How to Advocate For Yourself in Healthcare Settings

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Welcome back to another episode of the Diabetes Digital Podcast.
Did you know that advocating for yourself in the medical system can lead to better health outcomes?
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In today’s episode of the podcast, we’re sharing practical strategies to help you feel confident and
empowered when navigating healthcare.
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So whether or not you’re managing diabetes, or you are seeking A diagnosis, or you simply want to
ensure that your concerns are heard, this episode is going to offer insights on how you can get the
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care you need.
Yes, And for today’s episode, we’re going to cover how to prepare for medical appointments, the best
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ways to communicate your symptoms, how to ask thoughtful questions that guide your provider in the
right direction.
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You’re also going to learn why keeping a health journal, bringing a support person, following up
through patient portals, all of that can make a really big difference in your healthcare experience.
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And our focus is always building strong collaborative relationships with your healthcare providers
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because that’s going to allow you to advocate for yourself effectively, but also have that support
that you really need to make sure that you have the best health outcomes.
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Welcome to the Diabetes Digital podcast.
I’m Wendy.
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And I’m Jess, and we’re best friends, registered dietitians and diabetes educators.
Through our telehealth platform, Diabetes digital.co, we offer accessible and personalized virtual
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nutrition counseling for people with diabetes and pre diabetes.
Visit diabetesdigital.co.co to book your first appointment.
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We accept insurance and offer affordable self pay options.
Now let’s get into today’s episode.
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Before we get into some of our advice, I just want to start with a personal story.
And I feel like anytime I’m on a podcast these days, I tell this story just to illustrate many
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different things.
But that like sometimes you do have to really advocate for yourself and trust yourself in your own
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lived experience.
So a few years ago, I had been experiencing a mix of symptoms that didn’t really make any sense to
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me.
I had extreme fatigue.
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I felt like no matter how much I slept, I was exhausted.
Also, I didn’t really sleep.
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Even if I slept, I was exhausted, but I didn’t really sleep for like a year.
It was a really challenging time.
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I even got like a sleep expert to kind of help me.
And all the things that she recommended, I tried and nothing worked.
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I was also having very irregular cycles or sometimes no period at all, which was very odd for me
because my cycle had always been really regular.
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I also had some unexplained weight changes even though I was maintaining the same routine.
And I know that we are a weight inclusive podcast.
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And, you know, typically as people get older, they do end up gaining more weight.
However, weight sometimes is an indicator.
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Like if nothing is changing and there’s a significant change in your weight, it might be an
indicator that something is going on.
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Right.
So I, I was like, something just seems a little off.
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Also, I was having a lot of brain fog and just like mood shifts.
I remember being in meetings, I would just like start crying.
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Like I could not control my moods at all.
And I could not get any work done.
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I felt like I just was not myself.
I was also started having these like insane hot flashes and I was just like, what is going on in my
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life?
So I went to 8 doctors, unfortunately, yeah.
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And probably honestly more 8 doctors plus like this sleep specialist, plus I did acupuncture.
I did chiropractic.
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Like, I did so many different things to try to get to whatever was going on.
And I told, you know, all the doctors what I was experiencing, and I felt like there was just
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something off going on.
But their response was usually just like, oh, you’re probably just stressed.
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Like, you know, just exercise more.
Like, get some sleep.
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And I’m like, I’m trying to sleep and like, I literally cannot sleep.
I’m waking up in like, pools of sweat every night.
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Like something is off.
Anyways, after the 8th doctor I finally realized what I had was a condition called primary ovarian
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failure which essentially is early menopause and your body just kind of jump starts you into
menopause because your ovaries are not really functioning anymore.
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It can be caused by so many different things, but I think that because I have like other autoimmune
conditions, I feel like it was a autoimmune type of thing where my body just started attacking my
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ovaries.
But like once I got the treatment that I needed after the advocating for myself, like my life
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improved so, so, so much.
Like all those things I mentioned have gotten a lot better.
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Not that I’m like, you know, where I was before, but I still feel a lot better.
So I’m curious, Wendy, like, have you ever experienced anything similar or like did you have an
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experience where you had to advocate for yourself in the medical system?
Yeah, I remember when you were going through that and I was like, Oh my God.
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It was like we were trying to get to the bottom of what was going on and it just felt like
exhausting with all.
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I mean, I can imagine you going through it just like all the visits that you had to go to.
And I haven’t gone through anything like that myself.
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But I will say, like working in healthcare for all of these years, I’ve seen this happen like so
many times with other people.
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And I feel like it’s affected my approach to like getting preventative care where like I don’t even
have a primary care provider at this point.
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And I have it in a long time.
Like at one point I was just going to urgent care because I was like, just get my labs done.
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And I can interpret them myself because I just didn’t want to have, you know, just that kind of
interaction where I feel rushed or I feel like I’m not being listened to because it’s so common.
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And then I was like, well, I should probably get like a primary doctor And then I don’t know, I, I
would maybe like get one and then I wouldn’t go back.
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And so I have like a very complicated relationship with just like healthcare personally.
And to say I do not, I still don’t have a primary.
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I need to get one, partly because I’ve just been like moving a lot as well.
But it’s also like just my hesitation of like, having to deal with going into the clinic, dealing
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with, you know, staff that might not be very friendly, just like all of those things are like, they
kind of push you away from like, wanting to do these visits, you know?
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For sure.
And I think that there are good doctors out there.
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And I also think when you have a good provider, you have to like affirm them.
That’s like my biggest thing because the Doctor Who finally diagnosed me and helped me and was like,
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this is so obvious what you have.
Her name was also Jessica.
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She worked at Cedars Sinai.
And I was like, oh, my God, you literally like saved my life.
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Like, thank you so much.
I still, I’m like, you changed my life.
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Like, I can’t believe this.
And her for her, it was like so basic.
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She’s a reproductive endocrinologist.
She’s like, why has this taken you so long for them to give you a diagnosis?
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Like this is very obvious.
But yeah, I think once you have those good providers, like, hold on to them.
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And if you have a bad provider, like Wendy said, don’t just settle, like keep trying to find someone
who really like gets it.
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And sometimes, unfortunately, it takes a lot of time.
And that is a privilege too, to be able to find 8 doctors, right?
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Like some people don’t have health insurance or you know, I know even in Sacramento, there’s a lot
of long wait times for finding a provider.
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So that can be really challenging.
But just don’t give up.
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And you know, if you get that same advice that I was getting where they’re just like, oh, it’s
stress or oh, like you just need to focus on diet and lifestyle.
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And I’m like, no, something’s really wrong here.
I always share the story to my endocrinologist.
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He actually fired me as a patient, which is ironic because I don’t know how I didn’t fire him first.
Basically when I was going to him with these concerns, he’s like, well, because I have Hashimoto’s
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and hypothyroid, he’s like, he’s like you’re a dietitian.
Like I don’t understand how you’re gaining so much weight.
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He was like, you should know.
What to do?
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And I was like, OK.
And honestly, I didn’t even take it because I just like these days I’m like, some people are so
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stuck in that mentality that it’s like, whatever.
But if I was, I’d feel more vulnerable.
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Like that could be devastating to hear from somebody.
But he was the only endocrinologist in in that town.
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So it wasn’t until.
Yeah, I got to like LA There was more access to different doctors that I was, yeah, able to find one
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that worked.
Yeah, and these experiences, they are not rare.
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Studies show that women’s pain is taken less seriously than men’s.
Black women in particular are more likely to have their symptoms dismissed or misattributed to
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weight.
Just thinking about like, what happened with Serena Williams.
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And now that I think back, I’m like, wait a minute.
I actually do have an experience that lasted many, many years.
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I’m now just, like, remembering.
But when I was a teenager and into my early 20s, you remember how debilitating my periods used to
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be.
And I would literally, like, pass out.
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I would be like, vomiting for days.
Like, I just couldn’t go into work.
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And it was every single month.
And I went through like, so many different types of birth control.
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And I was like, always being told like, oh, it’s just like, you just have painful periods.
Like, it was kind of normal.
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Like, yeah, it’s just like, you just have a bad period.
And then, you know, like, now looking back into my late 30s, I’m like, just like, I didn’t really
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get a lot of testing done at that time because I was just told like, oh, yeah, just got on birth
control.
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You just had bad periods.
And I’m like, oh, I’m pretty sure I have endometriosis.
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And it takes years for conditions like this to be diagnosed, especially conditions that directly
affect women like PCOS, endometriosis, fibroids, like, And it’s a lot of times because providers
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aren’t listening the first time around.
It’s definitely like a systemic issue.
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Like medical research has historically centered men.
A lot of the normal Rangers for lab work, they don’t account for how women’s bodies function over
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time.
Yes, Oh my gosh, that’s so true.
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I was just watching an Instagram Reel and it was this guy who said that he was having panic attacks
and he ended up like going to the doctor and they like sent him for further testing or whatever.
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They sent him to a specialist who found out that his panic attacks were from a deviated septum
because he wasn’t getting enough oxygen through his nose.
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And then he ended up having surgery and fixing it and all of his anxiety went away.
But I saw all the women in the comments were like, Oh my God, like how amazing to be a man in the
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medical system where you just like, you go to one doctor.
They’re like, let’s see a specialist, you know, Because I think back to even when I had like chronic
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pain and chronic debilitating headaches, this is like the worst medical experience I ever had.
I went to this male doctor and he was like, he’s like, you know what?
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I, I don’t think you have headaches.
I think you’re just looking for attention.
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Oh my girl, I.
Was mortified.
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Where was that in?
California.
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This was a Kaiser.
Yes, a Kaiser in the Bay Area.
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I will never go to Kaiser.
I know I and mind you, like I, it’s just like so disgusting and so that The thing is, I even because
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my boyfriend at the time, I was like, I knew you should have came to this appointment with me.
And that was another thing where I had like, so many doctors, but I was like, I knew you should have
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came to this point with me because I feel like you’re taken more seriously if you’re even with a man
I know.
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And my biggest regret in life is like, because I really was so shocked.
I like, started crying.
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I was like, Oh my God, this is like mortifying horrible.
I really wanted to write like the president of the hospital to tell them.
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And I just like, I don’t know, I was just like kind of felt so belittled that I didn’t even take
action on it.
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But point being is like a man goes in and says he has anxiety and he’s like diagnosed with this
thing immediately.
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And women, it’s every real problem you’re having.
Not saying anxiety is not a real problem, but every like physical, you know, non mental health
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related problem that you’re having is like always just characterized as anxiety.
It’s like, oh, you’re fine.
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You’re just anxious.
It’s stressed and it’s ridiculous because so many things are missed.
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If you’re listening and you’re thinking I’ve been there because I’m sure everyone listening has been
there.
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We just want to talk about some strategies that can help.
So I think #1 is trusting your gut, your gut, nose, and I.
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And again, I do think that, you know, sometimes people are hypochondriacs, right?
And so I think that you have to.
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I have a best friend who’s a hypochondriac.
Is so funny.
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One time it was so funny.
We like we were in the ER because she she felt she was dying.
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She was like my throat is closing in on me and like she had all of us, like all of our closest
friends like go with her to the ER.
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We’re like by the bed with her.
She’s like I’m done like literally telling me like what she wants on her deathbed and all the
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things.
And it turns out she was just dehydrated.
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And we were like, girl, oh, no.
And I, I remember I had a flight to catch and she was like, you have to cancel your flight.
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I was like, oh, girl.
Oh, no, girl, I’m not doing this again.
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Like, yeah, she always thinks she’s dying.
Hi, does her name start with AB and N with an?
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I Sure it does.
Listen, I think still trust your gut right?
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If something feels off, it’s better safe than sorry.
Definitely better safe than sorry.
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However, if you know you have a history of like being a hypochondriac, then you know you might,
that’s a whole other thing.
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But if you, if you’re typically like when you know somethings wrong, somethings wrong, like really
trust that you know your body.
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And that’s the thing that I always will tell patients too.
It’s like you’re the expert in your own body, Like you know what’s going on, you know, when things
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don’t feel right.
The second thing is document everything.
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And this is something that like I’ve tried to get better at because sometimes you go in and they ask
you, you know, a lot of questions and it’s a lot of details.
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And if you’re not prepared, it’s just like they don’t take you seriously.
But I feel like if you have like a log of your symptoms when it started, the dates, the tests you’ve
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done, the test results, the patterns you have noticed, like bring that data to your appointments.
Because so often I didn’t and it was just like, I can be a poor historian is what we would call it,
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where I don’t know, you know, it’s kind of just you’re in a fluster.
Some people like I get nervous sometimes in medical settings and I just need to have everything
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documented, right?
And then also, I think requesting specific tests, you know, when you feel like it’s indicated.
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So I saw a doctor actually on Instagram say this and I, it really resonated with me.
She was like, if they tell you that they don’t want to do this test, then you can ask them, can you
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explain why you don’t think this test is necessary?
And I think that’s like a helpful question because maybe they have a reason, right?
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Like I’m not saying don’t trust doctors.
Like doctors are experts and they do a lot of medical training and maybe they have, you know, a lot
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of training that’s telling them that they don’t need this test.
But maybe, I don’t know, maybe that question will bring something to light.
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Also, can you document in the chart that you declined to run this test too, so that it’s just there?
Yeah.
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So it’s they have to stand by that decision, right?
It’s like you’re saying like you’re having all these issues.
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And for me it was like, you know, please test like my hormones, like what’s going on, you know, and
when they didn’t do it, it’s like, OK, well, you should have because that was the issue.
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But like, can you document it?
I don’t know what you would do with that information, but I think it just makes them, you know, just
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have to feel solid in that.
Yeah, because you could sue.
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I mean, if it’s like a test that was really important and that, you know, could have prevented, I
don’t know, like a very life threatening condition, then that’s a lawsuit.
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And doctors are very hesitant about, you know, getting sued.
So that would probably motivate them to like, you know, do the testing.
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I think also sometimes you might need that second or third or mind case eighth opinion, hopefully
doesn’t have to get to 8.
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But if your provider won’t take you seriously and it’s just dismissing because sometimes 2 providers
just have so many patients.
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And if you’re a little more complex, like it’s hard because they’re like, I don’t know, you know,
it’s fine.
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So sometimes you’re switching doctors and maybe like finding doctors whose appointments are like 30
minutes long or like even an hour because I was working also with Parsley Health and their
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appointments are an hour.
And it’s like they can really get into the nitty gritty of what’s going on in a way that in like a
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10 minute appointment, you can’t.
So thinking about that too.
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Yeah.
Also like just mentioned, like it could be a good idea to bring a support person.
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So if you just don’t have that personality where you’re like outspoken and you don’t feel
comfortable advocating for yourself in that moment, you could bring your friend, you could bring a
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family member, you could bring your partner, like someone who has that more assertive personality
who can back you up.
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Patient portals are also really helpful.
So a lot of these systems, they allow you to log in.
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You can message your doctors directly.
And sometimes you can message them before your visit just so that they can kind of prepare and know
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what to expect with you coming in, especially if like you have more of like a complicated case.
And you can also follow up and, you know, just like put everything in writing.
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Like this is what I would like tested.
You know, like this medication might not be working for me that way.
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It’s all documented as well.
And especially now I think with like telehealth being really popular, a lot of doctors communicate
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like you don’t have to like phone them up.
Like a lot of them communicate through these like Emrs.
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And then I was also going to say consider a specialist.
So like with justice condition, she really needed to see an endocrinologist and a very specific type
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of my. 3rd endocrinologist, by the way, that was the third endocrinologist.
Yeah, But it it helps like when you get someone who has a specialty because they tend to look with a
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closer eye to like, whatever it is that covers their specialty.
And that can make a big difference too.
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But ultimately, like, doctors are trained in medicine.
You live in your body every single day.
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So, you know, it’s like you don’t want someone dismissing your symptoms if you are sure that like
something is not right, something is going on.
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And just remember that your lived experience matters just as much as a lab result.
The goal is to like use everything together, right?
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So like getting your lived experience, getting those lab results, getting a professional
consultation, like kind of merging all those things to make an informed decision about what is best
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for you.
Yeah.
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I also think that providers, we really need to be very collaborative with the patient.
And I feel as dietitians like we’re kind of trained on that collaborative, motivational, any bring
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approach where the patient is the expert in their life.
But I find that sometimes like other types of providers, they’re not necessarily like approaching it
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in that way.
It’s more so like top down and I don’t love that approach because it’s not even considering me in
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the equation at all.
It’s just like you need to do this.
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And there’s so many different like doctors that I’ll go to and they don’t involve me in the decision
making process.
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They don’t.
Maybe there’s many different medications that I could try for this thing, but you only tell me the
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one and it’s like, well, maybe that one, it doesn’t work best for me or maybe it’s really expensive.
Can we explore other options as well?
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And sometimes there are so many different options.
So I think it’s like sometimes, unfortunately, up to us as patients to, to kind of ask like, you
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know, what is the menu of different things that I can try?
And let me weigh the pros and cons of each and consider all those factors like ease of use, cost.
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There’s so many different things.
So, and like I said, if you do have a Doctor Who is doing that, like please tell them or any
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provider, please, you know, thank them because I think that positive reinforcement goes a really
long way and hopefully it’ll rub off on, you know, some other doctors, you know, colleagues, things
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like that.
Absolutely.
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So if you take away one thing from this episode, let it be this.
You deserve to be heard.
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And if a provider dismisses you, you are not overreacting.
Especially if you do not have a history of being a hypochondriac.
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And also if you feel like you need to push harder for answers.
Like it doesn’t make you difficult.
23:47
Because if I would have just stayed and was like, well, I’m fine as they’re saying and they’re not
really looking, I literally would have been like so sick right now because they found I had like
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literally no estrogen.
And at the time I was 38 and at this probably started when I was 36, like 36 year old needs estrogen
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to function like so I was low on estrogen, low on testosterone.
My progesterone was off.
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So that would have drastically had negative impacts on my health.
So keep pushing for what you need.
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Yeah, and before we wrap up, we would love for you to share this episode with someone who needs to
hear it.
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If you’ve had a similar experience, definitely DM us on Instagram.
We would love to hear your story and also leave us a review.
24:35
You can go on iTunes under the Diabetes Digital Podcast and leave us five stars with some words.
We read all of them.
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Thank you in advance and thank you for tuning in to the Diabetes Digital Podcast.
We will see you next time.
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Bye, bye.
Thanks for joining us for today’s episode.
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If you’re interested in nutrition counseling with one of our expert dietitians to help improve your
pre diabetes or diabetes, visit us at diabetesdigital.co.
25:02
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25:22
We’ll catch you later.
Bye.