You walk through the doors of the high-risk pregnancy center your OB-GYN referred you to. The care team seems nice enough, but you can’t help feeling that your new team isn’t really listening to you. The doctor downplayed your symptoms, and you don’t think they’re a good fit. What should you do?
Patient self-advocacy means you take an active role in making decisions about your medical care. Self-advocating patients often question diagnoses or treatments and seek second opinions until they are comfortable with their care team.
Studies show that patient health care experiences are strengthened by self-advocacy. Sometimes it can be difficult to find a provider who listens, affirms your experiences and communicates treatment with you. Here are six ways you can be a self-advocate for yourself and your baby.
- Go With Your Gut
Cliche? Yes. Applicable? Absolutely. Your body is the only one experiencing this pregnancy. Sometimes, expectant moms hesitate to share the full scope of what they’re experiencing. If something doesn’t seem right, mention it. Listen to your intuition.
Validate Your Feelings
Don’t let fear hold you back from practicing patient self-advocacy. You and your high-risk pregnancy support team should consider your intuition a legitimate source of information. If you’re unsure how to voice your feelings, you could say, “Something really feels off, and I can’t quite place it.” Together, you and your high-risk pregnancy doctor can discuss what it means.
Expect All-Encompassing Care
You probably expect excellent medical care for your high-risk pregnancy. Those with high-risk pregnancies also experience emotional and psychological stressors. Your health care providers should consider, treat and acknowledge these challenges as part of your overall care experience.
- Come Prepared
Some people may worry their questions are annoying or don’t want to be labeled a difficult patient. Others might dismiss their concerns as nothing serious or be worried they’ll uncover unpleasant news they don’t feel ready to hear.
Make a List
If you’re not sure where to start, use this guide as a starting point. Write down some of your own questions as you think of them. Being prepared with questions before your appointment shows your provider you’re taking your care seriously.
Find Your Voice (And Use It)
If you feel like an annoyance or burden, talk to your health care team about it. You could say, “I feel like I’m always bothering you with my concerns. How can we work together to make things more comfortable?” If your attempt to streamline communication isn’t met with a solution, it may be time to find a new care team.
- Set and Keep Boundaries
Caring for yourself and your baby is your top priority. Setting and keeping new boundaries will look different for everyone, but it’s an important aspect of your self-advocacy and care.
In the Workplace
Before you talk to your employer, discuss workplace adjustments with your health care team. If you had plans to increase your workload in preparation for maternity leave, you may need to rework or delegate to others. If you’re physically active in your workplace, ask your doctor about an appropriate amount of activity. You may want to ask your doctor for a note describing the changes you need to make at work.
Once you and your health care team come up with appropriate parameters for your workplace, you can have an informed conversation with your employer. If possible, come up with suggestions for solutions alongside changes, such as moving hours around or distributing tasks you’re unable to complete. It may be helpful to read federal law regarding pregnancy in the workplace.
Sometimes, the well-meaning inquiries are exhausting. If you feel like you need your own PR team to manage relationships, it might be time to set a boundary.
Ask one close friend or family member to be your point person. Gently explain to your larger group of friends/family/coworkers that they can direct all questions to your point person, who will keep them well-informed and updated on your high-risk pregnancy status.
Adjust Your Social Calendar
You may also need to cancel plans or social engagements. Take a good look at your calendar and prioritize time that helps you relax, recharge and stay healthy. Get comfortable with saying, “We’ll have to find a time for that after the baby is born.”
- Ask for Help
Don’t be afraid to ask a trusted friend or family member to help you with childcare, shopping or household chores. Many people would love to help but don’t know exactly what you need. Maybe you’re even too overwhelmed to start assigning tasks to others, which is understandable.
Whenever you think of a task you want to do but can’t, write it down and start a list. When someone asks you if there’s anything they can do, you can send the list and let them choose which task they can complete. This takes the awkwardness and extra work off of you and empowers your helpers to know what you need.
- Lean on Your Support System
You’re not alone in your high-risk pregnancy journey. Find a support system that uplifts, validates and allows you to tell your story free from judgment. This could be in person or online. Ask your health care team to help you find the right support group for you. It’s ok to shop around until you find a group that fits you and your situation.
If you’re not comfortable with a support group, meet regularly with a professional therapist who can help you process what’s happening. Or lean on friends and/or family members who provide healthy encouragement and comfort.
- Educate Yourself … But Thoughtfully
How many new acronyms have you learned so far? If you feel like you’re learning a new language, familiarize yourself with terms, test names and other lingo regarding your diagnosis. But beware of Dr. Google. The Internet can lead you to helpful definitions, but random searches can also provide inaccurate, unhelpful or dangerous advice. Ask your doctor for credible resources where you can find the information you need.
How Much Do You Want to Know?
Be honest with your health care provider about how much detail you’d like to know. Some people are more comfortable with all the knowledge, even if it’s a pending or unsure diagnosis. Others would rather wait until things are more certain to find out exactly what’s going on. Discuss and determine the best way to communicate with your health care team.
What to Look For in Your Team
Your health care team should recognize that high-risk pregnancy affects every aspect of your life. Your maternal-fetal medicine specialist should:
- Listen to you without interrupting
- Use language you understand and clarify if needed
- Invite and listen to your questions
- Take your concerns seriously
- Offer thorough explanations as appropriate (and desired)
- Provide reassurance and guidance as necessary
- Clearly communicate all of your options regarding treatment and care
- Be open to communicating with other health care providers upon request
- Work with you and for you to provide the best care for you and your family
If your first experience with a high-risk pregnancy center or doctor isn’t serving you, find one that will.
Where To Look
If they haven’t already, your OB/GYN will likely provide a referral to high-risk pregnancy services, fetal surgery services or a high-risk pregnancy doctor. Ask friends or colleagues for doctor or clinic referrals. You can also check out these resources:
If you can talk with someone who has experienced a high-risk pregnancy, ask them about their health care experiences.
Your High-Risk Pregnancy Care
The American Medical Association recognizes the fact that quality health care is a collaboration between patient and provider. You have the right to a respectful health care team that listens to your concerns and works with you. Once you’re comfortable with your high-risk pregnancy doctor, you can move forward together with the fetal medicine services you and your baby need.