How to Be an Empowered & Effective Fertility Patient

When faced with fertility struggles, people rarely feel empowered or effective. Infertility challenges everyone. Regardless of who you are and how you are trying to build your family, if it’s not happening easily, it’s frustrating and difficult! So how can you communicate your preferences, concerns and questions more effectively to your Care Team and feel like you're being heard and understood? Let's explore some ideas together.

Note: In any conversation, communication needs to go both ways! In the third part in this series, our fertility care team (including doctors) reveal their thoughts about fertility patient do's and don't and ways to be an effective patient. You may be surprised by their responses!

In this article:

• The Universal Truths of Infertility
• Feelings Are Not Facts
• You Are the Most Important Member of Your Team
• How to Be an Empowered & Effective Fertility Patient
• Fertility Patient Do's
• Fertility Patient Don'ts
• Your Voice Matters
• Health Care Providers Respond
• More Fertility Advocacy Resources

The Universal Truths of Infertility

I’ve yet to meet anyone who feels thrilled to be faced with not being able to become pregnant when they’re ready, or carry and deliver a healthy baby. Another universal truth is that infertility can elicit long held beliefs in ourselves as well as form new, sometimes unwelcome ones.    

I can't tell you how many times I've heard these phrases from fertility patients:

• “I feel broken.” 
• “I’m ashamed that I can’t do the thing my body is made to do.” 
• “I’m exhausted!” 
• “No one understands.”  
• “I’ve never been this needy in my life.” 

Those were phrases that I used throughout my own fertility journey as well. Phrases that I’ve heard (literally) thousands of times over the past three decades. These feelings wound us, causing emotional and psychological pain. These feelings can cause a disconnect for many patients, making you feel like you're not the most important member of your fertility treatment team.  

Want free, one-on-one fertility support from someone who understands? Email me to connect!

Feelings Are Not Facts

Those feelings we just mentioned? It's important to remember that they are also not facts. Feelings can be experienced, then looked at squarely in the face, and shifted.

There are some helpful articles on our Learning Center that I recommend reading! They talk about how to address these feelings with tools that are effective and provide a welcome relief to these very oppressive ways of seeing ourselves when we experience fertility struggles. Here are a few suggestions:

• How to Manage Stress During Fertility Treatment
• 10 Ways to Take Back Control On Your Fertility Journey
• Tired of Trying to Get Pregnant? How to Manage Infertility Exhaustion
• Tips for Maintaining Relationships During Fertility Treatment

You Are the Most Important Member of Your Team 

My goal in writing this piece is to help you become a more empowered and effective patient. To help you own that place of being the most important member of your fertility treatment team. You. Not the doctor. You.  

While your doctor focuses intently on your medical care, you are the only person who can focus on you, as a whole person. You are the only one who can tell your team when you need more help. You are the only person who can tell your team when a procedure or a medication or a test has caused concerns or pain. 

Without you fully participating in your care, your team is at a disadvantage. They are working in the dark.  

So, why am I even talking about this?  

Because of the fear so many of us have - the fear that if we are not “good” patients, we won’t get the best medical treatment possible. Does the term “good” seem condescending? It may, and for that, I am sorry. It’s in quotations for a reason!

Feeling overwhelmed? Here's why:

How to Be an Empowered & Effective Fertility Patient

We must acknowledge that each of us has our own personality, and our own response to the stress that trying to build a family causes. Some of us become louder, some quieter. Some of us ask ninety two million questions, some of us ask nothing at all. Some of us let our health care providers know about every pain or discomfort we experience, while some end up in the Emergency Room before anyone knows there’s a problem.  

Is there a meeting place between you (the patient) and your Care team? Are there ways of communicating and participating in your own treatment so that you are your own best advocate? Yes! Let's talk about them.

Fertility Patient Do's

1. Tell your fertility team when you are unhappy 
2. Let your fertility team know the best way to reach you, if you want them to leave a message, email, etc.
3. Ask what constitutes an emergency, an urgent call, or a trip to the ER 
4. Find out if you have insurance benefits - if your insurance company has a patient advocate, speak with them about your coverage in addition to the finance person at your fertility practice 
5. Ask for an overview, as well as the details for your treatment cycle 
6. Tell your team when you will be unavailable (vacations, teaching schedules, etc.) 
7. Recognize that your team can accommodate some aspects of your schedule, but not necessarily all
8. Be open with your team about your preferences (i.e. early mornings are better, Fridays are impossible, etc.)  
9. Build a relationship with your team - from the very beginning
10. CC everyone on your team in email correspondence 

Now that we've talked about what to do to feel more empowered and effective as a fertility patient, let's discuss some things to avoid as you navigate your journey to parenthood. 

Advocacy experts share their tips:

Fertility Patient Don'ts

1. Wait until you’ve reached the boiling point of frustration 
2. Assume anything (if you’re not sure, ask a question)
3. Hesitate to reach out for support from your team
4. Worry that your fertility team won’t work hard for you or care about your outcome
5. Raise your voice when trying to communicate - screaming and swearing aren’t received well by anyone  
6. Forget that your team works very closely with each other
7. Hesitate to recap in writing what was agreed to in a conversation 
8. Let yourself feel like a burden - your Care Team truly wants to help you
9. Keep your concerns to yourself
10. Lose sight of your end goal

Reminder: Don't go it alone! Illume Fertility offers free, virtual support groups to help you connect with others on a similar path - explore our offerings here.

Your Voice Matters

Struggling to grow your family can make you feel powerless. So it may seem like a particularly difficult time to be empowered. But it is absolutely possible - and critical to establishing, growing and maintaining relationships with your healthcare providers and getting the best treatment and outcomes possible.  

The most important thing you can do on this journey is become your own best advocate. Ask for what you need, reach out for support, and communicate frequently with your Care Team. While it may be difficult to see sometimes, they all want the same thing you do - for you to achieve your goals.

Pssst! In an upcoming article, we'll be sharing tips and guidance from other fertility advocates in the community to help you find the best ways to advocate for yourself - don't miss out.

Health Care Providers Respond 

Knowing how your health care provider feels about these tools of empowerment might ease your mind about using them! Being an effective team means speaking the same, agreed upon language (i.e. the "language of infertility"), setting expectations on both sides, and taking steps to build relationships with mutual trust and respect.  

In Part 2 of this series, we ask veteran patient advocates for their tips, and in Part 3, we go straight to the source and speak to board-certified reproductive endocrinologists and other fertility care professionals about which of these ideas can be most effective and helpful in furthering communication and collaboration amongst all your team members.  

Want to get inspired?

More Fertility Advocacy Resources

Want to learn more about advocating for yourself or others on a fertility journey? Check out these articles and videos to find additional support and resources.

• Part 2: 20 Experts Share Ways to Advocate for Yourself On a Fertility Journey
• Part 3: A Fertility Clinic Team Reveals Their Best Tips for Patients
• Finding Support: Fertility Treatment Grants & Resources
• Every Story Matters: Fertility Patients Share Their Journey | NIAW 2022
• Infertility Advocacy Day: Why It Matters & How to Get Involved
• [VIDEO] Stopping the Cycle of Negative Thoughts
• Integrated Fertility & Wellness: A Holistic Approach to Family Building