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Six easy (or not so easy) ways to be your own advocate

Six easy (or not so easy) ways to be your own advocate

7 min read

Seeking medical care can be an overwhelming experience. There’s nothing quite as vulnerable as baring it all, literally, in an examining room. The Institute of Medicine recommends a practice of patient-centered care, which they define as, “providing care that is respectful of, and responsive to, individual patient preferences, needs and values, and ensuring that patient values guide all clinical decisions.” A doctor’s office is supposed to be a place of comfort and care. But what happens when that’s not the case? What do you do? How do you speak up for yourself?

We turned to some of our readers for their advice and broke it down into six simple (or not so simple) ways to set yourself up for success as your own advocate.

Number One: Find a Support Group

“At some point, you feel a little beaten down. That's when you find your strength. We left the first fertility center after six months. I felt that they were very misleading on how the process went. After joining [a support]group it was nice to see other people felt the same.” (Danielle, Massachusetts)

Danielle, a hairdresser and salon owner, felt like the cards were stacked against her from the start. As a plus-sized woman in an LGBTQ relationship, she encountered barriers everywhere. Navigating health insurance kept leading to more dead ends and costs. Questions about how her weight might be impacting her fertility felt overwhelming, and at times, quite unnecessary. Although she kept testing negative for gestational diabetes, the test kept coming. Fertility treatments — and the cost of sperm — kept adding up.

Danielle felt alone in the process of advocating for herself.

Her advice to others? Find a support group. “Being able to ask the group about an upcoming appointment and having questions to ask the doctor makes you feel like you are in the game, not just watching it," she said. Having other people tell you about their experiences and what they might have done differently shapes the way you may experience your appointments.” Danielle didn’t consider herself an online-group person, but she found the advice and the comradery of a Facebook group for expecting and struggling LGBTQ parents to be invaluable.

Number Two: Trust yourself.

“If something doesn’t feel right, don’t trust it. Fight it. Ask questions. Keep pushing.” (Ani, Portland)

As an RN, Ani is used to navigating patient-doctor relationships, but usually from the side of the medical professional. She admits there’s nothing more frustrating than a patient coming in and claiming to have done the “research,” but really just citing something they saw on TV or the top of their Google search.

When she was pregnant with her first child, however, her perspective shifted. She started to stand her ground, pushing back because it wasn’t just about her, but about her and her baby. The knowledge that she wasn’t alone, but it was her and her daughter, brought out her “mama bear” tendencies early on. She was no longer willing to sit back and be passive in treatment plans, she felt the need to advocate for herself and for her fetus. In this way, being pregnant taught Ani to trust her gut about her treatment; she knew when something wasn’t right. Ani’s advice is to trust your feelings, to ask more questions, and to push for more tests,even if you’re afraid you’ll come off as demanding.

Number Three: Educate Yourself

“I have a very healthy respect for anyone with MD/PhD after their name, but that doesn't mean I don't want to educate myself (properly, with peer-reviewed sources) on those topics. I want to understand my own body. This has given me a lot of confidence while in conversations with doctors. I can enter into a conversation with them about my issue, as opposed to being a spectator in my treatment.” (Kat, Oklahoma)

Kat, a professor, found her voice after realizing her doctors weren’t listening. After a miscarriage, she had questions about how her prescribed treatment matched (or didn’t match) what she was experiencing in terms of her cycle. As a scientist, she turned to data and hard facts: she began tracking her ovulation and how she felt each month.

“I started charting my cycle, recording as much data as I could about my own body. I realized I could feel ovulation happen and that, in conjunction with my other data, showed that I was ovulating late in my 28-day cycle (like day 21-23). This made me wonder if I was getting pregnant but that my body was never really aware that I was pregnant before my cycle started.”

The data helped her decide that her doctor’s advice — to wait and see if a pregnancy would occur without any medical assistance — wasn’t working for her. She needed to take matters into her own hands and made an appointment with a fertility doctor. She advocated for herself in finding a fertility specialist, showing the data, and holding firm in her belief that something wasn’t right. The specialist prescribed supplemental progesterone and worked with Kat and her husband to get to the bottom of what was (and wasn't) happening with their fertility.

Kat’s advice is to educate yourself. Start with what you can learn from your own body - track your symptoms, your cycle, record everything you can around what you’re doing, eating, and feeling. Tracking symptoms and her cycle gave Kat the insight needed to take control of her fertility. She’s now the proud (and very busy) mother of four healthy kids.

Number Four: Build a Relationship with your Doctor

“I felt like I was asking all the right questions and getting treated like I knew nothing. I’m from a family of doctors. My dad's girlfriend is an OB, I was totally asking the right questions. It’s actually something the fertility specialist mentioned as a reason she loved me as a patient. I asked educated, well-researched question so we could have nuanced conversations about my choices.” (Rebecca, New York)

Rebecca and her husband found themselves being ignored by doctors - partially because they were considered “too young” at 28 and 35 to be seriously worried about infertility. Her first doctor didn’t even want to test Rebecca’s husband to see if any of the fertility issues were related to his sperm, but instead told them to keep trying before considering more testing. Rebecca wasn’t willing to wait it out, so she started doing her research,both in terms of finding a new doctor and exploring options for tests and treatment. The more she learned, the more questions she asked.

It wasn’t always easy, but when she found the right doctor, she established a frank relationship. She pushed back, asked clarifying questions, and leaned into her respect for her doctor. Her advice is to find the doctor who values your questions.

Rebecca is now in the middle of a healthy pregnancy; she still talks to her fertility doctor as a friend and confidant because of the relationship they created.

Number Five: Take Your Time

“It's about trusting your own intellect. If it's not a huge emergency, the doctor should be able to explain the pros and cons to you in a way that allows you to make a decision that you're comfortable with. If there is a judgment call to be made, and all the options are safe (at least for the time being) then you should get to make the choice you want to make.” (Emily, Pennsylvania)

Emily’s pregnancy was high risk; she was carrying identical twins. When she went into labor, one baby was head down, and the other baby was transverse, or laying horizontally. After being in labor for six hours the doctors on call told her it was time for a C-section, but only because they weren’t trained in delivering a breech baby.

“This all seemed a little premature to me," Emily said. "How could they know which way the baby would flip? I was angry that no one on call could do the breech extraction. It seemed random and cruel that I could have to have major surgery because they stopped training doctors to do this procedure 20 years ago. So I just said ‘nope’ and that I would wait and see.”

Emily was glad she waited and insisted that everyone else wait. It gave her the time to consider her options. Her then-wife and doctors continued to urge her to have the surgery, but Emily insisted if it wasn’t an emergency, they would wait. Eventually, both babies arrived safely without a C-section. It’s not always possible, but when it is, remember that you are in control. Ask for the time you need to consider your options.

Number Six: It’s Okay to Quit Your Doctor

“It's a weird power dynamic when you are talking with a doctor. But, the more you can do to feel informed and empowered, the easier it is to stand up for yourself. And, it isn't ok for doctors to make you feel crazy. If you don't feel well, and they don't believe you because blood work says things are normal or whatever, then you need a new doctor.” (Bridgid, Boston)

Bridgid, an educator, struggled with endometriosis for years, with doctors telling her the pain and exhaustion was all in her head. The doctor she was seeing made it worse by questioning what she was enduring.

With the pain worsening, she sought out a gynecologist specializing in endometritis and surgery treatments. From visit one the experience was completely different. The doctor not only offered a diagnosis and a treatment plan, but he also did so in an effective and supportive way. It wasn’t an easy journey. She felt isolated for most of the process, but the new doctor changed things.

Brigid wants you to know is that it’s okay to leave your doctor if they aren’t listening or fighting for you. After advocating for herself for years and being ignored, Brigid was worn down. Finding a specialist meant a diagnosis and the right medicines, but it also meant being treated with respect. It was a difference of night and day.

Trying to take care of yourself can be exhausting. Being your own advocate isn’t easy, but with support, research, the right doctor — and the right relationship with your doctor - you can take your time and trust yourself. Remember that you’re not alone — Modern Fertility is here to help you understand your fertility and hand you the tools and insights you need to work with your doctor. You’ve got this.

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Jordyn Rozensky

Jordyn Rozensky is a writer and photographer living in El Paso, Texas. Their work has been featured on a variety of publications including CNN and NPR. Follow their photography on Instagram @jordynrr.

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