Finding My Voice

Not everyone is wired to be outgoing and assertive. For them, finding their voice to advocate for themself may well be easy. But for others, finding their voice and confidence to communicate with their healthcare team may be extremely challenging. In this episode I’ll speak with Liz who will share her journey to find her voice, and how that has transformed her relationship with her medical team. For an overview of amyloidosis, please see episode 2 (for clinicians) or episode 3 (for patients).

Transcript

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SPEAKER_00 0:00

Hi everyone. Welcome to the All Things Amyloid Podcast, where we feature patients, caregivers, and clinicians who discuss amyloidosis, a rare and incurable disease. Amyloidosis occurs when the body builds up abnormal amounts of misfolded amyloid protein, which can lead to serious and life-threatening outcomes. I'm your host, McKenzie. An amyloidosis patient and founder of Mackenzie's Mission. Our goal for this podcast is to raise awareness and share firsthand what it's like to live with this disease, to care for those affected by it, and to treat it. We hope this leads to earlier diagnosis and start of treatment, which will improve patient lives. Not everyone is wired to be outgoing and assertive. For them, finding their voice to advocate for themselves may be easy. But for others, finding their voice and confidence to communicate with their healthcare team may be extremely challenging. In this episode, I'll speak with Liz, who will share her journey for finding her voice and how that has transformed her relationship with her medical team. Welcome, Liz. It's so great to have you on the podcast today. Thanks for having me. Of course. It's so great to have you. And again, thank you. And you know, in thinking about today's topic, I imagine our listeners have a wide range of self-advocacy comfort levels. Those that are wired to have a strong voice, spanning to those who are just beginning to find their voice. So before your journey began, where do you think you fell on the spectrum?

SPEAKER_01 1:43

Well, I think for most of my life, I hadn't really thought about needing a voice in terms of my health care. I was pretty probably very passive, honestly, with my doctors. Um I was pretty healthy most of the time before my diagnosis. So I kind of went in and just um did what they told me to do. I didn't ask a lot of questions. Um, and I was mostly agreeable, I would say.

SPEAKER_00 2:06

And then your symptoms began. And at what point did you realize that having a passive voice wasn't necessarily enough?

SPEAKER_01 2:16

Um, it was probably still before I was diagnosed, but as the symptoms were um piling on and being coming more and more of a concern to me, um, I think my frustration started to grow and I wasn't getting the answers that I needed from the doctors. I was kind of being passed from one doctor to another, which was um frustrating and left me a little bit angry, honestly. So um I knew that it was important to change my strategy, and I think that encouraged me to sort of find my voice and I had to do a better job for myself.

SPEAKER_00 2:48

Absolutely. Absolutely. And just the just not having an answer in and of itself is extremely frustrating. So I I certainly sympathize with you there. And when you started to realize that you're not happy with what's going on in terms of your medical care, what did you what did you do?

SPEAKER_01 3:10

Well, I kept uh going from doctor to doctor and trying to seek um people that were more in the know or would be able to answer my questions. So I was trying to be more proactive with that. Um, I think as my frustration continued to build, it sort of fueled my motivation to keep searching and continue on um trying to find the doctors that could um give me the answers that I needed. I also learned quickly that I had to be better prepared when I went to the next appointment because um, like I said, I kind of felt like I was being passed from doctor to doctor. So when I would go, um, and I'm sure you know this, doctors have only a limited time to meet with you, and they don't have time always to go carefully through your charts, certainly if if they've like I had been to several specialists prior. So I would knew that I had to go in with more information for them. Um, and by the time I was at about the fourth specialist, I knew to go in with my full history and in order of um what the symptoms were and what I had gone through up to that point. And I knew that I had to sort of tell them kind of what the doctors prior had done, what tests they had done, and what conclusions they had come to, um, and why I was still in the need for more answers.

SPEAKER_00 4:22

So you say you started realizing that you need to be more prepared. And I think this is a really interesting idea. I don't know if that's necessarily the right word, but a concept, so to speak. So I'd love for you to talk a little bit more about what that meant for you.

SPEAKER_01 4:39

Sure. Um I think, you know, as patients, it's easy to just put everything in the hands of the doctors, but um certainly I learned quickly that um, especially getting the difficult diagnosis that I received, um, if I was going to have the energy and and fight this sort of battle, that I needed to show strength in that and I needed to find a louder voice or a stronger voice in my health care. So I started to just learn to become more assertive with my doctors, and um, it meant that I had to educate myself more. I think I had to educate myself more in terms of the disease process. Um, I had to inform myself as much as possible about like the medical vocabulary, even that they were using, so that I was able to ask more intelligent questions at my appointments. And I was I needed to be able to read and understand my chart, which was getting pretty complicated pretty quickly with all these doctors. So I had to spend some time just educating myself and understanding things clearly so that when I went into these appointments, that I was well informed and I could have more intelligent, open conversations with the doctors. Um, and I thought that that would help me um better understand too the process that they were going through in my health care and what they were saying. So overall, it was a good decision on my part to speak up for myself because I think they appreciated it more in the end. They knew that um I was more wanted to be more involved and they were more prepared, I think, when they knew I was going to ask a lot of questions about tests, about results of the tests and um decisions along the way that the doc doctors were proposing. So I was um definitely asking a lot more questions, which I think was very important in my overall health care.

SPEAKER_00 6:23

Yeah, I think you bring up an excellent point about by being prepared, you can ask kind of more relevant questions to your care. But I thought it was really interesting when you said that you felt like the doctors were more prepared for you, right? That they knew that you were going to come in and you were gonna ask the tough questions that you wanted answers, you wanted to know. And it almost forced their hand into being better for you. So I think that is a I'm really glad you shared that story because I think it's incredibly powerful. But I'd love if you could also share a few more examples of other ways that helped you find your voice.

SPEAKER_01 7:01

Um, just uh thinking of just some specific examples. And I know again, this is out of the comfort zone for a lot of patients, but um one example that comes to mind is that when I was um going through all this, I had to have a lot of infusions and um my veins were getting pretty um torn up, and um it became very more difficult for the nurses to get my IV in. And this is just one example of speaking up for myself as my own advocate as a patient and kind of finding my voice in in my health journey. But um I finally realized there was only one nurse that really knew me well and knew how to do it right. And so I even at the risk of maybe offending some, and I I don't even think they really took it that way, and that was another learning curve for me was that um, you know, they were more than happy to be accommodating. It was just a matter of me speaking up and saying, you know, this person really seemed to understand where to locate Bain and how to do this better. And so each time then they would just bring her in, and I requested that. So that was that was just one example of kind of going out of my comfort zone to be my own advocate. And then um I would think another good example is that um I I had so many different specialists. I think I probably had nine different specialists because it was I was multi-organ involved disease. Um, and they were all coming at me in different directions with um different, you know, protocols and different medicines that they wanted me to take. And so I got pretty good at asking um if the medications that they were proposing was just for symptom management or if it was necessary for my recovery. Um, because I it was becoming difficult to turn to distinguish between side effects of the different medicines versus the progression of the disease itself. So I thought it was very important that we just um take the medicines that were vitally necessary. And I think um it caught some doctors off guard when I was um questioning, even taking the things they wanted to prescribe for me. So um that took a little bit of assertiveness and um again out of my comfort zone. But I think in the end it really did um help my overall um health care. Um and uh I'm trying to think of another example. Like um I had asked if I could switch the data so that I received my chemo because I realized that my when I would get chemo, I always seemed to end up in the ICU following it. And there was not a lot of staff, and my doctor was not there on the weekends. So I I asked them to like change my chemo day so that I would be able to get to the ICU in the middle of the week in case that were to come to happen. So um they were they were very accommodating. Like I say, I think it was just more me speaking up, and overall it ended up being a good, a good um, good thing for my overall health care.

SPEAKER_00 9:48

So of course, and you know it's interesting. I feel like a common theme of all those stories was one, it was difficult, uncomfortable to ask for as a patient. But another thing is it ended up being well received. And like you said, you as a patient, you don't want to offend anyone or feel like you're being a burden to them. And I think that holds us back from asking those kind of questions that you asked. But you're right, at the end of the day, a lot of people are are happy to accommodate your requests, and it ends up being kind of not as big of a deal as you thought it might be. And so, kind of the moral of the story is ask those questions. I know they're uncomfortable, they may be difficult, but a lot of the times they're not as big a deal as you think they are, and it's worth a shot. Worst they can say is no, and you kind of just keep doing what you're doing. So kind of to wrap up our conversation, just thinking about describing how your confidence in using your voice has changed from where you started in your journey to where you are today.

SPEAKER_01 11:12

Oh, I definitely feel a lot more confident going into um seeing my doctors. And um, I think a lot of that came from just educating myself and also realizing the importance of speaking up and being part of the team managing my health. Um, I think the doctors, like you said mentioned before, it was interesting to find that now they're more prepared for me coming into the appointment. So um they kind of predict the questions I'm gonna ask and they have the information ready at hand.

SPEAKER_00 11:42

So um, so I feel a lot more active in the decision-making process, and um it's very empowering too to feel that of course, especially when a disease like this you feel like takes so much from you, particularly in terms of your control. So having something that you know you can control and you know, having that empowered feeling is it can't be undervalued.

SPEAKER_01 12:11

Absolutely.

SPEAKER_00 12:12

So, Liz, I want to thank you so much for joining us today and sharing your your thoughts and your experiences in terms of finding your voice. Um in closing, I want to leave you with the opportunity to offer any nuggets of advice for our listeners, or particularly maybe those patients who are just diagnosed or are struggling with their confidence in working with their care team.

SPEAKER_01 12:41

Sure. Um I would say one just suggestion is to look at your patient-doctor relationship as more of an employee-employer relationship. And oftentimes we forget that they're doing a job for us and they're working to get me healthy. And so um it's it's great that to be respectful and friendly, of course, to our doctors and caregivers. But um, I think it's it's important that we're not really looking to befriend them necessarily, that the the job is to get healthy. And especially when you're dealing with a serious and and very um rare disease, it can be frightening. So you want to be sure that you are treating them as somebody who's doing that job for you. So um uh, and I think it's important too to be very actively involved in the healthcare process and um your own healing, and that it shouldn't be viewed as a passive relationship, but um to be able to ask questions and um to not be afraid, I think, to speak up when you feel you don't understand something or you want clarification about things that are going on within your healthcare plan.

SPEAKER_00 13:49

So yeah, um I think you've left us with a lot of really interesting things to think about in in terms of finding our voice and how how we can go about doing that. So for our audience, particularly those who are looking to find strength in their voice, I hope you found today's episode and and Liz's experiences helpful. And but also those who may be medical providers. I hope that today's episode reminds you that patients don't all have the same level of confidence and their ability to be fully engaged and advocates in their care can vary widely. So I ask that you are patient and encourage them to ask questions, to help them find their voice, and the care journey and everyone that's involved with that will be better off. Thank you for listening to the All Things Amyloid Podcast. If you find our podcast informative, please follow and share it with others. If you want to learn more about the work we're doing at Mackenzie's Mission, please visit mm713.org. We'd also like to thank AstraZeneca Pharmaceuticals, Alexion Pharmaceuticals, Al Nylum Pharmaceuticals, and Bridge Biopharma for their sponsorship to help raise awareness about amyloidosis. We hope you stay tuned for future episode drops. Thanks for listening.