No one wants to be seen as the "problem patient." We fear that if we ask too many questions, need too much help, have a complaint, or need reassurance on our fertility journey, that we will be seen as needy or annoying. We may even worry that we'll get lower quality care instead of the professional and humane treatment we deserve. So how can we advocate for ourselves to ensure we're getting the best care possible?
Keep reading for 20 actionable tips straight from experienced fertility advocates - and don't miss Part 1 and Part 3 of this series about being an effective and empowered patient, which includes perspectives from health care providers on what they want and need from us as patients!
As a 30-year veteran in the advocacy community and Illume Fertility's dedicated Patient Advocate, I am honored to now call many amazing fertility advocates my friends. These people are just as passionate about family building as I am. So, to add more perspective, I asked them to share the most important things fertility patients should know about being empowered and effective as you begin, continue or shift your family-building journey.
Let's start by exploring one of the most important pieces of your fertility journey - interacting with your Care Team. Finding the right provider is one hurdle, but learning how to communicate effectively and navigate the process is another! Here's what fertility advocates recommend you keep in mind:
International best-selling author, speaker and coach Frances Jones says that one of the most important ways to advocate for yourself is to be invested in your own care and not be afraid to push back or ask questions when a diagnosis or treatment plan doesn't feel quite right:
When it comes to being cared for as a patient, you have to be more invested in your well-being than anyone else. If a medical professional gives a diagnosis or recommends a treatment plan you don't understand or agree with, it is your duty to yourself to ask questions, vocalize any concerns you may have, educate yourself by doing research, and understand that the medical professional's opinion doesn't have to be the final say in your situation.
Visit Frances' website for more wisdom, and check out her book Overcoming the Emotional Stigmas of Infertility. You can also watch an instant replay of my conversation with Frances on Instagram Live.
E-Beth Marshall combines her business background and firsthand experience with infertility in her work as a grassroots advocate for community awareness and legislative change for those facing infertility in Arizona. Here's what she suggests:
If you're just starting out with a new clinic, ask either the practice manager or your doctor how the clinic communicates with patients and what the expected turnaround time is for results or updates. This tells you the best way to communicate with your clinic's team and know what the expectations are for timing. For instance, if you know that when you have a blood draw, you should expect a phone call after 2pm (but not before), this will help ease some anxiety.
Another thing I want to remind you is that you are your #1 best advocate. No one knows your body better. So if you are unsure about something, ask questions! Nothing is too stupid or unimportant. In this journey, so much is out of our control, but you advocating for yourself at the doctor's office is one way you can have some control.
Follow E-Beth on Twitter to learn more about her advocacy work.
Kourtney Bennett, an infertility and PCOS advocate, encourages you to keep looking until you find the right fit with a healthcare provider who is truly engaged in your progress and provides the level of care you deserve:
Be your own advocate. Do not take less than what you feel is adequate information on how you are feeling. It is a doctor's job to provide you with the information you need to best serve and take care of YOU. Ask questions, and ask a lot of them. If the doctor doesn’t seem genuinely invested in you, do not be afraid to find another doctor!
Most PCOS patients go through a minimum of three doctors before finding the right one that fits them. Do not be afraid to have to start over - sometimes, that’s the best thing that can happen to you.
Follow Kourtney on Instagram or connect with her on Facebook.
PCOS advocate and media personality Renetta DuBose offers this wise advice:
Walk in the room like you own it. Actually, you do because you are the one paying them. It is your body and you know it best so yes, you have the power to accept or reject any medications or treatments. Remember, it’s called practicing medicine for a reason.
Follow Renetta on Instagram and Facebook! You can also watch a full video replay of one of our advocacy roundtable events featuring Renetta alongside Dr. Ilana Ressler, Ashley Levinson and Monica Moore here.
Remember: You can always ask for clarification. You can say it’s not a good time for you. You are allowed to be human. Jennifer White, owner and director of Bright Futures Families, gives specific tools to use when you’re not at your best or feeling overwhelmed by the information you're hearing from a provider:
There’s often a misperception from the patient side that a person must always be at peak ability to absorb information. We’re all human. Sometimes a patient could be absorbing the last sentence and miss the next, distracted by something that occurred earlier in their day, or simply hungry or thirsty and not able to be receptive.
It’s completely in bounds to say: 'I am not able to absorb what you are saying right now. Can you please [put it in writing so I can review later; give me another call; go over it again right now but in different words with less jargon, etc.”] convey this information to me in a way and time I am able to receive it? If you don’t speak up, the provider is going to assume that you heard and understood everything. This very simple communication can do a lot to put the provider and patient on a more level playing field.
Explore Jennifer's work and get to know Bright Futures Families on their Instagram or website.
With years of PCOS personal training and coaching under her belt, Ginny Silvestro, owner of Body Enhancing Fitness, suggests being proactive and educating yourself before meeting with your healthcare provider:
As a patient, sometimes you are your only advocate. Before going into an appointment, think of any questions you may have for the doctor and write them down. Sometimes nerves can get the better of you while you’re in with the doctor, and believe me no question is a bad question. You don’t want to leave an appointment unsure and unable to understand your situation.
Secondly, don’t be afraid to ask a doctor to stop or slow down, or break down information you don’t understand. If you feel resistance, then that office may not be the right fit for you. A solid doctor will take time for the patient and not rush you to get to another appointment. You need to not only feel listened to, but empowered by the knowledge you are being given.
Follow Ginny on Instagram for great PCOS and movement tips!
Infertility steals our sense of control and often leaves us feeling powerless. How do we flip the script and empower ourselves as we navigate this journey? Here are some great ideas:
Andrea Syrtash, creator of pregnantish, which offers resources, education and community to those struggling with fertility, says that one of the most important things you can to is simply speak up:
At pregnantish, we surveyed over 1000 patients and learned most do want to be partners in their treatment and advocate for themselves, but don’t always know how. Nobody knows your body and heart like you do, and if something doesn’t sit right, or if you need more information or clarification, it’s essential to speak up.
For those on a fertility/infertility journey, having a baby is literally one of your highest values and costs a lot (and not just financially) so don’t ever feel you’re asking too much. Your goal is too important.
Visit pregnantish's website or follow them on Instagram or Facebook to get connected!
Celebrated writer, comic and infertility advocate Jennifer "Jay" Palumbo suggests finding ways to educate and empower yourself on your fertility journey in order to take back some of the control we feel we've lost:
There are so many aspects of infertility that are out of our control. However, taking an active part in our fertility treatment isn’t one of them. Instead, educating yourself about your options, whether it's IVF, genetic testing, ICSI, donor eggs, donor sperm, or something else, reminds you that sometimes, the question isn’t IF you’ll be a parent…but HOW you’ll become a parent.
Follow Jay on Instagram and visit her website to learn more about her writing and advocacy work.
Davina Fankhauser, Co-Founder and Executive Director of Fertility Within Reach, reminds us that learning to self-advocate won't just serve you as a fertility patient, but well into parenthood and throughout your life:
The end goal is to have a child; transitioning from patient to parent. The fact is, we will need to advocate for our child(ren) as they grow. Advocating for yourself and your fertility healthcare is a great way to prepare you for parenthood. Please take advantage of the many opportunities to develop your advocacy skills and support policy that is pro-fertility healthcare.
Follow Davina and Fertility Within Reach on Instagram and Facebook for more advocacy resources, fertility legislation news, and how you can get involved.
Whether you're on a personal fertility journey or simply want to help other families get access to the fertility and family-building care they need, your voice matters! One way you can advocate is by asking your employer to offer fertility benefits. RESOLVE: The National Infertility Association has all the tools you need to get started:
At this moment, no one cares more about this issue than you, and RESOLVE has the information, tools, and support to help you via our Coverage at Work program. If your family building options are not covered through your employer’s healthcare plan or other employee benefits, why don’t you ask for that to change? In some cases, employers are not aware of a gap in their insurance coverage and benefits package until an employee has advocated to change it. It all begins with making the initial ask.
Want to dive deeper? Check out RESOLVE's website, Instagram and Facebook for more information.
Feeling alone in all of this? Like you’re the only one going through the pain and frustration of trying to conceive? Listen to what Kate Weldon LeBlanc, Executive Director of Resolve New England, has to say about the benefits of peer support:
To me, empowerment comes from being nurtured, informed and respected. So an empowered fertility patient needs to have their emotional needs addressed and to feel comfortable asking questions of your providers (bring a notepad to every appointment!), among other things.
I am a strong believer of the importance of peer support, like those offered by our free, virtual Resolve New England groups. Support groups like these help you to recognize that, though your own family building experiences are unique, you are one of countless people going through this. You are part of a broader community of people who can relate to and help you.
Follow Resolve New England on Instagram and check out their website for more resources.
While some of these may seem like no-brainers, they're easy to forget when you're feeling overwhelmed or confused by all the information being thrown at you. Remember: you know your body best!
Fertility patients aren't the only ones who need to advocate for themselves! What we learn while we’re trying to build our family will serve us our entire lives. Infertility advocate and author Sue Ann Johnston shares how the advocacy skills she gained as a fertility patient helped save her life later on:
I know my body better than anyone, and I can tell when I am just not feeling well. In August of 2021, I had a major surgery to repair a very large hiatal hernia. I was told that I'd experience chest pain and could have difficulty breathing after such an extensive surgery, however, my symptoms never went away. I continued messaging my thoracic surgeon to let him know how I was feeling, but he explained that it was all within the normal range.
Finally, I decided to reach out to my primary care provider and explained what I was feeling. Instead of a telehealth meeting, she asked to see me in person. After running many tests, she determined that I most likely had developed pulmonary emboli. She immediately ordered a CT scan, which indicated multiple pulmonary emboli in both lungs. If I hadn't advocated for myself, I don't think I'd be here today to share my story.
You can follow Sue Ann on Instagram or check out her website The Infertility Advocate for more.
Reproductive justice activist Brooke Kingston offers a unique perspective as a former fertility patient who ended up making the decision to stop treatment and focus on advocating and supporting others in the reproductive health space.
Her choice to not move forward with IVF is a great lesson in advocating for your own wellbeing, and knowing when enough is enough. Here's what she learned:
I'd been charting my cycle since before we started trying to conceive, so I knew I didn't have a textbook 28-day cycle. When it came time to ask for testing from my OB/GYN, that was incredible information to have because if I'd had bloodwork on Day 21, it would have been a waste of time and money. We also had plenty of time to contemplate what we were willing to do in regard to treatment - our lines in the sand. Ultimately, we were given IVF as our only option - even after trying to improve conditions - and that wasn't something we could do, particularly financially.
We walked away with a decision to heal as a family of two, and I've spent the last 10 years advocating for patients to have affordable access to infertility care and treatment. Reproductive justice has been my passion and outlet, as I not only volunteer with RESOLVE, but also as a patient escort at healthcare facilities providing abortion care.
IVF mom and infertility advocate Angela Bergmann offers this great reminder:
My biggest advice is always to remember that you are paying for a service and to never let your medical team intimidate you. Doctors are human beings just like the rest of us and we should approach them in that manner. You should ask questions of them and feel satisfied by their answers. Good doctors want to answer their patients’ questions and make them feel at ease. You aren't being a burden by demanding amazing care.
Follow Angela on Instagram for a peek at her adorable little family!
Nikki Wehmeir of Genesis Egg Donor & Surrogacy Group echoes the advice of other fertility advocates, and also encourages patients to seek a new healthcare provider when needed:
Don't forget that you are an important partner on your healthcare team and nobody knows your body as well as you do! Do your research, get more than one opinion, and choose a medical facility that is the right fit for you.
Nobody is more invested in this process than you, so don't be afraid to speak up, ask questions, and be a part of the conversation...and remember it's okay to switch to new care when you don't feel like you are being heard.
Learn more about Nikki's work as Egg Donation Program Director at Genesis Egg Donor & Surrogacy Group!
Jennifer Redmond, fertility coach and Chair of Resolve New England, echoes the advice of other fertility advocates, encouraging patients to prepare before appointments, ask lots of questions and try to stay present:
Brainstorm a list of questions to ask your doctor, with your partner, if applicable, and bring the notebook or tablet to the appointment to write down the answers. What information would be helpful? What do you not understand? What are your concerns? Take several deep breaths before the appointment to ground yourself, gather your thoughts and feel present and confident.
Learn more about Jennifer's work by visiting her website and Instagram!
Now that we've covered how to feel more empowered and how to communicate effectively with your Care Team, let's get into some actionable ways to prepare for and navigate the experience. Here's what advocates suggest:
Another way to feel more empowered is to make sure you organize your thoughts and questions ahead of time, so you're not scrambling during your appointment or regretting a forgotten question afterwards, says Jenifer Gutke, PCOS patient and founder of everyPCOSbody:
I always write out all my questions and topics I want to talk about in my notes on my phone. I say to my doctor, 'I have these things I’d like to go over, if that’s okay,' and we go over each item and question. This helps me feel empowered to ensure I have all my topics covered, and every doctor I’ve done this with has welcomed it.
Follow Jeni on Instagram and Facebook for more PCOS and patient advocacy tips!
Sharon LaMothe, Director of Pacific Cascade Surrogacy, Founder of LaMothe Surrogacy Consulting, surrogacy and third party family-building educator/advisor, and co-author of Surrogacy Helps Make a Family Grow, recommends doing some research ahead of time so you can discuss your desired outcome or method in an effective way:
I think that one way to be confident when going into any medical situation is to do your research! If you know what to expect, what others have experienced, and have an idea of what you want your outcome to look like, it will be easier to get medical staff and doctors to take you seriously.
Coming to appointments with a list of relevant questions and following recommended procedures also builds confidence in you as a patient who is willing to put in the effort towards their own treatment.
Follow Sharon on Instagram to learn more about her work in the surrogacy and family-building space!
Fellow fertility warrior, mom and advocate Brooke Oveson Walrath suggests targeting your research and locating the right (peer-reviewed) resources and support so you don't get overwhelmed trying to comb through the vast amount of information out there:
Being an effective patient means digging in—not just doomscrolling endlessly through search results, but learning how to find the best information for you and your circumstances. It means speaking to others who’ve been down the paths you’re interested in and getting as much perspective as you can.
Especially with chronic and other long-term health issues, it means accepting that there is no silver bullet while opening your heart and mind to hope that even some improvement is better than none. It means working to love yourself and listen to your body’s needs.
As a former Congressional and presidential campaign staffer who is now a government affairs consultant, infertility advocate, and IVF mom, Georgette Kerr learned that one of the best ways to empower yourself and work well with your provider is to prepare for your fertility appointments by doing your own research and asking about all your potential treatment options:
When I was going through IVF, I would type up a list of questions and send them to my REI ahead of our regroup meetings. I felt like this really sent a signal to my provider about the types of concerns I had and the thoughtful and thorough engagement I was expecting. My doctor actually gave me feedback that this exercise made us both more prepared for our meeting, maximized the value of our time together, and made us a better team throughout my cycles, because it allowed both of us to feel that we had all our bases covered.
Similarly, I also shared a lot of cutting edge research with my REI that I picked up from various support groups on balanced translocations that I thought might be relevant to our case. Throughout my family-building journey, I have shared studies I wanted to discuss to my REI in advance of our meetings. My REI was able to explore the study protocols with both the lab at my clinic, as well as with other outside experts, before we spoke.
While I was disappointed to learn that one study that seemed like a silver bullet for us would be nearly impossible to replicate in a clinical setting, giving my REI plenty of time to do her research allowed her to come back to me with an alternative plan for protocol changes that resulted in our best cycle yet!
You can follow Georgette on Instagram, Twitter and Facebook to learn more about her and her work.
We know you're juggling a lot: appointments, medication regimens, hormonal shifts, emotions, finances, scheduling, planning next steps...the list goes on and on. Being a fertility patient is no walk in the park! However, learning to be your own best advocate will empower you, not only now, but in the future.
Our hope is that the wise words of these experienced fertility advocates will offer some helpful ideas for navigating your own journey and ensure you receive the care and respect you deserve throughout your entire experience. You should always feel that your concerns and questions matter to your healthcare provider - and if you don't feel that way, keep searching until you find the right fit!
Conversations and relationships should include ALL the people involved. Because that's the point, right? Beyond all the procedures, fertility treatment protocols, medical records, systems or operational concerns, each relationship really comes down to the people in it.
And health care providers are people too - sometimes we forget that!
So what do your health care providers want from you? What do they need from you to co-create the best provider/patient relationship possible? We know what we want from them - excellent clinical expertise, compassionate attention, fast response times and more.
But how can we participate fully in the relationship so that we both understand what is needed on either side?
We went right to the source to get answers, asking board-certified reproductive endocrinologists, fertility nurses, patient navigators, and other fertility care professionals. We asked the question: what makes an empowered and effective patient and how can a patient work best with their team? Their answers may surprise you!
Want to learn more about advocating for yourself and others while on a fertility journey? Check out the following resources to find additional support or read success stories to find hope and inspiration!