Taught: The Podcast
Taught is a podcast where educators and others discuss how they really feel about education, burnout, and strategies to make the world and education burnout-free.
Taught: The Podcast
Sunflower Syndrome Update: The Chronic Illness Burnout Connection
After grappling with years of uncertainty and misdiagnosis, Tristan finally received clarity when she was diagnosed with sunflower syndrome at 34. Her story is a testament to the resilience required when navigating life with a rare neurological condition. In this episode, we explore how such chronic health conditions extend beyond physical symptoms, intertwining with emotional exhaustion and burnout. Tristan shares her journey of advocating for herself in the healthcare system, the relief of finally understanding her condition, and the ongoing challenges she faces.
Our conversation delves into the intricacies of living with sunflower syndrome, including the unique seizure activity triggered by sunlight. We discuss the hurdles Tristan encountered in securing the right diagnosis and treatment, and the complexities of managing an invisible disability in the workplace. From obtaining necessary accommodations to addressing the stigma associated with chronic illness, this episode underscores the significant emotional and financial toll these challenges impose on individuals like Tristan.
We also highlight the broader implications of chronic illness, emphasizing the cycle of stress and exhaustion that often accompanies long-term conditions. Tristan candidly discusses the financial burdens of managing her health, the impact on employment and daily life, and the critical importance of community support. This episode serves as a call for greater empathy and understanding in both healthcare and professional settings, offering insights and advice to those navigating similar struggles. Join us for an enlightening discussion that seeks to foster support and awareness for individuals facing the dual challenges of chronic illness and burnout.
Season 1 :
Join the Conversation: https://taughtbymelef.blogspot.com/
Interested in being a guest on the podcast? Email promelef@gmail.com. Include your name, role in education, and a summary of your story.
Here's the book that started it all:
Taught: The Very Private Journal of One Bad Teacher
Available @ Amazon in ebook or audio:
https://a.co/d/1rNZ84h
For immediate help use link for resources:
https://www.healthcentral.com/mental-health/get-help-mental-health
Other resources:
Amy Schamberg Wellness: https://www.amyschamberg.com/about
NHS - Resources for Grief and Burnout
https://www.nhs.uk/mental-health/feelings-symptoms-behaviours/feelings-and-symptoms/grief-bereavement-loss/
Melissa Anthony MA, LPC Trauma & Grief Counselor
https://www.psychologytoday.com/us/therapists/melissa-j-anthony-grand-rapids-mi/944381
So I had a 72 hour EEG done and I wanted to see what I wanted. Well, my goal was to see if we could catch the sunflower syndrome on. You know the EEG activity, and I thought that I was just having these seizures in the sunlight or around a bright light. But it turns out that I found out that I'm having multiple seizures a day and I didn't even know about it. And then I also have seizure activity when I'm falling asleep. As I'm falling asleep and then also as I'm waking up, how much I miss not knowing that we're all screwed.
Speaker 2:A few years ago, I started writing a fictitious story based on my time as an educator. It is called Taught, and the story was partially inspired out of anger and frustration fueled by burnout. Okay, actually, it was more than partially inspired by anger and frustration fueled by burnout. Okay, actually, it was more than partially inspired by anger and frustration. But taught has also become a vehicle for me to tell what I thought at the time and in some ways continue to think was and is the real story of teaching. I now realize that my perspective is not everyone's perspective, but there are some pieces of taught that resonated with many educators perspective, but there are some pieces of taught that resonated with many educators. This podcast is an extension of that story and I, a former teacher, will interview other educators, asking them to share how they really feel about the current state of education. Why are so many teachers burnout? Why are so many like me leaving the field? We likely won't solve any problems or come up with any solutions, but we can create a community of voices that maybe begin the conversation around how educators can take back teaching. I'm Melissa LaFleur. Welcome to Taught the podcast.
Speaker 2:Hey, everybody, this week's episode is an update. It's actually an update and it is an episode that's going in a direction that we've been talking about for a while, which is burnout outside of education. In today's case, we're going to talk about what happens when you experience burnout because you have a chronic health condition. So a few months ago, my oldest daughter, tristan, and I did an episode of the podcast about sunflower syndrome. We had recently discovered that she had this rare disorder, and we discovered it on our own. So if you missed that episode, stop here, go to today's show notes at totbuzzsproutcom and get the link for the first episode. Otherwise, you might not really understand what we're talking about. For those of you who heard that episode, we're going to get on with some updates, but beyond that, we're going to discuss how medical issues lead to burnout for a lot of people. Tristan, welcome back. Can you give a summary of our journey up to us discovering that you had sunflower syndrome?
Speaker 1:Oh man, that's a long story, but the short version is that you know, when I was a little kid, I started doing a behavior. I started waving my hand in front of my face, over the right side, and I was misdiagnosed with a tick. And it wasn't until much later, when I turned 15, and I had my first tonic-clonic seizure, which is the grand mal seizure where you're flopping on the floor and unconscious and all that. It wasn't until then that I was diagnosed with epilepsy, and it wasn't. I was 15.
Speaker 1:And then it wasn't until this past year that I even heard about sunflower syndrome, and I'm 34. So it's, it's been a long journey dealing with this, but I finally have some answers now. So, yeah, it feels great. And sunflower syndrome the waving my hand in front of my face is very stereotypical of that. And the reason it's called sunflower syndrome is because when I'm out in the sun or around a bright light, but usually the sun I have an urge, a tendency to turn my head towards the sun like a little sunflower, and when I was a kid I would do that outside and do the hand waving. Um, now the hand waving part has stopped now that I'm on seizure medication, but the urge to turn to the sun is still there.
Speaker 2:Yeah, so we're going to talk a little bit more about that here in just a few minutes, because I want you to tell us. We kind of approached this as this is new information, and with new information, that means we need to contact your neurologist, and you were having some issues at the time when we did the last episode in your work environment, where it was hard to get accommodations that you needed in order to be able to work to your full capacity. Let's just say so, how are things now?
Speaker 1:Things are. They're better. They're pretty much the same, which I'm sure we'll go over, pretty much the same, which I'm sure we'll go over, but it feels good to get closer to the answers that I need. It's still a long journey ahead, but I feel like we're getting closer to the end and that's yeah. So that's kind of where I'm at, just waiting to see where it's going, and there's a lot of things that need to fall in place and it's just kind of a waiting game right now.
Speaker 2:So let's unpack that a little bit, because the last time we did the episode, I think that we were encouraged that, you know, there's a doctor in the United States that is actively advocating for this disorder because it is fairly new and fairly rare, and so we were thinking that we were going to be able to go into the neurologist's office, that you were going to be able to get a diagnosis fairly easily, and that that diagnosis would then lead to what were you hoping of all.
Speaker 1:I mean, it's it's good to have an answer that explains my childhood, explains everything I have gone through, um, and just satisfies that, but it's also it's good to have an actual diagnosis, um, because that's going to let me know.
Speaker 1:I need to know more about this sunflower syndrome and I need a doctor to help me through that. I can't just, you know, I can Google it, I can look at other people's experiences, but I really need the guidance of a doctor to tell me, yes, this is, this is what we can do for you, these are the treatments, these are the things to look out for. This is what might change throughout your life, because epilepsy, your you know brain, brain chemicals and all that changes about every 10 years is what might change throughout your life, because epilepsy, your brain chemicals and all that changes about every 10 years is what I was told by my first neurologist and I have felt that I feel more prone to seizures, I feel more prone to looking towards the sun and I need to know what that is going to look like in the future. That is going to look like in the future. I also need to know, you know, with the actual sunflower syndrome, things that are maybe going on.
Speaker 1:That I don't even know about that have just been normal to me. I need to know these things because I need to know what accommodations I need in the workplace. And I know for regular epilepsy. I know that, if you know, if I have a seizure, if I'm feeling seizure-y, then I have the accommodation in place where I can stay at home, I can take the day off, recuperate, that kind of thing.
Speaker 1:But with sunflower syndrome it's quite different because the seizures you can actually remain conscious through them. So I can talk through the seizures I can. I can resist the urge to look towards the sun or a bright light if I'm thinking about it, if I'm really focused on it, which is another very stereotypical thing of sunflower syndrome. So and I'm sure that makes it even more difficult to diagnose, because with seizures you think that it's something they can't help. But some of them, like these small seizures, you can be aware through it and it's still, you know, it's still the electrical activity going through your brain, it's still a seizure, it's just more of an invisible one. So with any invisible disability or condition it's really important to know about it, have a doctor kind of help you learn more and to know it just helps you know yourself and know what you need to succeed in life, and that's really that's. That's really what I need at this point.
Speaker 2:So you went to the neurologist and you were going with a specific thing in mind that you wanted to have, and you've already alluded to this a little bit. So you have tonic-clonic seizures and, as someone who has seen you go through those, you do not have consciousness or control in those moments when you're having a tonic-clonic seizure. They're very frightening. They're something that you're not even aware of until hours after they happen.
Speaker 2:It takes your brain a while to reset and figure out what happened, but you're talking about basically yeah, I mean honestly it is, but you're talking about other seizures that you're having, so when you went to, you didn't know this. In our last episode we went to the neurologist shortly after we found out about sunflower syndrome. It was a new neurologist. He had heard of this condition.
Speaker 1:Can you kind of. So I actually just I reached out to him and asked about it, about sunflower syndrome, and when I had the appointment he said that he had done some research on it, but before, before then, whenever I asked him about it, he had never heard of it.
Speaker 2:Okay.
Speaker 1:And he was an epilepsy specialist.
Speaker 2:Isn't that crazy, I mean okay, so you went in wanting something specific beyond a diagnosis and you got that. So can you kind of tell us what happened with that and how it increased your own understanding of what's going on with you?
Speaker 1:Yeah, so I had a 72-hour EEG done and I wanted to see what well, my goal was to see if we could catch the sunflower syndrome on the EEG activity. And I thought that I was just having these seizures in the sunlight or around a bright light. But it turns out that I found out that I'm having multiple seizures a day and I didn't even know about it. And then I also have seizure activity when I'm falling asleep, as I'm falling asleep, and then also as I'm waking up, which in the past we'd always thought that that sleep deprivation may be more prone to seizures and that's why I would have them in the morning. But if I'm starting out with seizure activity first thing in the morning as I'm waking up, that I mean that makes sense, why I would have my seizures, the big ones, in the morning. And it's crazy because it you know, I've had EEGs done in the past to diagnose me with epilepsy in the first place, but they were, you know, only an hour long. I was in a control environment in, you know, in the hospital. They would specifically flashlights in my face and that's of course. They caught that. They caught that seizure activity Because it is a I mean, it is photosensitive generalized epilepsy.
Speaker 1:That's that's what I was diagnosed with originally, and with sunflower syndrome. You know you're, I had to have this thing strapped to my head for for three days, uh, because you know it can't be in that, you can't catch it in that controlled environment, because it it takes place outside or around around the bright light, around the sunlight. So, um, yeah, but it was really interesting to know that I'm having several seizures throughout the day that I didn't even know about. And I know that I I flutter my eyes a lot because of my epilepsy, but I always, I guess I didn't realize that those were, um, I, I thought that it was seizure activity, you know, or that it was something related to that, but I didn't realize that even when I'm indoors, even when I am not necessarily fluttering my eyes I don't like catch myself it's I'm still having seizure activity throughout the day that I didn't even know about. So, yeah, I got, I got more than the diagnosis for sure, didn't even know about. So, yeah, I got, I got more than the diagnosis for sure yeah, but.
Speaker 1:I mean that's, that's just one step closer to getting what I need, cause you know 34 years and I have never known that I'm having those many seizures.
Speaker 2:And I wonder for our listeners who have sunflower syndrome themselves or have children who have sunflower syndrome, because I wouldn't have thought of this. You are the one that said I think I might be having seizure activity outside of the tonic-clonic seizures, but it's different, but I can't tell you why. And you had, I think, read online somewhere about a 72-hour EEG.
Speaker 1:Yeah, yeah, it was a video EEG and I told them that it needed to happen. It needed to be something mobile that I could take with me. And they actually it was difficult to get because I was my neurologist was on board with it. He told me that there was the like, the technology existed that I could, they could hook me up to the machine and and then I could just carry it around with me and it would record video and it record the activity at the same time.
Speaker 1:And the process of getting that was difficult because I called the company that had to schedule it to come out, because it was not the same as the hospital, it was its own separate company. And then when I got a hold of them, they were saying oh, we see that you're going to have a video EEG. We'll come in and put a stationary um camera in there. And so I had to explain so many times to so many different people that just that don't have access to my medical notes. They don't. They don't know exactly what, what they're, what I'm trying to catch on the ATG.
Speaker 2:Yeah, they didn't understand the why behind what? You were doing.
Speaker 1:And what's crazy is that, um, you know, they they don't understand the why and so it makes them they don't. They really don't need to understand the why in order to set it up, you know. But because I am not, I'm the patient, Um it's, I'm kind of in that role where, um, you know, the neurologist sent the orders but, um, you know, they were thinking it was something else. Basically, they just.
Speaker 1:Whenever I tried to explain it, I really really had to push for anybody to listen to me, for anyone to take me seriously, and it took forever to get that scheduled out and set it up. I they said, yeah, we're going to do a video EEG with a stationary camera. And I was thinking, oh, my goodness, I have spent weeks talking to people trying to trying to make you understand that it's the mobile one that I need, the mobile device that you guys have and you can set it up. So, so, even like the, even the day before that they were going to come set it up, the person, the tech who was going to, you know, put all the wires on me, didn't even know until until I said something again to like the sixth person it's just, it's so much hassle, so much.
Speaker 2:Yes, it was, and I was there when you had it done. It was time and it was hilarious looking. You look like an alien. Actually, people thought you had brain surgery.
Speaker 1:So I actually had to carry that. So I had to carry it to work with me and, of course, work with me, and of course we had a meeting with principals, superintendents and I work in education and I am not at the I'm nowhere near the administrator level. So for me to be in there like me, the lowly computer person you know to come into this meeting, yeah, Looking like I have had a very serious operation done, or looking like I am, you know, something out of a science fiction movie. Um, that that was, that was an experience, but they were very nice to me, though, I gotta say, but they were very nice to me though I got to say, yeah, everybody's going to treat you very like carefully, make sure they're being helpful.
Speaker 2:I think when they see something, it looked a little scary right, it looked like you had really been through something and you kind of were.
Speaker 1:The tech, remember, at the end he said he was removing all the wires and the little cap that was made of tape Because, I mean, that was the only way that they could, you know, get it to stick. And he said at the end he was like do you want to keep all these wires? Do you want to keep this little helmet thing? And for a minute I was like that was in October. So I was like, well, halloween is coming up and I did get a lot of sympathy from my coworkers, so maybe, but no wait, oh boy.
Speaker 2:Yeah, well, so you had that done and you got the results back and we found out you were having seizure activity a lot throughout the day. How has that changed anything for you, knowing that?
Speaker 1:um, well, I am more aware of, uh, you know what my, what my body feels like. I'm more aware of, uh, now that I know the, that I'm having these even indoors, just throughout the day and whenever I'm falling asleep, waking up so many times. I know to listen to my body a little more and it's there's a reason why that this is happening, right, which means that there is something that it's making me advocate for more change, because my medicine that I've been taking for almost 20 years is not as effective as it used to be. And, uh, so when the neurologist said that he, what he, you know, he, he was like, yeah, we detected seizure activity, but you know, I, I don't know what, what more you want? Um, like, well, I, I would like for that to be fixed. I don't know, can we address it? Um, yeah, so I'm looking for for some sort of change. So either give me the official diagnosis of sunflower syndrome, refer me to the specialist that deals specifically with sunflower syndrome, or change my treatment, because right now, I mean, if nothing changes, nothing changes, nothing changes, nothing changes. So I need I but, yeah, I, I need something to change in my life to to keep moving forward with this because I do have, uh, I do have concerns.
Speaker 1:I feel a little bit, um, held back by my epilepsy in some areas, and it's nowhere near as bad as a lot of people who have seizure disorders. Um, I don't have the big tonic-clonic seizures every day. Those ones are controlled by medication as long as I stand on top of it. But so I, I mean I do feel very grateful that, um, that overall, my, my condition is, you know, manageable, but In my mind it's my life. You know I could be living even more normally, you know I could. There's so many things that I could do that I didn't think I could do before. But I need, I need someone to. I need the doctor to help me find the path there, help me find my own path, but he needs to for some. My current neurologist or the specialist, or somebody, needs to listen to me. That's what it really is. Someone needs to listen to me, listen to me, that's what it really is.
Speaker 1:Someone needs to listen to me.
Speaker 2:So if I were going to break this down, if I were going to break this down, I would say you had the EEG done. It confirmed for you something that you suspected. Not only did it confirm that you were having a different type of seizure activity, but it also confirmed that it was a lot more than you even anticipated and your hope was that that would change your treatment plan so that you did not have to live in fear of having a seizure all of the time. Also, just that feeling you called it seizure-y is a pretty uncomfortable place to be.
Speaker 1:Yeah, Well, and this is another thing, since I have gotten the results of the EEG, I told you I'm being more aware of my body and recognizing things and actually right now I feel not super seizure-y but I can, now that I'm aware, more aware of it, now that I've been listening to my body again, you know, watching out for these things, I can feel, just from the stress of talking about all of the, the roadblocks, all of the frustration so far, that thinking about all of that is actually triggering a little bit of that seizure feeling, which, that is one of my triggers, is stress.
Speaker 1:So if it's high stress, when I I do flutter my eyes a lot, Um, but I I feel that, um, I feel that urge because I know, I know that I have the urge to turn towards the sun. But whenever I'm in a in a stressful state, whenever I'm thinking about something stressful or really stressed out, I I feel it in that same spot when my above my right eyebrow, same spot in my above my right eyebrow, but I feel it like behind my eyes and it's like an urge to flutter my eyes and urge to like, do like a really hard blink. It's. It's just a very, yeah, very odd, uncomfortable feeling odd, uncomfortable feeling.
Speaker 2:So you had the validation that this was not a behavior that you had adopted, it was something that was very real, that was happening beyond your control. So you take this in, for your neurologist has the information, you to sit down and discuss it, and your hope was a change in treatment plan or for him to say I believe you have sunflower syndrome, I'm going to put in a recommendation or referral for you to go see a specialist about this. And so to kind of summarize it and pull it all together, he said epilepsy is rare. Photosensitive epilepsy, which you definitely have, is even more rare. And then there is this condition that's under the umbrella of photosensitive epilepsy, which is sunflower syndrome. But we would treat that the way we would treat any type of photosensitive epilepsy. Therefore, he's kind of had the attitude of there's nothing more they can do for you. Is that correct, yeah?
Speaker 1:Yeah, and this is why I'm saying, yeah, you can do more, you can change my treatment, because I'm still having these seizures.
Speaker 2:Yeah, so, um, how much money do you think you have spent since the last time we got together and did a podcast about this? So we'll say six months ago, the last six months, how much have you spent on seizure medication, doctor's appointment visits? I don't know if you had to pay anything for the EEG, all of those things for the EEG, all of those things I got to say.
Speaker 1:I have not gotten the bill for the EEG because I'm pretty sure it's because the company was so bad at communicating with me and there were so many issues with that. I think that they kind of dropped that for me. Um, well, that's nice.
Speaker 1:Grateful for that Cause. That would have been about $1,500. Um. I've spent I don't even know how much in my seizure medicine. Um, yeah, I've a few hundred in the past. You know, six months probably. Um. The doctor visit for a specialist is um. With my insurance I think it's $70, um for one visit. How?
Speaker 2:many times have you gone in the last six months?
Speaker 1:The last six months. I want to I can't remember if I I think I've gone twice Um, I have another one, or maybe just once. I have another one coming up next month. Um, because I'm really pushing. I, I am really really pushing for a referral for my doctor to do something, to do something, and I they were going to make me wait until May and I, I'm a nice person and I don't want to be mean, but I had to be not not mean, but very blunt, very direct and say this this is what I want. Um, I need you to work with me and these are my concerns and I mean, that's all I could do.
Speaker 2:but but it took that for me to finally again have somebody listen to me and take me seriously so I'm going to transition us a little bit towards the the burnout path here, but before I leave this EEG, if you have sunflower syndrome or you have a child that has sunflower syndrome and it obviously is very expensive but if you can get this 72-hour EEG done, I do believe that it could have been a game changer for you, tristan, when you were in school, because we would have known you were having seizure activity first thing in the morning, last thing at night as you were falling asleep. We would have known you were having it throughout the day. We could have set up different accommodations than the ones that we had, because we just were flying blind before you had your first tonic-clonic seizure and then the accommodations we had were all around seizure, aftercare. They were not proactive accommodations, because we just didn't understand what we were dealing with, because we were kind of figuring it out on our own.
Speaker 2:And I don't blame the school system for that, because although they fought us at every turn, they they certainly didn't have the knowledge themselves either. They're not medical professionals.
Speaker 1:So I do want to say to you so sunflower syndrome. So I read that this may be, updated now that only about 1300 people have been diagnosed with it, but there's probably more. There's probably a lot more because of misdiagnosis. You know, getting misdiagnosed and not being taken seriously, that kind of stuff and it's. It's usually diagnosed in childhood, and so my I do want to say I'm sure there are people out there that might relate to some of this, but you know, not sure if they have you know the if it's sunflower syndrome, if it's, you know if it's a tick or something, but it's very specific.
Speaker 1:So I do want to say, before we keep moving on, is that if you think that you or your child or someone that you know is having these kind of seizures, record it. Definitely record it, if you can Catch it on video because it's so specific. So what happens is, of course, you turn your face to the sun and you wave one hand in front of your face. So I know, not everyone's going to watch video, but I'm gonna show it real quick if that's okay, go for it Of what it would look like, okay?
Speaker 1:So when I was a kid, I would turn to the sun and I would do this. So I'm just like waving my hand in front of my face, right where my eyebrow is, and I would do it so much that I would have a raw spot around my eyebrow. It would just be red, it would be irritated, and that's where I feel that whenever I feel the urge to turn to the sun, I feel like a, like a phantom, a phantom urge, a phantom, like heat almost above my eyebrow, right where I used to wave, so um. So if that's relatable, if you've seen somebody you know do that kind of behavior, yeah then uh, I mean it might be worth checking out.
Speaker 1:And it does start with, uh, turning to the sun. The hand waving usually comes later. So, you know, even if if it's that, just that part without the hand waving, still still check it out, if you can still get it on video. That's the that's I wish we. I wish we had something, because all we have is memories, you know, all we have is stories from other people, and so if a doctor won't listen to me, he's not going to listen to anyone else from other people.
Speaker 2:And so if the doctor won't listen to me, he's not going to listen to anyone else. Well, and the doctor even said well, you're not doing the hand waving now. So you know it's more than just the hand waving, though, because I don't think it is super rare that when you enter into adulthood, people who have this some of them do stop hand waving. It doesn't mean that they no longer have seizure activity, though.
Speaker 1:And you know I remember. I mean, I was a teenager when I stopped hand waving. And you know what's crazy? I started having tonic-clonic seizures when I was 15. I got diagnosed with epilepsy when I was 15. I got diagnosed with epilepsy when I was 15. I started taking medicine for epilepsy when I was 15. And guess what? The hand waving stopped when I was 15.
Speaker 2:Isn't that crazy that you know I have waving stopped, yeah.
Speaker 2:Yeah well, there's that, but we also know that the small seizure activity did not stop, though, and I just think that's crucial, because if the brain is having even a small reset, a glitch, multiple times throughout the day, things become very challenging for the person who is experiencing that. You're having to spend a lot more time concentrating and focusing and trying to learn if you're in school, not to mention all of the things that we are doing when we are 15, 16, 17, 18. You had your first job during this time. You learned to drive a car. During this time, I mean multiple things that your brain was kind of actively working against you while you were learning. So that's what we use our brain for. Is that function? It's not the only thing we use it for.
Speaker 1:I'm so glad that I got that, that even the just the regular generalized epilepsy diagnosis because when that hand waving stopped is another thing too. Um, it made things so much easier as far as my social life went. Um, yeah, that's so that that's one reason for sure to to ask for, you know, to push for some sort of diagnosis for treatment, because even if even if it doesn't, it didn't help with all of the seizures, that's that alone that helped a lot. It didn't, you know, the medicine didn't solve everything, but it made my life better, that's for sure.
Speaker 2:Yeah, it definitely did. So all of these things we're talking about. I want to give everybody a reminder of what burnout is. Chronic stress is when we have stress, when something happens that triggers our fight, flight, freeze or fawn, you know, those things that make us stop and react without really thinking about how we're going to react. It's just what we, what we do, so you can have that happen once and have your reaction. But when you are put in that state over and over and over, when you're being triggered over and over and over, we call that chronic stress.
Speaker 2:When you are in chronic stress for a period of time, eventually you're kind of staying in that heightened response mode you are getting into. I think it's the amygdala and kind of staying there way longer than you should be which throws off so many things in your body chemically. It's not good for your health, it's not good for your mental health and we end up in burnout when we get to that place where we've been there too long and so, because we can't stay in that heightened response to a threat state 24-7, our body is trying to combat that and what burnout looks like? A lot of hope, apathy, trying not to care, not caring, cynicism you just assume that things are going to be bad. Negativity you find the negative in everything fatigue, often physical problems, just not being able to life and so I tried to find some statistics on burnout for people who have a chronic health condition and I did find a pretty good definition that I'm going to read, not about burnout, but what actually qualifies something to be labeled a chronic disease or chronic illness. So, according to the National Institute of Mental Health, a chronic illness or disease is defined as a condition that lasts at least one year and requires ongoing medical attention or limits activities of daily living, or both. Examples of chronic diseases include autoimmune diseases, diabetes, cancer, epilepsy, heart disease, hiv, aids, hypothyroidism, multiple sclerosis and pain. So that definition can be found.
Speaker 2:I will put the link in today's show notes. But it's the National Institute of Mental Health. Because when people are experiencing that level of chronic stress for any of those reasons I just read, it puts them in that burnout phase. And you know what? We have tons of data about how, when people have these chronic illnesses, how it affects like the taxpayer dollar. So it's like, oh well, these diseases are costing this much money in the medical system every year. We don't talk about how much it's costing the people who are going through it, and it was really frustrating for me that I couldn't find a lot of good, solid information about that. I couldn't find a lot of good, solid information about that. However, there is a lot of information about the.
Speaker 2:We have had a connection that has been out there for a long time between depression and chronic illness, but, as I mentioned before, depression can be just one piece of burnout. However, burnout is becoming pretty prevalent and talked about in a lot of areas, and Tristan and I decided that this needed to be talked about because, like I said, depression is part of a bigger burnout picture when you have chronic illness. So there are all kinds of issues that people with chronic illnesses face, not just for a little bit. I just had the flu. It was, if I'm being honest, two weeks of hell. I ended up having to go to the doctor get antibiotics, but at the end of the day I was done with it.
Speaker 2:You said you're 34 years old. You have been doing this since you were seven. I'm a pro. That's a lot of years, so we're going to go through this. We made a list of areas that you have been affected by for way more than a year that other people aren't affected by. I mean, this is what you have to live with and I want this information out there because if you know, if you're a listener and you know anyone with a chronic health issue, I hope that you will think about this the next time you're thinking about that person. So first one that I've already brought it up, but let's unpack it a little bit. More financial issues. Can you tell us how your financial history is different than mine? I've never had a chronic health issue. What things have you had to pay for that I probably didn't.
Speaker 1:I probably didn't.
Speaker 2:Well, I have had to pay for medical expenses.
Speaker 1:What kind of medical? Yeah, so medical expenses, oh my God, and all sorts. So my medication, I've had to pay for that. I've had to pay for so many doctor's visits. I've had to pay for the EEGs, which I've had, several of them throughout my life. I've had to pay for an ambulance before, which that's pretty expensive.
Speaker 2:Um, so to be clear here, I just want to say that when you have a seizure, you're unconscious and even when you regain consciousness you don't remember. And if you have a seizure, people call an ambulance and then you and your insurance are responsible for that ambulance.
Speaker 1:Okay, sorry, yeah, I am another expense. It's cheap transportation because if, if I have a seizure in in my state, you're not supposed to drive for six months, it's really hard to, you know, get to a job when you live in the midwest in the US where there's everyone drives because they're. You know, public transportation is fine, but you know, if you work outside of your town, that's, or if you work in a smaller town, I mean you're not going to have that and I can't afford to pay for, you know, an Uber every single day to get to and from work. But you know, several years ago I did have to ride the bus and it was about an hour and a half to get to work, hour and a half back within the same town. But yeah, I mean, so I I would pay a little bit for, for bus tickets too, but so that was another expense, bus tickets too, but so that was another expense I've had to pay for, I guess, like related visits, related doctor's visits.
Speaker 1:So if I there have been a couple times where I've had to go to urgent care, which is expensive, more expensive than a regular doctor, which is expensive, more expensive than a regular doctor, um, but I've had to do that because if I have a seizure, um, it's possible that I could have a concussion, um, and I don't want to go to the ER every time to get, you know, checked for that, but I can go to urgent care.
Speaker 1:Um, I also have been to urgent care because I, uh, bite down on my tongue so hard that I, I've, uh, I mean I, I bit a hole in my tongue at one point and I had to go. Um, I had to go to urgent care, um, and they you know that was another another thing where the the doctor, I, I went in and said I would like some painkillers because I bit my tongue, I had a seizure and bit my tongue, and the doctor was like, oh, I mean, if you just use some like orgel, like lidocaine stuff, that would be fine. And then I opened my mouth and I showed her my tongue and she was like, well, maybe we'll give you some Percocet too, but you know it took that. It took that it took me saying, look, here is my, my mangled tongue, like, here's the hole in it. You know, for her to listen to me again.
Speaker 2:So you know. My next bullet point here is the social emotional piece, and you've already alluded to this, but I think a lot of this has happened within the medical community, like having to beg for something that you need, like Percocet, because you bit a hole in your tongue, and not being taken seriously. Can you tell the story about your birth control?
Speaker 1:Oh my God, yes, I can. Okay, so you know I. So I had this experience a couple years ago where I had, I'd had a cold or something and I just I still had a lingering cough and I just know I knew that I needed to go get like antibiotics or you know a steroid or something to just help my body get over the last of it. So I went to the doctor for a cough. I literally went in just for a cough. And you know, when you go in, they, the nurse, comes in, takes all your vitals and stuff and then make sure that your medication list is up to date, all that kind of stuff. So I told her that, you know, when she said, are you still taking birth control, I said no, um, she didn't really question it, the nurse didn't, and I stopped taking it because it had. It was just giving me so many issues. Um, it was making me feel really bad. I was having all sorts of gynecological issues. Uh, I just it was making me gain weight. I got very depressed. I mean it just it was messing with my hormones too much, it was messing with my body too much, so I stopped taking it. So when I went in for the cough.
Speaker 1:The doctor came in and I told her I was having this cough still. She said that she was going to give me antibiotics and that should clear right up. I was like, great, okay, visit over. So I was getting ready to leave and she had left the office for a second and then she came back in really quick and said are you still taking birth control? And I said no, she was like why not? So then I told her like these health issues. Then she said, um, she said that I needed to be on birth control. She said that, uh, because of the medicines that I take, that I needed to be on birth control. And I said okay, well, I don't want to do that. Was in front of the doorway so I could not get around her. And she basically said she said okay, I know you, you took that one pill. What about a different pill? I said I don't want to take that. And she said, okay, well, you know you as a woman, um, in your reproductive years you need to be on birth control. I couldn't convince her that I wasn't. It was okay for me to not take birth control. And she said that I needed to be. I needed to walk out there with some sort of plan to be on birth control.
Speaker 1:She really did not want me to to do anything except for hormonal birth control, and so I told her I wasn't going to take it and I wasn't going to do any of the things, and I was getting so fed up. She wasn't listening to me and she said that she has a legal responsibility to protect the fetus and that's why she was pushing for me to do something. And to me I'm like what fetus? Something and and to me, I'm like what fetus. She said that I was on medicines that you know that I needed to be on birth control for, so, so, yeah, for her to have a responsibility to protect the fetus. That did not exist. And you know, rather than me, the living, breathing person, you know, rather than me, the living, breathing person, it doesn't matter if I am having issues, Doesn't matter if, if I am in pain from birth control, doesn't none of those things matter? This we'd have to protect the, the non-existent fetus, that's. That was the main thing.
Speaker 2:What medications was she trying to?
Speaker 1:She, well, the only thing that she had ever prescribed me besides, you know, antibiotics like regular stuff like that was a muscle relaxer, because I have, like lockjaw TMJ flare ups, so when that happens I have to. You know, for like a week I have to take a muscle relaxer at night because I'll grind my teeth really bad. Know, for like a week I have to take a muscle relaxer at night because I'll grind my teeth really bad. That was the only one that she was prescribing at the time. But she said that she was going to contact my other doctors and have them stop prescribing me medicine, which included my seizure medicine that she did not prescribe that was my neurologist that prescribed it. Seizure medicine that she did not prescribe that was my neurologist that prescribed it. And she basically said well, if you're not going to take birth control, then I guess I'm going to have to do this. So I finally, after like 45 minutes of talking to her, I said, fine, write me a prescription for a pill. And so she did.
Speaker 1:I never picked it up, but yeah, so I went home that day, um sobbing, and when I got home I counted up my seizure medication. I counted up all the pills I had and thought, maybe, like, was thinking of um, how I, how far I could stretch it out, how long I could make it last, maybe if I cut them in half, um, and, just you know, avoided the sun, maybe if I, um, if I did something, you know, if I don't know anything that I could do to not have seizures because she was going to take my medicines away and then I wouldn't have. Those are my two options birth control or, um, no seizure medication. And I, I mean that was the first time that I really experienced, um, the panic of not having control of my, you know, the decisions for my own body, because it was going to affect other things in my life.
Speaker 1:It wasn't just about, you know. She said she was going to protect the fetus, but it wasn't even about that. To me, it was not having control over something that affects every aspect of my life. So not even a fetus, not a baby, nothing. She was going to take my seizure medicine away.
Speaker 2:You said this was the first time. Has it happened again?
Speaker 1:Yeah, I mean, I would say this whole process in the past several months has kind of been not that bad, but it's kind of felt similar, just that I that feeling that someone else knows what's best for me, someone else who has never lived my life, someone who doesn't know me, someone who doesn't even know that like what, what my problems are, unless they read my notes again, because I already forgot who I am.
Speaker 2:Somebody like that is making decisions that affect my entire life, making decisions that affect my entire life and I feel like I have no say in it unless I scream, you know, and then maybe someone will hear me, and it's not just the medical community that has all the power and gets to decide what's best for you, regardless of what you say, because I know you've had some issues in your workplace and I know you don't bear any grudges towards them. But can you talk a little bit about some of the things that people who have a chronic illness face as far as their employers, that the rest of us don't?
Speaker 1:Yes, but I do want to say something about the birth control. First, because I'm sure that other women probably have experienced similar things. But just if anyone else relates to this, just so you know, just so everyone knows, a doctor cannot take away medications that another doctor has prescribed. They cannot talk to that doctor without your permission to make any changes on your behalf. They cannot do that. That's very illegal. They have a legal responsibility to treat you as a patient first and foremost. That's it. That's they have to treat you first.
Speaker 1:And, um, I only realized all of that because I called um. Well, I what, it was actually one of my neighbors, one of my friends, that um, that saw how distraught I was and he works at a pharmacy. He said, hey, here's the number for this pharmacist that I work with. You should call her, and she's very supportive of of women, uh, women's rights, um, you know, women's healthcare, that kind of stuff. I called and she, she said, yeah, a doctor, they can't do that.
Speaker 1:So apparently there's this thing called a REMS list, r-e-m-s, and that is a list of medications that do require birth control, because the risk is of birth defects is incredibly high. You know, it's almost guaranteed it's. It's that serious. It's a very small list. It's not super common medications. She looked up all of my medicines that I'm taking. She said, yeah, women take all of these all the time. She you know, seizure medicine is the one I'm on is the safest one to take for pregnancy. It's the. It's the safest one in general for for women's health and I'm taking Lamictal so that's a very, very safe one if anyone needs to do that. But none of the medications were dangerous whatsoever. She said, yeah, you're fine.
Speaker 2:Yeah, so let's switch over to employers now. What are the types of things that people who suffer with chronic illness face, that the rest of us aren't?
Speaker 1:Um, well, there's uh, there's always the the stigma first of all, um, especially if it's uh, an invisible condition. So people don't know that I have epilepsy until they see me have a seizure. Or I mean, if I tell them, they think well, you don't, you aren't having seizures every day, you know that kind of thing. Um, so, requesting accommodations, there's something that that feels weird about that. Um, just because an employer, um, that might be um, um, that might be um it just worried about like, how it's going to look on you. Because if, like me requesting accommodations to stay home if I have a seizure, um, I just, I just know that if I do, if I do, actually, unless I, I have a big seizure.
Speaker 1:Because there are, there are times in the morning where I feel weird enough that I don't want to drive, I'm not ready to drive to work, I am worried that I'm going to have a seizure, and so I will um tell my boss hey, I need to come in late, um, I need more time to get over the seizure, feeling that kind of thing, and I just there's something about that um that it makes me worry about my job security.
Speaker 1:I know they can't like no one can, you know, actually like fire you for requesting accommodations, that kind of thing. But they, they always have the potential to make it not a great work environment or to have that eye on you where they think I think maybe you just don't want to work as much you know, and that's not what it is. It's that I'm afraid, if I get on the road, that I'm going to have a seizure and I don't want to find out, so let me come in 30 minutes late, but it seems that I don't know. So there's that kind of thing where you and maybe that's more of a regional thing you know a cultural thing, because in the Midwest it's, you know.
Speaker 2:I don't think so. I think that oftentimes, when people get accommodations or ask for accommodations for a variety of things, Other people have a tendency to and I don't know if it comes from a place of jealousy or just judgment that they're being allowed to do something that the other people aren't. But I would say, even when people are pregnant and they can't lift something and you have to call somebody else to do it, you'll see eye rolls and things like that, um, where the person has a very obvious condition that keeps them from doing it. But people still tend to have that kind of attitude Not everyone, obviously.
Speaker 1:And I think a lot of that comes from you know, people will look at somebody who's struggling and say, well, like with pregnancy, well, other pregnant women can lift things. Why can't you? There's that attitude which other people can do this, or I can do it. Why? Why are you any different? Maybe you just need to try harder that kind of thing. So, yeah, yeah, and it's the same. So I have very bad generalized anxiety disorder as well, and that is something that I deal with on like a daily basis. That kind of attitude of when I say I need to do something, remove myself from a situation or something, whatever the case may be. If I voice that, then I get a lot of not outward judgment. But even when people are being polite, even when they're like, okay, I understand you, sometimes you can just tell that they think that you're I don't want to say that you're weak, that's not necessarily it, but that you aren't good enough. But that you aren't good enough. That's kind of that, that feeling.
Speaker 1:Or that yeah.
Speaker 2:I was just going to say you're kind of making me see that, on the employment front, if you have a chronic illness, you know you're you're already a step behind because you're having to apologize and make people understand something that's so out of your control and you're also not going to be the people that are first in line for promotions if you're having to, you know, take care of your illness or your disease also well and like with, uh, like with the anxiety thing.
Speaker 1:You know there's a difference between stress, which is, um, very normal, it's healthy, um, and you know the short term it can, a little stress can be healthy, but, um, there's a difference between that and anxiety.
Speaker 1:The kind of anxiety that I have, uh, where it's, it is like uncontrollable, basically, and so so, going back to that um, that kind of stigma thing, I can't tell you how many times that I, if I say I have like really bad anxiety, then other people are like, yeah, I get stressed a lot too, like, I don't think you understand, when I was growing up it's better, a little bit better now, but when I was growing up, you know this, we would go out to a restaurant.
Speaker 1:I would be so anxious that I, you know, would eat like two bites and then go get sick in the bathroom just because my stomach, I was so anxious, my stomach was just constantly upset and that was, that was as a kid, and that wasn't anything that like. Sometimes there weren't even any like triggers, it was just my, my, it was just the way my brain was working and yeah, and there are so many things that that I have to do that or I have to be aware of that other people who don't struggle with the things that I do. They don't. They don't even think about these things.
Speaker 2:So the final bullet point I have on there is how is navigating the healthcare system different for you than for someone like me that doesn't have? Well, I'm getting old, so I'm getting healthcare issues, but I don't have a chronic health condition that I've had to attend to my whole life that has that I've had to attend to my whole life.
Speaker 1:Well, I'd say one difference is that you probably have not had to explain the same thing to every doctor and every nurse every single time you, you know, see any sort of new doctor, and actually, with the sunflower syndrome thing, when I finally made enough of a fuss in their eyes, I'm sure that they bumped my appointment up. That was supposed to be in May, so I'm going to go see the next month, in February, but they one of the options I was given was to see a different doctor who could get me in a little sooner, and I said Nope, I am not going to explain my whole, explain your history of treatment. You know when a doctor said well, what about this? You know, let's do this and this. Yes, we've already tried all these things.
Speaker 1:It's just very exhausting to go through that and I wish that I could, you know, record a presentation every time I come in, like here's my history. Watch this hour-long presentation and you'll understand everything that you don't need to discuss because we've already been through it. I've already been through it in my life. God, yeah, um, god, yeah. So that's probably the biggest thing that I've got, this, this history, and then I have to hear the same recommendations over and over and over and again, because it's hard to get a doctor to listen to you. It doesn't matter if you say I've already tried this a lot of time. They say, well, let's try it again, because it you know, they want to see the results. Well, let's try it again, because it you know they want to see the results, they want to see what happens. They don't think that you did it right. Um, or maybe you should try again, you know. Just, whatever, whatever the excuse is, it's uh, it's just a nightmare, but that's probably the biggest difference.
Speaker 2:So let me ask you this Do you feel, through this process, you've ever gotten burnout?
Speaker 1:Oh, 100%. I feel like I'm going through a burnout right now. Honestly, what do you?
Speaker 2:do. Do you have any strategies that you use when you're at this burnout place?
Speaker 1:A lot of my strategy revolves. I mean, I know that burnout I've experienced this before, whether it's for medical reasons or work or whatever. Whatever has caused it or contributed to it. I know, unfortunately, that the only way that I can really get past it is with rest, a break and having to deal with it. And that's so hard when it's an ongoing thing all the time. And I just I don't think that I'm going to get over the burnout until I get a doctor to listen to me, until I move forward with the treatment.
Speaker 1:So right now, to manage it and to um make it a little bit easier on myself is I have to have distractions. I have to make sure that I'm in a good, you know, sleep routine, which you know they'll say. This is another thing. Doctors will always say how's your sleep, how's your diet and exercise? Diet and exercise and good sleep is not going to cure my epilepsy, it's not going to cure my anxiety. The issues that I'm dealing with. They're going to help. I know that they do help because I've tried them. I've, you know I do feel better when I'm eating well, when I'm, you know, getting some exercise in that kind of thing.
Speaker 1:But the problem does not go away, it is not cured, it's not enough, so I have to find ways myself to deal with things. So for me, having projects to focus on is really helpful. So like I like to do crafts and stuff, so I like to knit and write just small things that just kind of give me something to do. I really like doing something with my, with my hands, like knitting or crocheting, because I part of the burnout is that I am dealing with this so often like an everyday thing and I'm dealing with so many other things that my brain does not have time to process all of the emotions behind it and it doesn't have time to process a solution or how to move forward. So when I'm doing something with my hands, I'm knitting, that kind of it gives me enough space in the back of my mind to you know, subconsciously kind of go through all of the things that I'm dealing with but gives you that process time.
Speaker 1:Yeah, yeah, but ultimately I know it's just going to take rest to fully get over it it's going to, I mean, the same thing that causes burnout in the first place. You have to remove that from your life in order to get past it right, or you have to change it in your life. So if someone's really burned out at work, which is also I'm dealing with that as well that's a different story. But people that deal with burnout at work, you need a break from work. You need to remove whatever is causing that, or else it's never going to get better.
Speaker 2:I think that's. What makes having a chronic disease or illness so hard, though, is that you can't remove that. So what's your advice for anybody out there that has a chronic illness that is just burnout from the doctors, not listening from the medication and the side effects, from the judgment from the people around them. What advice do you have for them?
Speaker 1:One of the pieces of advice that I would give someone, and maybe this is just something that has helped me. It might not help everyone, but having someone go with you to a doctor's appointment kind of helps. I mean, it might seem weird or, you know, it might seem like kind of embarrassing to ask someone to go to a doctor's appointment with you, cause it kind of feels like a like a kid thing, you know. But but seriously, having someone else there who is listening, um, who was expecting something from the doctor and who isn't, isn't part of your treatment. There's. There's something about that extra pressure that, you know, that kind of makes doctors listen a little bit more. But even then, even then the it might. It might not get you where you want to go, but but it does help, especially if the person has a very stone cold face. That helps a lot too.
Speaker 2:Just saying, I'm going to piggyback on that and say so two things. I've heard you say sleep, prioritize your rest, and now I'm hearing you say support. So, especially with a chronic health condition, you need support. And so I'm in Portugal, you're in Kansas, but Tristan did for this first neurologist appointment, she just FaceTimed me and I was just there on speaker and hearing everything that was being said there and on speaker and hearing everything that was being said. If you don't have someone right there or someone available to go with you, or even somebody available to FaceTime, I would say record, record the appointment, tell the doctor I'm going to record this so that I don't forget anything and then have someone sit down with you and go through it with you so you can still have that support, just maybe not in real time.
Speaker 1:That's a good idea, because there are times when I've gone to a doctor and the way that they tell me things makes me feel like great, finally, I know I'm going to get like the treatment that I want, and then they make me feel that way in the moment, but then whenever I leave, by the end of it I'm like it doesn't feel like we addressed the things that needed to be addressed.
Speaker 2:Yeah, and having a second set of ears go over that with you can be an amazing thing. Tristan, I want to say thank you so much for being willing to come on here and do this a second time. I do think it helps every time we get information out. Anything you want to leave our listeners with today.
Speaker 1:Yes, for anyone who has a chronic illness, for anyone who doesn't have a chronic illness and just feels unheard. Advocate for yourself 100%. Get loud if you need to. You do not have to be nice to everyone you, but you deserve to be heard.
Speaker 2:And you're paying those people you are paying them to, for them to listen to you. So I always remind myself of that when I go to the doctor. This is my time slot, I'm paying for it, so it becomes hard to have a voice sometimes in those situations. But you're not there to make friends, right? You are there to to get answers oftentimes so all right. Thank you so much for coming on thank you for having me again.
Speaker 2:Today's episode was produced and edited by me. The theme music is by Otis McDonald featuring Joni Ines. If you know someone who might enjoy these conversations, please share the podcast episodes as much and as often as you can. It's as simple as copying the link you use to access today's episode and sending it in a message or sharing it on social media. I'm a small, independent operation and your shares broaden our audience. Perhaps you or someone you know will be inspired to talk about teacher burnout. If you would like to get your voice on my podcast, contact me via the link on my webpage taughtbuzzsproutcom. Coach, speaker and author Rashid Ogunlaro said it may take many voices for people to hear the same message. Join me in being one of the many voices rising up to get the message out around educator burnout.
Speaker 2:This is Melissa LaFleur. Thank you for listening to TAUT the podcast. I have an important reminder slash disclaimer to share. The views, thoughts and opinions expressed by the hosts and guests on this podcast are their own and do not necessarily reflect the official policy or position of any other agency, organization, employer or company. Content provided on this podcast is for informational and entertainment purposes only and should not be taken as professional advice. We encourage you to do your own research and consult with qualified professionals before making any decisions based on the information discussed in this or any other episode. Additionally, any opinions or statements made during the podcast are not intended to malign any religion, ethnic group, club, organization, company or individual Listener. Discretion is advised. Thank you for tuning in.