EPISODE 2: Autoimmune Self-Advocacy - Stacy's Story

STACY: Welcome back to autoimmune adventures. In today's episode, we will be discussing how self-advocacy is key to managing your autoimmune journey.

BECKY: We'll discuss everything from understanding your condition to communicating effectively with healthcare providers. Our goal here is to equip you with the tools and knowledge so that you can become your own best health advocate.

ALYSIA: Right. So let's just make sure that we understand what we're talking about when we say self-advocacy. In essence, self-advocacy is about empowering yourself to make decisions that are going to impact your life.

STACY: To explain this, we are going to break this down into three sections:

1) Knowing yourself

2) Communicating with your doctor

3) How to empower yourself

What we mean by knowing yourself is that you live in your own body, you know yourself better than anyone else. You need to have some body awareness. Trust your gut. You know your body best. And if you're suffering, if you're having problems, you're going to be the one that understands that best because you're the one going through it. If you pay attention to your symptoms and your flares, then you're better going to understand your own needs and your limitations.

BECKY: I think that one of the things That, you know, you need to keep in mind when you're trusting your gut and your body is what feels normal, and normal is going to be different for other people. You, you should know your body enough that if it does not feel normal, it doesn't matter if they say that the tests are coming back negative or whatever, that you, you should look into things further, because you're the one who knows what's normal for you.

ALYSIA: And I think that that can be a little tricky when you're newly diagnosed. If you've been previously healthy your whole life, and then, you know, you start having these issues and you go to the doctor and they say everything's fine. You might be like me, who - I sort of gas list myself into thinking that I was a hypochondriac, for a few years I think I did that really. And I was like, well, everything's fine. My doctor says everything's fine. I just...it's all in my head. I just need to get on with it. Um, don't do that to yourself. That's pretty unkind way to start your journey without immunity.

STACY: One of the ways that you can help yourself is to track your journey by keeping a journal. And there's a lot of things you can do with the journal, but one of the big things you can do is start to identify your triggers and track the effectiveness of your treatments. It helps you to know. And create a list of symptoms, problems, things that you need to keep track of and be aware of, and it allows you to take it into the doctor and talk to them about it.

ALYSIA: It's hard for a doctor to tell you there's nothing wrong when you can show them a very clear pattern of symptoms that you have been having.

STACY: I would agree.

BECKY: Yeah.

STACY: And it's also a great place for when you're having a good day To be able to put down the things that you've learned that make you feel better or things that you're grateful for things that you are excited about those kind of things.

So a journal is good for a lot of reasons and tracking your journey should not just be negative things. It should also be those positive moments and then you need to educate yourself. You need to learn about your autoimmune disease. It's really hard to deal with something if you don't understand what's happening, so go out and educate yourself and find ways that you can better understand, and the treatments that you need.

BECKY: And I will just pop in here and say, sometimes when you're educating yourself, it can actually be a little discouraging. I will admit when I was first diagnosed with lupus the website that my doctor referred me to was very informative, but it also was very hard to see everything that I was going to have to do and not do and ways that it was going to affect my health.

And I ... so take it in pieces if you need to, is what I was going to say here, that if it's overwhelming to go through it all at once, because you're seeing all these things that, "Oh my word, this is going to change my life!" Do it in pieces and that's what I did. I took it, I tried to do it when I had a good day, and I was like, "Okay, I'll read a couple more sections on this and see what I need to do for myself." Don't put it off forever, because you do need to educate yourself, but if you're really having a hard time Do it in pieces.

Our next item is communicating with doctors. It's always good to have a doctor who will help you do some of these things. Like we hope, we obviously want you to be your best advocate, but we're also hoping that you have doctors that are going to be good advocates for you.

So hopefully your doctor will help you educate yourself. There's some other things that we can do to help our doctors when we're communicating with them. And the first one is to be prepared. Come to your appointments with a list of questions or concerns. If you've been keeping a journal of your symptoms, be sure to bring that too.

And unfortunately, it's great when you have good doctors, but sometimes you will have doctors who won't believe you. So if you're going in for the first time and you're trying to find a diagnosis, be prepared that you might get gaslit or ignored. And to recognize when that's happening, so that you can find a doctor who will be helpful to you.

ALYSIA: Unfortunately, that is an extremely common occurrence, um, amongst literally everybody I have talked to that has an autoimmune condition. Um, they have experienced being ignored or gaslit. At least once or twice by a doctor before they found their diagnosis. And sometimes even after they find their diagnosis.

So this is where we would say, don't stick around with a doctor that is not taking you seriously. There are lots of doctors out there. Find another one. And if that one doesn't work, find another one.

BECKY: And there are a lot of good doctors out there. I mean, when in the next episode, we'll actually talk more about that and why the right specialist can be so helpful for you.

BECKY: The, the other thing that you can do, um, is ask some clarifying questions when you're talking to your doctor. You shouldn't hesitate for us to ask for explanations if you don't understand something. Cause some doctors are really good about putting things in layman's terms, but sometimes they might make it a little more challenging to understand.

If you really didn't understand what they said, just ask them to explain it a little easier for you. There's nothing wrong with that. Express your needs to your doctor. Advocate for treatments that fit your lifestyle and goals. One of the things that I've found with my best doctors is that they will usually give me choices.

Very rarely do they say, this is the one treatment for this. They usually say, we can do A, B, or C. And they let me choose what I think is going to be best for me. And if I really don't know what is going to be best for me, and I'm trying to decide and I'm not sure, I will always ask the doctor, if this was you or somebody that you loved, what would you choose? And honestly, when I've done that, every doctor I've asked has been very candid with me and has, and it's been very helpful. So don't be afraid to, to do that.

Find a support system. Consider a doctor who specializes in autoimmune diseases. And it's important to note there isn't necessarily an autoimmune doctor. You're going to have to go to a lot of different specialists, probably depending on what your disease is, but if you're going to like an endocrinologist, Um, look to see if they specialize - if you have diabetes, look to see if they specialize in diabetes; if you have Hashimoto's, look to see if they specialize in Hashimoto's. Not always possible, but it is the better way to go.

STACY: I think this is really important because you need doctors who are going to meet you where you're at and support you where you're at, and some doctors are not willing to do that. And it's okay, if that's the case, to find a different doctor.

ALYSIA: Yeah.

BECKY: Seeking a second opinion, that's totally okay to do. Like, I think sometimes people feel like they've committed themselves to a doctor and they can't go somewhere else. I don't recommend skipping all over the place for doctors. Doctors aren't perfect. They're not gods. They're not going to have an answer for everything, but if you don't have a doctor who is listening to you, actively listening to you and being helpful, if they're gaslighting you or if they're ignoring you, It is totally okay to seek a second opinion, or honestly, even if you're just not sure of a diagnosis or you're not comfortable with something, it's okay to seek a second opinion. There's nothing wrong with that.

ALYSIA: And the final point we're discussing is empowering yourself. We believe that it is so important to empower yourself as you are on your autoimmune journey. And a few of the ways we can do that are by setting boundaries, learning to say no, when your energy is limited.

That's a hard one to do if you are, um, a parent, or if you are in a high demand job ... there's, it's, it's a tricky one, but it is essentially, um, imperative that you learn to say no, when your energy is limited, or you will burn out. It's so important to be patient and kind to yourself, because living with autoimmunity is more of a marathon than a sprint.

I always think about when I am speaking to myself, um, how I would speak to myself as if I were speaking to someone I love dearly, as if I were speaking to my child, or my spouse, or my best friend, somebody that I care about, when you are dealing with these issues, you're going to have a hard time with your body acting in ways you don't want it to act and it can cause some self hatred. It's not healthy.

STACY: I think it's really hard to not have negative self talk. When you're feeling like crap and ironically, that's really when you need to be the most positive with yourself, which is really hard to do. It's probably one of the hardest things that we're ever going to tell you is a good idea to do because when you are in the dumps, the last thing on earth... you want to wallow. You want to wallow, because then you're justified in feeling like crap, but the truth of the matter is with autoimmunity, sometimes you are just going to feel like crap, and that doesn't mean you need to act like that. You need to instead embrace that idea of I can be kind to myself. I may not be doing well physically, but that doesn't mean I'm a bad person. It just means I'm sick, and it's not anything to be ashamed of.

ALYSIA: Right. And I think, as I have said before, you're, when you're suffering physically and you choose to speak unkindly to yourself or complain all the time, that is a choice you are making to also suffer psychologically. There's a difference. There's a difference and we can choose that.

Um, prioritizing your self care is huge. It is also another tricky one because. I think women especially think self care is something more like maybe a massage or a pedicure. And you know what a massage can be great for, for your health actually, but I'm talking about time, making time for activities that are going to nourish your mind and your body and your soul, and sometimes those activities are not the most fun to do. Sometimes those activities are exercising. Sometimes those activities are menu planning, making sure you have healthy meals on the docket, uh, meal prepping, things that. I personally don't enjoy doing those things, but that is important to take care of my body.

BECKY: I was just going to say one of the other things when we're talking about there's taking care of your body, but also your mind, if you're having a hard day and you're not feeling good. If you like to read, if you have some kind of guilty pleasure TV show you like to watch or whatever, if you have to lay in bed because you're not able to do things, do something you enjoy.

ALYSIA: Call a friend.

BECKY: Yeah.

ALYSIA: Maybe, maybe call a friend or a, or a family member that you haven't talked to, or consider reaching out to a support system online, or, I mean, there's a million things you can do to try to take care of your mind and your body - meditation - I mean, the list goes on and on. Speaking of reaching out to people, find your people, find them, find your tribe, connect with people who are understanding what you're going through.

ALYSIA: I have been extremely blessed because my sisters are here with me and through everything thick and thin, these ladies have been by my side. Not, not so much physically because we live far apart, but they've been there and they have been instrumental in helping me navigate my journey, helping me gain my diagnosis, helping me educate myself and really just supporting me, just supporting me. And sometimes on those days when you just feel like garbage, it's really validating to have somebody be like, you know what? I am so sorry. I love you. I'm here for you. And then maybe distract you with something fun.

BECKY: And whether it's us or some other group, um, because like we've said before, you might not have sisters or family or friends that, that understand what you're going through, but there are a lot of great online support groups. If you get involved with those, you know, find somebody to talk to, because I think one of the mistakes that we fall into when we're looking for our tribe -we expect everyone to understand us and we get, sometimes even people get upset and angry if somebody doesn't understand us. People live through their filter, their life filter, and their life experience, and it's not worth your energy to get angry at people that don't understand, honestly. Just find the people that do understand, so you have some support, and let the other stuff roll off your back, and sometimes that's a real challenge, but it will keep you healthier and happier.

ALYSIA: Yeah. I think a lot of people are, they just, to be honest, they just don't care. They don't care because it's not something they're experiencing. It's not something they're going through and nobody they know is going through it. And when, when you aren't feeling those things that, you know, it just isn't as important to you.

And last but not least, when empowering yourself, celebrate your victories, big ones and small ones, it is important to acknowledge your progress. It's important to acknowledge your resilience and be your, it's kind of being your own cheerleader. You know, and I think that that is another thing that is great to celebrate with your support group, but you have to be able to do that for yourself.

And I think when it comes to empowering yourself, you've really got to be aware of your mental health. Um, it keeps coming to mind as we're discussing this, that being kind to yourself, prioritizing your self care, celebrating your victories, those could all be potentially extremely difficult for somebody who is struggling with depression and, or anxiety, those are things that, um, are not going to come naturally to you if you're struggling with mental illness, so, I would plug in there that, um, find yourself a good therapist, uh, that can help you, so if you don't talk kindly to yourself, and if you don't take care of yourself, maybe they can help you get to the root of that and work on it a little bit.

STACY: We talked about vulnerability a little bit in episode one, and so I am choosing to be vulnerable and share part of my autoimmune story with you today. I just need everyone out there to be aware that this story is going to include mentions of miscarriage and infertility problems. As I share my story, I hope that it will even in some small way help anyone else who may have suffered similar problems.

So my journey with autoimmunity began at an early age of seven when I had a rare form of pneumonia. It put me in the [hospital], it collapsed my lung, and I nearly died. Prior to my pneumonia, I had had a pretty healthy life. I hadn't had a lot of problems until I got sick. Some of the things that showed up in my life [after] is that I would get more fatigued than my fellow friends; I started to notice that I had this sensitivity to wheat. My body didn't like it very much. I didn't think much of it because I was a kid, why would I? But, I began to learn not as a child, but now as an adult, looking back, I can see that my family had a history of autoimmune problems.

My father was a type one diabetic. He had heart disease, and he also was diagnosed with celiac disease, which nearly killed him before they figured out what it was. My mom had Hashimoto's. She had fibromyalgia. And we suspect she probably had lupus too, but with all the other things that were going on before she passed away, they didn't get around to figuring out if that was something that was real.

So we came from two wonderful, amazing human beings who were plagued with autoimmunity. And as I being the oldest, I got to help my mom as she would have each of the kids that came after, and I didn't realize that it wasn't normal to be completely incapacitated after having a baby. Um, my mom's fibromyalgia would flare really bad right after having a baby, and so I spent a lot of time helping my mom.

ALYSIA: I think that, uh, I got to chime in here because I got my fibromyalgia diagnosis after I had had all of my children and I am so grateful for that. But as a mom of five myself, um, so many times I have found myself reflecting on what my mom was dealing with. I didn't know what my mom was dealing with unless her flair was so bad that I could see it with my own eyes.

She didn't talk about it really. She didn't complain. She just got on and did what she had to do for the most part. And there, these days when I am feeling like absolute garbage, and I think about her and I think about, you know what? I am not going to be as close-lipped about this as she was, because I think it's important for my kids to know what I'm experiencing to a degree. I don't want to have it resting on their shoulders, so to speak, but I think they need to know, because they have my blood running through their veins. They might be having fibromyalgia down the road. It's important for them to know what's going on, but yeah, I think you're right. I think that we didn't really, I mean, you probably saw much more than I did as the youngest in things that our parents were dealing with, with their auto immunity, but they did a good job of making it seem very normal.

BECKY: Yeah, like a normal upbringing.

STACY: And I think, you know, they loved each other really deeply. And we were, we were lucky. We came from a family of two people who loved each other and were completely devoted to each other until the day that my father died. I, you know, looking back, I can see it was rough on my parents, but they, they did an amazing job.

In my early twenties, I moved to Northern California and while I was there, I got really sick. I had a fever of 104. I ended up in the hospital for three days, packed in ice. And we never really did really figure out what was wrong. We just knew something had happened, and that was kind of the first big trail marker in my journey.

Now, as I mentioned in the last episode, I married an amazing guy. I'd spent my young adulthood traveling all over the world and I got a master's degree, came home from my master's degree. And sadly, not too long after that, we lost our father. And in the midst of all that, I decided that, uh, my dad had encouraged me to write a book.

So I wrote a book and I got published and then I met my husband. So I had a really good year. And felt better than I had physically in a long time because I was doing everything that I was supposed to care for myself. And then I married my husband and it was wonderful, and we were in our early thirties and decided to have a family.

I had a miscarriage and after that miscarriage, I had another miscarriage and we had three miscarriages in a row. I had after the first one, just written it off to, you know, maybe it's just that first pregnancy kind of thing, but it was followed by another and then another, and after miscarriage number three, I thought there has to be something wrong.

I'd had three OBs look at me. All of them told me that everything was as it should be, and for some reason, it just wasn't happening. So, we realized it wasn't a matter of me being fertile; it was a matter of me not being able to carry a child. And I remembered my mom saying something about her thyroid being problematic during her pregnancies.

And so I went into my doctor and asked to be tested. And this was my first real chance to advocate for myself because when I went in, they tested my TSH, which is what every doctor tests for thyroid, and it was fine. And I told them, I said, "Please test for antibodies," and the doctor argued with me, but you know what, they agreed to do it, and they tested for antibodies, and they came back, and I was a mess.

And so, even though my tests were saying I didn't need thyroid medication, I actually did. And what had been happening was that when I would get pregnant, my thyroid would drop into the gutter, and then my body wouldn't be able to carry the child. So we thought, okay, if we get me on thyroid medication, this will solve the problem.

Thought that was going to fix everything, but it didn't. At this point in time, I sunk into a horrible depression. Now I've already mentioned how wonderful my husband is, but one of the biggest things that I think makes him amazing is that he never once blamed me. He never once did anything other than love me.

And I know he was experiencing grief as deeply as I was. So, after getting the Hashimoto's diagnosis and starting on my Levothyroxine to solve the problem (at least in theory), the doctors and all my, and my OB said, "Go for it. Try again. I think this is what was wrong." So that was my plan, and I successfully got pregnant.

And I remember being so excited because we got to week 12 and I thought, Okay. We are good. My HCG levels are where they're supposed to be; everything is how it's supposed to be.

About this point in time, my sister had come back to live with Doug and I, because she had been diagnosed with breast cancer. And while she was living with us, I have my fourth miscarriage.

BECKY: And that was really obviously most emotional for Stacey and Doug, but it was also emotional for me for a lot of reasons, um, because this pregnancy had gone further than the others. One of the things that Stacey and I did to kind of cheer me up in the midst of cancer treatments was we went baby shopping together, cause I was so excited to be an aunt, and she was so excited to be a mama and we went and got some really cute baby clothes.

And, um, I was actually with her at the. appointment when the doctor told her that the pregnancy was no longer viable, and we had a lot of crying together and I, uh, I was glad that I was there with her even though I worried that I was extra stress, because she was helping take care of me as I was recovering from my mastectomy and starting chemotherapy. But, um, it was, it was an emotional thing, and it put her back where she was wondering what is going on and what was still missing here.

STACY: At this point I was done trying. Um, my husband and I decided that we were going to go a different route. If the thyroid medication wasn't going to solve the problem, I couldn't handle the heartbreak anymore.

So, we decided to do foster-to-adopt, and we got a beautiful 10-year old girl placed with us, and we were working toward adoption, and we were right on the verge of adoption...um, when the state decided that she needed full time therapy, and it was no reflection on Doug and I, it was just that the state determined that she needed to be removed from our home.

And this really messed me up, not just mentally, but physically, we were heartbroken that she was gone. We had had a plan to adopt her and then move to Texas. I already had a job. We already had the move booked, and then she was removed from our home and it was a disaster for us and we knew we had to continue the move to Texas, but I was a physical wreck and I didn't know it at the time, but it was because I was pregnant.

When we got done with our move to Texas, I did a pregnancy test three or four days after we got to Texas and discovered I was pregnant, and we were living with a friend at the time, and within a few days of us being there, I had another miscarriage. And this one, I wrote off to just doing too much and already being fragile, but it was still a shock.

And the hormone backlash on this one was worse than ever before. I was a disaster. And at that point, that was miscarriage number six. Um, and I had two more miscarriages after that. I, between seven and eight, I started having heart palpitations. I went into the doctor and he told me, oh, you've got, you don't have heart problems. Your heart is great. It looks fantastic. I went to a rheumatologist to have my joints tested. I went to a gastroenterologist to have my intestines checked, and a neurologist to have my brain checked. I went to every ologist there was. And no one could give me answers.

But as I was talking to Becky one night, she was mentioning something about celiac disease, and I thought, you know, I bet that's what I have. So I told her some of the stuff that was going on with me. And she said, yeah, you should probably go get checked. So I went in and got checked for celiac, and my gastro doctor did not want to, he said, "No, no, that's not, you're, you're not fitting what we expect to see from someone with celiac,"

And I told him, "Look, it's a simple blood test. My father had it. My sister has it. Can you please just test me?" And I had to really advocate for myself and put my foot down. Sure enough, when the numbers came back, they were the highest he'd ever seen. So then, I had another possible reason why I was miscarrying.

Years, three years of working really hard, to get myself exactly where I needed to be to be able to be pregnant. And we tried one last time, and it ended in failure. Now, I know that my story is really sad, but I want you guys to all know this. I learned from my experience to never give up, to never allow my body's limitations to get in the way of me being able to do what I truly wanted to do with my life. And so. Doug and I are planning to do a foster-to-adopt placement in the next year, where we will have children placed in our home and we will adopt a large group of kids, all in one go. Not eight. I think that's probably a bit much, but we are excited that we're going to do that. I discovered after miscarriage number eight, that there were a lot of things that needed to be addressed, and one of them was that I needed to trust my body and listen to it, and I needed to go to doctors until someone heard me.

When I went to my current primary care physician, they told me that advocating for myself was the thing that was most important for me to do, and that by doing that I was going to get answers. And then she listened to my history, and literally just looked at me and said, "You have lupus." She did a blood test found out I have lupus, and that answered everything I'd wondered for years.

ALYSIA: There are good doctors out there. I know we've talked about being gaslit, and being ignored, and seeking second opinions. There are good doctors out there. Find them.

STACY: So, you know, after miscarriage number 8, I, I had given up, we were done trying to have babies and I was old enough that I didn't think it was a good idea to continue to try, but after that, I had a sudden job loss, and the foster care placement we had wanted to have, didn't happen, and I went into a downward spiral, and I got violently ill, and I don't want to get into it too much. But the, the gist of it is that I was in pain constantly. My whole body was in excruciating pain, and over the course of four months, I lost 70 pounds the wrong way. I was violently ill and I was living on nothing except bone broth and unflavored grass fed whey protein shakes because I couldn't even have vanilla protein powder. I was so, so violently ill.

ALYSIA: It was a terrifying time.

BECKY: It was. Living in Texas with Stacy, where I was seeing her regularly, it was genuinely scary as her sister to see that the doctors didn't understand why she couldn't eat anything, couldn't keep anything down. We were very grateful when she finally found a doctor that figured out what was going on.

STACY: But even in this experience, the thing that saved me and helped me get my lupus diagnosis was that I got so violently ill. And I bring this up because sometimes our body has a way of letting us know that something is wrong.

I had no reason to think I had lupus. I thought I'd figured out everything that was wrong with me. And it was just a matter of taking care of myself. I needed to know I had lupus so that I could live my best life. And I know that sounds a little crazy because how can you live your best life with lupus? But here's why. By knowing I had lupus, I knew I had heat intolerance, and that allowed me to avoid the sun and keep myself out of it. I had always assumed it was just genetics and it wasn't, I, it was not just genetics. I had a disease that was making me allergic to the sun. I also needed to know I had lupus to allow myself to let go of teaching in the classroom, and find something that would work better for me at home.

And now I own my own business and is so much fulfillment and joy in my life. And I never would have even looked for that had I not been put into a Position with my disease that forced me to say, Hey, I can't handle the stress of the classroom. I need to find something that works better for me. We would not have come to this podcast were it not for the diagnoses is that we have received.

We would have had no reason to be here, and despite the fact that I do not enjoy having lupus, or Celiac disease, or Hashimoto's. I would not give those diseases up because they have made me a stronger, more self-advocating individual. I don't just advocate for myself because of my disease. I advocate for myself in all aspects of my life, and it has made me a strong and resilient person, but I could never have done it by myself.

I needed help and I got that help from really good teachers, from my sisters, from my tribe out there in the autoimmune community, and I have had so many amazing trail guides. I have had so much joy in this journey. And I'm going to quote Brene Brown again, because I love, I just love...

BECKY: We love Brene Brown.

ALYSIA: She's the best!

STACY: But this really fits. I know that where I've taken you today is dark and sad, but I hope you can hear in my voice right now. How much joy I have in my life. So as Brene Brown says, "Only when we are brave enough to explore the darkness, will we discover the infinite power of our light." I believe that in this world, the darkness is what makes the light all the more precious for us., and I hope that my story today has helped you to know you are not alone. That your sorrow is not unseen, and that there is joy that can be found even in the dark days and the hard journeys that we are sometimes called to experience.

ALYSIA: Thank you so much for sharing, Stace. I, I know that's an emotional thing to share, but I know that somebody is going to hear this and need to hear this. They're going to recognize their own experiences in what you've shared.

So, join us next week as Becky shares a more in-depth look at her journey. And we're going to be discussing the importance of, finding really good doctors, like we've talked about a little bit today. If you have questions or topics that you'd like us to discuss in the future, please comment below. We would love to hear from you, and don't forget to like, and subscribe or visit us at autoimmuneadventures. com.