I love the wide variety of clients who work with Woven Natural Fertility Care. Maci began learning the Creighton Method with us this year, and she's shared a bit about how becoming disabled & chronically ill has inspired a passion to share knowledge and empowerment with other women. Well, we are 100% on board with that! So we invited her to share some of what she's learned about patient advocacy with our listeners. I know you'll love her heart and her tips!
NOTE: This episode is appropriate for all audiences.
Charting your Fertility with a Certified FertilityCare Practitioner: Anyone can begin learning more about their reproductive health and how to identify root issues. It is never too late to begin this process! We'd love to help you get started by attending one of our Introductory Sessions - an online, virtual class available each month. Join us!
Talk with Caitlin (you do not have to be a client): Need a safe place to talk about your fertility journey, what you're going through (faith, infertility, medical concerns, etc) or anything else about your fertility? Caitlin would love to hear your story and talk with you during a consultation!
This podcast is provided for educational and informational purposes only and does not constitute providing medical advice or professional services. The information provided should not be used for diagnosing or treating a health problem or disease, and those seeking personal medical advice should consult with a licensed physician. Always seek the advice of your doctor or other qualified health provider regarding a medical condition. If you think you may have a medical emergency, call 911 or go to the nearest emergency room immediately. Neither Woven nor its staff, nor any contributor to this podcast, makes any representations, express or implied, with respect to the information provided herein or to its use.
I love the wide variety of clients who work with Woven Natural Fertility Care. Maci began learning the Creighton Method with us this year, and she's shared a bit about how becoming disabled & chronically ill has inspired a passion to share knowledge and empowerment with other women. Well, we are 100% on board with that! So we invited her to share some of what she's learned about patient advocacy with our listeners. I know you'll love her heart and her tips!
NOTE: This episode is appropriate for all audiences.
Charting your Fertility with a Certified FertilityCare Practitioner: Anyone can begin learning more about their reproductive health and how to identify root issues. It is never too late to begin this process! We'd love to help you get started by attending one of our Introductory Sessions - an online, virtual class available each month. Join us!
Talk with Caitlin (you do not have to be a client): Need a safe place to talk about your fertility journey, what you're going through (faith, infertility, medical concerns, etc) or anything else about your fertility? Caitlin would love to hear your story and talk with you during a consultation!
This podcast is provided for educational and informational purposes only and does not constitute providing medical advice or professional services. The information provided should not be used for diagnosing or treating a health problem or disease, and those seeking personal medical advice should consult with a licensed physician. Always seek the advice of your doctor or other qualified health provider regarding a medical condition. If you think you may have a medical emergency, call 911 or go to the nearest emergency room immediately. Neither Woven nor its staff, nor any contributor to this podcast, makes any representations, express or implied, with respect to the information provided herein or to its use.
Caitlin:
Welcome to the Woven Well Podcast. I'm your host, Caitlin Estes. I'm a certified fertility care practitioner with a master of divinity degree. Each episode will cover a topic that helps educate and empower you and your fertility while honoring the deep connection your fertility has with your faith. Let's get started. Welcome back to the Woven Well Podcast. I believe wholeheartedly that it's important for women to understand their bodies and fertility for many reasons. One of those is so that they can advocate for their medical needs. I wish that all doctors were comprehensive, caring and curious, but there are a wide range of medical professionals that we may work with at some point. And honestly, even the best of the best will never know your body as well as you do. So we need to be able to partner with our medical providers to experience the best and most effective care possible. This is a topic of passion for one of my Woven clients, Maci. Maci and I began working together this year as she learns the Creighton system for family planning and medical use. I have loved hearing her heart for empowering other people when it comes to getting the best medical care possible, and so I invited her to share more with us today. Maci considers herself a disabled creator with a passion for shining a light on rare diseases and patient experiences. She's working towards becoming a certified patient advocate to use her own experience to help others. She lives in east Tennessee with her husband, where she attends St . Anne Orthodox Church. Maci, welcome to our show.
Maci:
Thank you so much for having me.
Caitlin:
I'm so excited that you're here. And I know I just gave a brief overview there in the intro, but why don't you share a little bit more about yourself with our listeners.
Maci:
Sure. So like you said, I'm from East Tennessee, born and raised, and I went to Johnson University in Knoxville. It's where I met my husband, which is nice. From there I have two degrees, one in Bible and theology and the other in psychology. I always planned on being a therapist and that was the plan for when I started grad school. But unfortunately, I became chronically ill and disabled kind of out of nowhere. And so I took a break from grad school, took a break from working, and through having to learn how to navigate the medical field on my own, I have decided that I really wanted to go into patient advocacy, to be able to help patients, to help parents that are in similar situations to what I was in, where they're just thrown into the deep end and help them learn how to advocate for themselves.
Caitlin:
And how many of us may not have had the same experience as you, but know that sensation of feeling like you are thrown in the deep end, and not know what are the medical terms that they're using, what tests should I be having done? What should we do next? How do I know if the care I'm getting is good care or subpar care? And I love that your own life situation has sparked your passion for others as well. I think that's beautiful. Well, we've all had positive and negative experiences with a medical provider. And of course we want to shift that towards having far more positive than negative. And I really think that advocacy can be a major tool in making that happen. So what's your take on what it means to advocate for yourself?
Maci:
So I think that advocating for yourself, it can be as simple as being informed about the conditions that you have, being informed about what the specialty is of the doctor that you're seeing. Even if that's just knowing like, oh, I'm going to go see a rheumatologist. I know that has to do with autoimmune issues. I think that even just that small amount of knowledge is a way that you can go into an appointment prepared. Patient advocacy can also look like having all of your symptoms laid out and organized and severity that can look like having your set three questions and not leaving the appointment until those questions are answered. And it can go all the way to saying, I want this test done, and if you're not going to order this test that my gut is telling me that I need, I would like it you to write it in my notes that you refuse to do this test on me. I think that patient advocacy is knowledge. It is being prepared, and it is asking for what you know in your heart that you need.
Caitlin:
Oh man, I love every single one of those things. And something that I've not thought about before is what you phrased in there of if they're refusing to do something that you think is important, for whatever reason, and like saying to them, okay, I need you to put in your notes that you refuse to do this for me because that does change it a little bit, doesn't it? It does.
Maci:
It does.
Caitlin:
What medical provider wants to say, I ignored the patient's request , especially when it's a very reasonable request. And I see this happen a lot with , for instance, when a woman is newly pregnant and she asks for her progesterone to be tested, and a medical provider, who is obviously not a NaPro technology trained provider, will refuse. And I'm like, how could anyone refuse a simple test like that? So that's a great suggestion for saying, okay, please acknowledge this in my notes that you refuse to do this. So , you were talking about coming in prepared. So in your personal experience or maybe in your training as a patient advocate, what have you found to be the best way to really prepare for those appointments?
Maci:
So I would say that the number one way that I prepare, the advice that I give to my friends and family for appointments to prepare for appointments is to go on to either the Cleveland Clinic website, the Mayo Clinic website, and type in whatever test you're going in for, whatever blood test results, imaging results that you've already had, and learn everything you can about what you've had done so that you're just familiar with the terminology that's going to be used in your appointment. And after that, I would make a list of maybe your top five to 10 symptoms that you're experiencing, how often you're experiencing them. And then I wouldn't go in with more than three preset questions or goals that you have for the appointment. I think that other than that, it can get, doctors like to have a short appointment if they can. And I think that if you go in saying, I have 10 questions, even though I'm sure they are all wonderful and good questions, the doctor's probably going to listen to maybe two of them . So you really want to have everything be succinct for your appointment. And if more things come up, that's fine. But when you're going in and saying, I have 10 goals for this appointment, I, I think that thing , the appointment can get out of hand pretty quickly.
Caitlin:
Hmm . That is such a good point. And we may have 10 questions. But I've also found, and you can tell me if you agree or have found this to be true, that even if you do have 10 questions, maybe five of them will get answered naturally just in the encounter, but there will be some that are still the most priority. And so if somebody does feel like they have 10 questions, sounds like you're saying identify three that you're like, I really want to leave with these three things answered, even if I have to let the other seven go.
Maci:
Yes. Absolutely. Think what information do I need to be able to leave this appointment? And the rest of the questions, like you said, are usually answered naturally. They could also just be a list of follow-up questions that you send over a patient portal later on. And you say, these came to my head later. When you get a chance , could you answer these? And a lot of times it'll just be the doctor's nurse responding, but that is still wonderful information. And sometimes those nurses are a lot more willing to give information about what is going on with your health than a doctor would in the appointment.
Caitlin:
That is a good point. It never hurts to befriend a nurse.
Maci:
Absolutely.
Caitlin:
I'm always telling people, be kind in your appointment. Say thank you. Make friends.
Maci:
Yes.
Caitlin:
Because you are establishing a relationship with these people and you know that this is not just going to be a once a year appointment, you're going to be back. And so I agree with you that keeping up that relationship is a good thing too . So with that in mind, how much of a difference do you think that good patient advocacy can really make? Like what could a Doctor-patient relationship look like?
Maci:
I think that on the best end of the scale, the best that a patient-doctor relationship could look like is one that is collaborative. One where you are both able to give ideas on what you think your care should be, what tests you should get every few months, every year. That relationship can also look like one where the doctor is asking your permission. He or she is asking for consent about what should be done next. And I think that the worst the relationship can look like is you are asking for what you need and the doctor is saying no, and you hear no a few times and then you get a second opinion. And I would say that most doctor relationships fall somewhere in the middle of that. But the more that you advocate and the more that you come in prepared, I find that the more doctors and nurse practitioners and PAs respect you because they can see that you have put a lot of thought into their time. And so they're more respectful of your time and your question.
Caitlin:
That respect is a two-way street.
Maci:
Mm-Hmm.
Caitlin:
So it's a great reminder that by respecting their time and their expertise, they are also more likely to offer you the respect of listening to your questions and pursuing tests or other things that you want done. And that is a great reminder. Of course, we always want those best end of the scale scenarios. But sometimes we're making the most of the middle of the scale.
Maci:
Absolutely.
Caitlin:
We've got a local provider, we've got somebody we've worked with for years, and now we have a new diagnoses or a new scenario, and we're trying to make the best of it. And I think that these suggestions that you've given really apply across the board for any of those situations. But your advice to, if you're not getting the response, the respectful response that you deserve, go ahead and find someone else , get another opinion. I think that's so important and can't be over said because you are worth it. You know, you are worth getting a medical professional who cares.
Maci:
Absolutely. And I know that not everyone is living in an area where there are multiple rheumatologists, multiple oncologists, but absolutely. Looking at throughout your state, a lot of times there are telehealth appointments that are able to happen. You're able to do your lab tests at your local clinic while getting the expertise of your bid state hospital. I see multiple doctors that are in my state and outside of my state, and I think that being able to have so many different opinions has only aided my care instead of making it more confusing.
Caitlin:
Yeah. That's so important. And I'm just thinking about how all of the management skills that you're describing, like how to prepare, how to find resources, how to work with different doctors, how to keep up with your lab results, all of that takes so much physical and mental and emotional energy, which is why I would imagine a lot of patients would may be interested in working with a patient advocate.
Maci:
Yeah. I would say that finding a patient advocate, whether it's through your primary care office, a local hospital, your insurance is an invaluable piece of the puzzle. If just like you would go in for a dentist appointment or go in for your yearly checkup, you should be having regular check-ins with a patient advocate so that you're not drowning in everything medical.
Caitlin:
Yeah. And I didn't even know that those were the ways that you find a patient advocate. So that's very helpful for me. You can call your insurance company and they'll provide you with someone.
Maci:
Absolutely. I have a patient advocate through my insurance that calls me once every six months. She used to call me a lot more frequently, but thankfully through the years I've acquired enough of those skills on my own. And then also just googling patient advocates near me. There are plenty of freelance patient advocates that you can work with most of them across state lines. And I know that's how I plan on working when I'm certified.
Caitlin:
And we will absolutely make sure to get people connected with you when you are, because I know you'll be absolutely fantastic at that. And I'm just sitting here thinking about Creighton, which is the fertility appreciation method that of course we use and we talk about so frequently on Woven Well, and I'm just thinking about how this is a tool that we use specifically to help women who are trying to advocate for themselves with OBGYNs. We need as many tools as we can get, and I'm sure you've experienced this, but in the medical field in general, but especially within women's healthcare. For some reason, I feel like it can be this field of medicine where things get dismissed or overlooked or told that they're in your head. And it's like, no, I have a chart that shows in black and white, you know, or green and white, whatever, you know, red, green and white, that shows very clearly that something is going on, that something's unusual, that this is happening this cycle when I knew something was off versus last cycle when everything looked standard. You really have something that you can bring in and discuss with your doctor, and it can help you to time lab results or lab tests and other things. And even if you're on the end of the scale where you don't necessarily have an OBGYN who is super responsive and willing to do things differently, if you come in with that chart and you come in with that personal knowledge about yourself and you're able to say your tip Maci of Okay, I want you to put in the notes that you were unwilling to do this simple lab test for me. I think that we can really find a point of either improved encounter or, like you were talking about, be able to work with somebody, possibly a NaPro technology trained medical provider who will be able to shift that whole experience for you. So patient advocacy, very important. Maci, thank you so much for being on the show and for sharing your experience, your knowledge, and your passion for this topic. Thank you so much, Caitlin. We are all about advocating for ourselves in the doctor's office at Woven. If you are interested in any of our free resources about advocating for yourself and we have resources on advocating for a pelvic exam or a vaginal ultrasound, or even about how to ask questions of your doctor, make sure to click the link in the show notes to get those from our website. Again, those are free resources. As always, thanks so much for listening as we continue to explore together what it means to be woven well.