A Guide to Self-Advocacy in Healthcare: Expectations and Empowerment
We’ve all felt intimidated walking into a doctor’s office. It’s a vulnerable experience, fraught with expense and sometimes discomfort and fear. It can be smoother and more successful when we have clear expectations before we even make the appointment. Here are nine things we can do to make healthcare experiences more comfortable and less nerve-racking.
1. We are not supposed to know everything. We all aim to be as enlightened as possible about our bodies, but most of us didn’t go to school to study human anatomy, physiology, or medicine. Medicine is a vast and ever-changing field, and it can be perplexing. Since physicians have studied it at length and may use medical terminology we don’t understand, it’s easy to feel too intimidated to ask for clarification. We need to push through that sensation or bring someone with us who can. Also, doctors are very busy, and their work is important, so it’s also easy to feel like we don’t have the right to interrupt their busy day. We do. We are their customers.
2. We should ask for clarification. Medical terminology is a whole other language and it’s the physician and their staff’s job to translate it in a way that we understand what it is happening to our bodies and what the plan of care is. They might be the experts on the human body, but we are the experts on ourselves. We’re the only ones who know what it’s like to be inside our own bodies and minds.
3. We should do research and ask questions. Come prepared! Patients should review the recent clinical studies with their provider and decide on a testing and treatment plan that meets their unique needs. When doing our own research about our conditions and care, make sure to use reliable resources like the CDC, WHO, or the organization pertaining to the specific body system or condition, like The American College of Obstetricians and Gynecologists or American Cancer Society. As we all know, there’s a LOT of unreliable (and fear-based) information online, so be mindful.
4. We should have a patient advocate. When we’re sick, injured, or afraid, it’s often hard to keep our thoughts in order or speak up for ourselves, so having someone there with us is critical. Also, it helps to have an ally listening and asking questions when instructions are given to ensure we don’t miss anything. If it’s impossible to have an ally there in person, we can set it up so that we have them on the phone or capture a voice recording while we speak with our provider. Obviously, always make sure anyone being recorded is notified.
5. We should use translation services and additional accommodations when needed, to make the visit more comfortable and effective.
Even if we are generally proficient in the language spoken by the medical provider, terminology is a whole other language that we don’t typically use in everyday life. Every medical space is required to have translator services to bridge any gaps between provider and patient’s communication and understanding.
Need more comfortable seating? Better access to exam tables? More privacy in the waiting room? These are reasonable requirements and need to be met. It is our legal right to meet with our providers in the most barrier-free way possible and without discrimination.
It can feel like a hassle to request additional services but there is more at risk here than an appointment going a few minutes over or a bit of embarrassment. It’s always worth mentioning our specific needs- ideally when the appointment is made so the facility has time to adequately prepare.
6. We should be choosy about the provider and ask for additional opinions when needed. Having professional chemistry and trust in a provider is essential. Although, again, it might be awkward in the short-term to request a change, finding someone who clicks with us is the right long-term choice. Medicine is a science and an art, and although there are efforts to promote standards of care, there’s still room for interpretation and we want someone whose perspective we trust. This may require interacting with the insurance company, which can be its own kind of obstacle, but this is part of advocating for ourselves.
7. We should expect to be seen, heard, and understood. Unfortunately, many women have had experiences as patients where they were made to feel like they were wasting the doctors’ time or annoying them, or they just didn’t care about what the patient was saying. Not only is it dangerous for a provider not to care what their patient has to say about their own health and care plan, it can leave emotional scars. We all deserve to be heard and respected and our concerns should not be dismissed. Breaking up with a healthcare provider or insisting on a second opinion can feel scary or rude, but it can save us from a lot of pain and trauma.
8. We should trust our gut. If something seems confusing or wrong, we need to say something. Get a friend to hold our hand and speak up with us when it’s hard to do on our own. If we feel like you’re being ignored or pushed around, it’s likely because we are. Trust our gut. Most facilities have patient advocates or social workers who can assist us in being treated appropriately. If we question whether the provider is safe to care for other patients, there are ways to notify the governing bodies, as well
9. We can’t be afraid to be “difficult.” So many of us tend toward people-pleasing and not rocking the boat, or have anxiety that makes communicating challenging, especially in high-stress situations. This is where going into the visit with a script, a list of questions, and/or a patient advocate can really help.
Healthcare should be a team effort that maximizes our health and understanding of our bodies. There are many great providers who are eager to have this kind of collaborative patient care relationship. We are optimistic for the future of medicine as an emphasis on communication and empathy is being taught in medical school now more than ever. Providers are expected to show up competently and compassionately for their patients and we patients need to know our rights and have clear expectations in order for us to have the empowering and optimal healthcare experiences we deserve.
Sarah Zimmerman is a freelance writer in Northern California and is working on her first novel. In past lives,, she has been a Physician Assistant in Women's Health and the owner of a vegan ice cream business. Sarah writes about marriage, sex, parenting, infertility, pregnancy loss, social justice, and women's mental and physical health, always with honesty and humor. She has written for Ravishly, Cafe Mom, Pregnant Chicken, and more and can be found at sarahzwriter.com and on Medium, Twitter, Facebook, Instagram and TikTok at @sarahzwriter.