed to recognize my lump as something new and of possible concern.
Healthy paranoia can be your friend: While I'm not promoting hypochondria, if you sense something is off, act on it. I knew my lump could easily be pregnancy-related, and probabilistically, it should have been. Healthy paranoia, however, drove us to the OB-GYN’s office and eventually to a biopsy, despite a number of reasons to not bother. It was not only a great friend, it may have saved my life.
Be forward-looking: It’s perfectly fine to be shocked and to cry and to wonder how life can be so unfair. Soon though, you realize it is more empowering to focus energies towards action. Figure out what needs to be done and work towards doing it. As my husband likes to recite,“Hope is not a course of action.”
Emotions come in waves: You never know when and where what emotion will hit you. It can vary when sharing the news of a diagnosis with family and friends – sometimes I cried, sometimes I was very composed and just spoke matter of factly, and sometimes I kept laughing as a socially awkward defense mechanism. Even now, years after being in remission and knowing how much good has come from my diagnosis, I'll have unexpected triggers. This is all perfectly normal - be kind to yourself.
You never know how someone might be able to help you if you don’t open up to them: I've said before that the more vulnerability I have shared with the world, the more the world has embraced me in return. Our willingness to be open about my diagnosis helped me get access to better care and more physical and emotional support then and in the months and years that followed.
Compile and retain a copy of all medical reports and imagery: Collect all relevant medical records from past exams and request copies of the imagery on CD from each hospital’s release of medical information department. When going to each new test/procedure, request a copy of the report and imagery at that time itself. It may be given to you in that appointment or mailed to you later, but standard to be provided for you to retain in your personal records. Carry these records to all doctors/institutions you are seeking opinions from, but never leave behind one of your original copies. The doctor will be equipped to make a copy and return the original to you.
Understand your insurance coverage: At an already overwhelming time, a lack of clarity around coverage and expenses can cause much unnecessary additional stress. Familiarize yourself with your plan and possible options for lower costs (e.g., the same blood test or scan conducted at a local lab may be much less expensive than in a hospital), and don't sign financial liability forms without fully understanding them and recognizing what other options exist. According to a 2018 survey by Policygenius, only 4% of Americans are able to correctly define all four terms that determine how much they would personally have to pay for medical services and drugs they receive under their health insurance plans.
Take time to find the right locus of care: Though psychologically, you and your loved ones will want to move to treatment as soon as possible, there is longer term value in taking the time to reasonably slow down and do your research to assess the right treatment plan and medical team. As many doctors reminded us, when it comes to breast cancer at least, days don’t matter, months do. Ultimately though, weeks are a grey area so take the necessary time, but be efficient when doing so.
Take control of your own medical fate: Do your own research, find the doctor with the narrowest and deepest expertise for your specific case, get a 2nd (maybe 3rd!) opinion, and don’t be shy about asking questions. Seek guidance from people who have been in your shoes before to understand what questions to ask and what they would have done differently.
Ultimately, however, you have to put your trust somewhere and in someone: The problem with being over-educated and comfortable with data is that it’s easy to get caught up in a never-ending cycle of research and second-guessing. We reached a point where we were reading and comparing the details of clinical trials to essentially identify our own treatment plan, only to further confuse ourselves since no perfect data exists for what we needed to know. Eventually, the science becomes an art and you have to trust that your medical team is competent and acting in your best interests.
Stay positive and be thankful: Step back and identify the silver linings in your story. Recognize what you have to be thankful for, what you have to fight for, and ultimately, what you have to live for.
I have personally counseled dozens of family members, friends, and strangers during their own health journey based on my experiences and learnings. By sharing this list, I hope to help many others take control of their own patient experience, and as a result, possibly their health outcome.
Today is the day to take control of your health: We’re never too young or too old to start exercising more, sleeping more, eating healthier, and stressing less. As my mom always says, how we treat our mind and body today is what we’ll reap in 10 years.
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Mother. Warrior. Storyteller.
Parul is a healthcare executive and cancer survivor turned professional speaker championing health, resilience, and a positive mindset. As the Founder & CEO of Silver Linings, Parul combines her experiences as a young working mother diagnosed with breast cancer in her early 30s, a caregiver who transformed her parents' lives with her patient advocacy, and a businesswoman with 15+ years of experience in management consulting and executive roles in consumer, technology, and healthcare companies. Parul's mission is to improve the state of healthcare by sharing her experiences, and inspiring others to live a healthy, thankful, and fulfilling life. She has shared her personal story through her cancer blog that's been read in ~80 countries, films on survivorship and mindset, TV and radio segments, podcast interviews, and public speaking engagements. More information about her story, speaking topics, and portfolio of work can be found at parulsomani.com.
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