Discovering the Truth Throgh Tongue Pain – Margo’s Journey

Jen Hardy [00:00:09]:

Did you know that pain in your tongue can be a sign of a medical problem? No. Neither did my guest Margot. But it turns out that painful tongue led her to realizing a much larger issue. And it’s a good example of how knowing our body and paying attention to what’s happening with our body is very important. Because when you do experience changes, you can go to the doctor and get help. And that’s just what she did. So let’s hear Margot’s pretty incredible medical gaslighting story. Margot, thank you so much for coming on the show today and being willing to share your story. Oh, my gosh, I really appreciate you doing that.

Margo Shoaf [00:00:56]:

Yeah, of course. Thanks for having me on.

Jen Hardy [00:00:58]:

Oh, you’re welcome. You want to start by telling a little bit about you?

Margo Shoaf [00:01:02]:

Sure. So I’m Margot. I am 31 years old. I’m from Kentucky, but I live in Georgia right now. My husband is in the army, so we move around a lot. We have a six year old daughter, and let’s see, in my spare time free time, I’m a stay at home mom, but in my free time, I have a blog called Margot with the Flow, and it is dedicated to my health journey. I say that I’m chronically ill and chronically fabulous, so I like to share. Just I have a lot of rare and chronic medical conditions, and I like to share those things with people on the Internet, and I know a lot of people think that I’m over sharing, but when you have such rare problems, finding someone online who’s going through the same thing as you is so invaluable. And I’ve gotten so much out of connecting with others on social media, so I’m trying to be that for somebody else. I also have a podcast of my own. It’s about military spouses, and it’s called Household Six. And then I do a lot of volunteering and just little stuff like that. But, yeah, that’s pretty much me.

Jen Hardy [00:02:09]:

That’s awesome. We have way more in common than I realized, so my other podcast is fabulous. Over 50. So fabulous. And we’re also a military family, so thank you for your service. My husband’s retired. Retired army.

Margo Shoaf [00:02:24]:

Oh, wow, cool.

Jen Hardy [00:02:25]:

Thank you for that. I’m going to listen to your podcast, and I’ll have links in the show notes for all of your things. So people want to come see you, they can come check it out, and we’ll have that on the website as well, so yeah. That is so cool. All right, so in your fantabulous medical journey, I’m sure that you’ve experienced more than one episode of Medical Glass setting. Unfortunately, yes. But what was the story or stories that you wanted to share?

Margo Shoaf [00:02:55]:

Yeah, I had to make notes because I’ve had such an interesting journey. So I was born with a genetic condition called Beckwith Whedeman Syndrome. I did not find out that I had that until I was 24 years old. So when I was born, one side of my body was larger than the other, and my parents kept taking me to the doctor after doctor, and finally after so many appointments, they found out that I had Hepatoblastoma, which is a form of childhood liver cancer. So I had the right lobe of my liver and the tumor removed, followed by four rounds of chemotherapy. So I was cancer free by the time I was one. However, I had ear tubes too soon after chemotherapy was completed and it melted my right eardrum. So I had my eardrum rebuilt twice in 1997 and 99, and neither of the surgeries worked. So I still have a hole in my eardrum and a conductive hearing loss that requires me to wear hearing aid. Something else that they thought was just a side effect from the cancer is I mentioned one side of my body is larger than the other. That’s called hemi hypertrophy. So when I was twelve, I had surgery to stunt the growth in my long leg so my short leg could continue growing and essentially catch up, making me even. So that pretty much worked. And I’m doing air quotes normal a normal child after the age of about 15. Everything that should have been wrong with me because of all of these complications with surgery and cancer should be in the past. So I should be healthy and moving forward and going into adulthood. And I was for a few years. High school and college were pretty normal for me. I think my parents probably experienced medical gaslighting, but I never did because they were the ones who were doing the emotional labor of me having cancer and the ones having conversations. I was just kind of there. So it was really interesting because people always believed me when I was like, oh, I had cancer and I had all these really rare problems. And then all of a sudden I become an adult, I get married, we move to our first duty station as an army family, and I’m explaining all of this to my new doctor and I’m like, it’s time for my yearly cancer checkup. I need this and this and this. And he did not believe me. He was like, this is unheard of. I can’t believe you would have all of these tests. The cancer was 25 years ago. You do not need continual checkups for that. And it was very startling because I just got married, just kind of like left my family and my mom kind of being the person who talked to the doctor. And then all of a sudden the first conversation I had with the doctor and as an adult, they’re like, yeah, no, you’re lying. And so it was a lot. I left that appointment very discouraged and it was kind of a wake up call of, oh, I’m going to have to spend the rest of my life advocating for myself and fighting for myself. And as you know, as a former military spouse, we move every two to three years. And so you have to have this same experience over and over with every new primary care manager you receive. You have to make sure that they’re understanding all of your conditions and your medications and your history and what tests you need for preventative maintenance. So, yeah, it’s been a lot. And then since then, I know you all are listening and thinking, wow, she has a lot of problems. And I do. But since then, I have been diagnosed with fibromyalgia lichen plantallaris, which is a scarring form of alopecia, and Eagle syndrome, which is where your styloid process bone at the base of your skull starts growing down into your neck. And so fibromyalgia is pretty common, but there’s not a test for it, so it’s very hard to diagnose. And then the other two problems are so rare that it took me about three to four years with both issues to be correctly diagnosed because I was told over and over that’s just your anxiety. You have hopochondria there’s nothing actually wrong.

Jen Hardy [00:07:39]:

With you, which is medical gaslighting at its finest.

Margo Shoaf [00:07:44]:

Exactly, yes.

Jen Hardy [00:07:45]:

That is wild. So from the fact that someone said they didn’t believe you had cancer, I mean, that’s just so mind blowing. But okay, so wait, the Eagle, what is that called? I didn’t okay, so how did you discover that? How did you get them to finally find that?

Margo Shoaf [00:08:00]:

I do want to clarify. The doctor believed that I had cancer, but did not believe that my yearly checkup was necessary.

Jen Hardy [00:08:08]:

Okay. Which, yeah, I’ve never heard either that you don’t need to check.

Margo Shoaf [00:08:12]:

He was just like, it was so long ago. I can’t imagine you would have lasting effects that you didn’t already know about. But again, my thing is I always want to be better safe than sorry. And so what’s another little test going to hurt? But moving on to Eagle syndrome. So I kept having this pain in my tongue, which is a very weird place to have pain. You don’t hear a lot of people complaining that their tongue hurts. And my sister is actually a dentist, and so my first thing was I’m going to call her and I told her, and she was like, that is really bizarre. I have never heard of that. And so I kind of did my own research and googling things like, can you pull your tongue muscle? Is your tongue a muscle? I’m not a doctor, not medical background, so I have no idea. So I can’t really find a lot of things. There was like, burning mouse syndrome and all this stuff, and I was like, that doesn’t quite fit what I’m going through. But it got so bad that I would stand in the shower with the water as scalding hot as I could stand and just collect water in my mouth and let it kind of act as a heating pad under my tongue. So I kept doing that. I would just put bio freeze on my neck. I would take Tylenol, like, literally anything I could do. And finally, about three years later, of the doctor, the dentist, they tested me for lymphoma leukemia, all this stuff. And finally I went to a massage therapist, and I was telling her about my problems, and I was like, My tongue just hurts. And she said, wow, the only thing that I’ve ever heard of someone’s tongue hurting is, I have another client who has something called Eagle Syndrome. So I went home, started googling it, and was like, this fits the bill. This is exactly what I’m feeling. I think this is what it is. And so I told my sister, who, again, is a dentist, and she was like, yeah, I’ve heard of that, but that’s not really something a dentist deals with. It’s more so like a facial doctor, an oral surgeon or something. She was like, Come in, and we’ll do a panoramic X ray to see if maybe your styloid bone is elongated. And indeed it was. And my sister was just flabbergasted because she was like, people having elongated styloid process bones all the time, but until you become symptomatic, you don’t have Eagle syndrome. So she sent me to a specialist down in Jacksonville, and he confirmed and wanted to schedule me for surgery, and I was going to get it removed and fixed. And then last year, with all of the conflict happening in Eastern Europe, my husband was rapidly deployed, so I couldn’t have surgery because I have a six year old who’s autistic, and I didn’t have anyone to help me watch her help me recover. So I’m still kind of in that limbo of and I tell the doctors now, I’ll tell my primary care manager, different people like, oh, I have Eagle Syndrome because I want them to be aware and it to be noted in my chart. And they’re like, I’ve never heard of that. I’m like, yeah, you haven’t heard of most things, probably, that are wrong with me.

Jen Hardy [00:11:43]:

Yeah, I have the same problem. And they’re like, can you spell that? Because I have myoscenia Grabbis people do not know. And if I say I have muscular dystrophy, people always say, oh, you have Ms?

Margo Shoaf [00:11:54]:

Oh, yeah, they’re different.

Jen Hardy [00:12:00]:

Neither one is fun. But, yes, I can relate. So you’ve got a lot going on. So you haven’t had the surgery yet. Are you still in.

Margo Shoaf [00:12:10]:

Ebbs and flows? So I think that as the bone grows down, it can get tangled in nerve endings, in muscles and different things. And so I think when I was experiencing such bad pain that maybe it was touching nerve endings, and so now it’s kind of grown and surpassed those, and that’s just me kind of doing my own research and trying to figure out why pain is so bad some days and not. I am going to try to find a doctor and get a second opinion before I have surgery. I do think I have it, and I’m so thankful to be believed, but that’s another thing with medical gaslighting is I had waited for three years of people telling me, there’s nothing wrong with you. You probably just bit your tongue like crazy explanations. And so when I finally found this doctor who was like, yes, you have Eagle Syndrome, let’s have surgery, a lot of the questions that I asked him that I had found from other people online who had had the surgery, and it was their concerns, their issues. When I presented those questions to the doctor, he kind of blew me off and was like, you don’t need to worry about that. That doesn’t really happen, all these things. And I was just so happy and relieved after three years that somebody believed me and was going to fix my problem, that I didn’t care that they weren’t answering all of my questions. And so then I came home, and after my husband was deployed, I had obviously a lot of months to think about it, and I was like, I really do want to know the answer to those questions, even if they think they might not even pertain to my case or that’s a rare complication. If someone’s going to have a rare complication, it’s probably me. I want to know. So I think you have to be mindful of that. It’s like you finally get answers and validation, but you can’t just take the first yes that comes your way. You have to make sure that they’re well versed and they have a good bedside manner that you that’s probably a privileged thing to say, that not everybody could get a second opinion or find another doctor. And especially if it’s a really rare thing, like, maybe there’s only one doctor who knows about your condition. But for my specific situation, I am going to try to go to another doctor a few hours away and just see what they think and then whichever one I feel best about, proceed.

Jen Hardy [00:14:40]:

I think that’s a really good thing to do, and it’s really good if you’re listening, too. Listen to yourself, listen to your body, right? And if you have questions, it is okay to get your questions answered. I think that’s a big thing. We think, oh, well, they said, I don’t need an answer when you’re in the doctor’s office. I think, like you said, well, I finally had someone affirm it, so that felt good. So it allowed you to look over the other stuff, right. And I think when we’re in the moment, we might be either worried because we’ve had this happen in the past, or we have a lot of emotional things that allow us to just overlook things. And then you get home and you’re.

Margo Shoaf [00:15:19]:

Like, wait a minute, right? And then your family is asking you questions, and what about this and what about that? And you’re like, Well, I forgot to ask that because I was just so excited that I was going to get relief and yeah, you’re not setting yourself up for success when you do that, but it’s very hard not to because, again, it’s such an emotional journey to get to that point.

Jen Hardy [00:15:50]:

Yeah. And I don’t know about you, but sometimes I’m like, am I being a jerk if I’m pushing? And I’m like, you’re talking to me, you’re being good. I don’t want to make you tune out, but it’s a fine line that we walk. So is there any advice that you would give to someone listening as a patient that might help them not have medical gaslighting experiences at least as often that could help out?

Margo Shoaf [00:16:17]:

Yes. So I talk a lot about this on my blog and instagram. So be sure to go and look because I’ve created some resources that you can take with you, kind of like list, I would say think of some of the normal responses that you’ve already received from a doctor and how you could better respond, not in the moment. So I talk especially a lot about this one. When you’re at the doctor and you’re describing all of your problems, especially if you have things like Ms, fibromyalgia, lupus, kind of autoimmune conditions and you’re overweight, the very first thing the doctor is going to say to you is, try losing weight. And I absolutely know that diet and exercise, eating healthy, all of those things are absolutely important and need to be prioritized in life. However, not all bodies are going to be able to lose this weight that the doctor wants you to. Some bodies are just going to be larger. And so I think having well, when the doctor tells you that for the first time, it’s very discouraging. You think, wow, this is my fault. I am exacerbating all of my problems. I need to lose weight. It’s my fault that I’m not healthy. And that’s more than likely not the case. So when you’re removed from the situation and not so emotional, think about what you can say to the doctor to continue the conversation, because the doctor giving you this one action item of losing weight is not the end of the conversation. You can say, I’ve tried losing weight. The reason that I’m here is because of the weight gain from the problem. The problem is causing the weight gain. The weight gain isn’t the problem I’m here for. You can say, I’m recovering from disordered eating. Please do not mention losing weight as part of my care plan. What would you say to someone who lives in a smaller body with the same exact symptoms that I’m already experiencing? If I do lose weight, what are the next steps? Medication, therapy? Can we go ahead and start those now? So I think just knowing that what your doctor says isn’t the end all, be all, you can continue to have that back and forth conversation, which, again, like we just said, it is a fine line that you’re not trying to be a jerk, but you have to find that sweet spot of listening to their advice, but also advocating for yourself.

Jen Hardy [00:18:41]:

I love that. Yeah. And you’re not the first person that I’ve talked to that has said that’s where they go for the first thing, and it can be things that really have nothing to do with weight.

Margo Shoaf [00:18:51]:

Right.

Jen Hardy [00:18:51]:

And so, yes, a BMI of 22 would be fabulous for everybody. But also, yeah, like you said, like medications, and there’s all kinds of things that contribute to that. And I like that you added about having issues, because I suffered with anorexia, and I gained a little bit of weight around the time I turned 50, because I turned 50, and then I went into the doctor, and he’s like, you really need to lose weight. And I thought I just literally was okay. So thank you for sharing that. That’s something to share with the doctors, I think. Yeah. That’s really good advice, all of that. So thank you very much. Yeah, that’s going to be really helpful for people.

Margo Shoaf [00:19:42]:

Oh, good. I also think it’s the same vein of when they say, do yoga, try to stretch, go for a daily walk. And I’m always like, again, with the diet and exercise. I know that. And I’m actually a certified Zumba instructor, and so when I tell them that, they’re like, oh, interesting. I’m like, yeah, but I’m not able to do all of that like I once was because I’m ill, because of the reasons I’m here. So I can’t always do the yoga that you’re asking me to, but I’m in a flare of fibromyalgia and can’t get off the couch. So you can see how that’s not super helpful advice.

Jen Hardy [00:20:30]:

Yeah. Yes, I do know. Well, thank you so much. You are amazing, and I really appreciate you. If you ever want to come back and share more stories oh, for sure. I would love to do that.

Margo Shoaf [00:20:47]:

I have quite a few, so you’ll have to have me.

Jen Hardy [00:20:50]:

Okay. Well, thank you, Margot.

Margo Shoaf [00:20:53]:

Yeah, of course.

Jen Hardy [00:20:54]:

I’m so thankful that Margot was willing to come and share her story. Do you have a story of medical gaslighting? I would love it if you would reach out to me and let me know. You can go to Medicalgaslighting Info, go to the contact page and send me a message, because the more stories we get out, number one, it gives you a voice, because when you have had that happen to you, it can make you feel so vulnerable. But also, we’re educating other patients and letting them know what’s happening and what to watch out for and how we can all be better patients and advocate for ourselves better so we can get the care we need. So, again, Medicalgaslighting Info and I look forward to being able to talk to you next week.