Episode 5: Diana's Story — DYSUNDERSTOOD

The Dysunderstood Podcast

Episode 5: Diana’s Story

Welcome to the Dysunderstood podcast. I'm your host, Ella Eastin.

Welcome back to Dysunderstood. Today, our guest is Diana Hansen. Diana is from Derwood, Maryland, and was diagnosed with POTS and MECFS in 2016 during her collegiate swimming career. Diana got her law degree in 2021 and now works as a lawyer in Maryland. Diana was actually our first Dysunderstood community author to share her story on the blog in summer of 2022.

So it's super exciting to have her back with us. In this episode, Diana reflects on the life changing experience that was receiving and living with her diagnoses. She talks about the importance of her relationships, including her recent engagement, and balancing everything in life with a chronic illness.

Yay! Well, thank you so much for joining me. If you'd like to read or listen to Diana's story or this episode, you can find it on Dysunderstood. com slash blog, or continue listening. So I hope you enjoy. And I appreciate you taking the time with the busy, um, life that you're leading these days. Um, but for the audience, um, Diana was actually the very first, um, Dysunderstood author.

Um, you can find her story at the very bottom of our blog page, um, as she contributed her story, um, to start off Dysunderstood. Um, author community, so thank you for that. Um, we're always, like, so grateful for, um, you know, what you're contributing, um, to Dysunderstood, and I appreciate you as a friend, um, and I think that's something that's, like, really unique about this community, um, we had never met each other until about a year and a half ago, I think, maybe a year, I don't know, time has flown by.

So, yeah. Um, but we became fast friends. I feel like because we have had so many shared experiences. Um, not only as swimmers, but, um, just managing our just challenging health circumstances. Um, and I think that it's, there's a mutual, um, understanding there that. Um, it's hard to find, um, in a lot of different spaces, so, um, I'm grateful for that as well.

Um, so much, me too. Um, so do you mind sharing with, um, the listeners the elevator pitch version of kind of how you came to your diagnosis? Um, they can read that longer story on the website. Um, but it would be great to, to hear from you kind of the most. poignant parts of your story, um, that kind of led you to want to, to share about your experiences.

Sure. And thanks again for having me. Um, I think, I guess it's kind of starts when I was in college. Um, I was at the, Bucknell University, um, swimming there in the program and, um, had a really good first two years. Third year, before the third year, um, I got mono and didn't really realize I had it kind of pushed through it.

Um, Um, and noticed that at the beginning and throughout my junior year, I was having a lot of trouble with my energy. Just like not being able to finish off the week the way I normally would or, um, just kind of, um, you know, not, not spending as much energy doing other things, just kind of waking up, going to class and then going back to my room and just sitting by myself.

Um, and at the end of my third year, I think my junior year, I think it got worse to the I was spending a lot more time in bed, um, and then kind of fell off a cliff when I got another illness, um, and then at that point I think we knew, or I knew at least, that this wasn't normal. Um, reached out to some doctors, uh, with my parents, tried to go to some, um, appointments, didn't get anywhere really, um, and through a family connection learned the term chronic fatigue syndrome and postural tachycardia.

Um, thought it was ridiculous at first. Um, and then went to see this doctor who, um, I was incredibly fortunate to be set up with. Um, and he was able to diagnose me, kind of all of these different puzzle pieces of behavior kind of fit together to this perfect, uh, picture of like, you know, he's completely understanding what I've been going through, um, when everyone else had just been like, you're crazy.

Um, So that was kind of how I got diagnosed, still went through another year of college, um, that was really, really tough. Trying to manage having a chronic illness with, um, being an athlete and, um, academics and trying to be a human, um, on, especially on a college campus where everyone has seemingly endless energy and I was, I just wasn't there.

So, um. Yeah, that's kind of the, the fast version of how it happened for me. Um, I, I know a lot of things went right for me and I'm really lucky to have gotten a diagnosis as fast as I did. Um, Yeah. But yeah.

Yeah. So, I want to kind of go back to the time where you didn't have answers in terms of a diagnosis or a direction.

Um, what were kind of the, the worst symptoms that you experienced or what were I guess the things that stand out to you now is like the most debilitating.

So I think a lot of it for me was social. Um, I think I didn't have enough energy. I think even before I realized physically that I didn't have a lot of energy, I think it came more socially.

I guess before I consciously understood my body was. Yeah. Um, you know, not, not go out and, um, converse with others or go to events or anything. So I literally would just sit in my room, um, pretty much all the time unless I had to be elsewhere. Um, I would go from my couch to my bed, couch to my bed, but the feeling that I'll never forget is, it's almost like walking through molasses or something, like your muscles just feel so heavy and, um, I always felt this way when I'm laying in bed, it's just like your, your body and your muscles are just sinking into your mattress to the point where like if you, if you felt like you had to move positions, it felt like you were lifting the whole mattress in order to do that.

Um, yeah. just really, really heavy. I think, um, again, going back to the emotional stuff, I just became very easily emotional, and I'm really not an emotional person, but things would get me upset. I would overthink things. I would, um, I don't know, just, just really became an internal, um, human, which is really not me.

Um, And then, aside from that, just like the energy, um, I remember the summer after my junior year, I was living at home for a couple years, or a couple months, and, uh, just was having difficulty getting up and down the stairs, um, obviously losing my sight when I stood up, um, just little things like that, but most, the most debilitating thing was the energy and just, you know, I'd spend, 18 hours a day sleeping, um, I'd wake up to eat and then go right back to bed.

Wake up in the morning, um, walk downstairs, get something to drink, and then come back upstairs and feel like I needed a nap. So, um, that and then mixed with the social aspect I think were the most debilitating for me.

Yeah. You say little things like that when you describe some of the symptoms that That you experienced in the past and probably continue to experience periodically now, and, um, I think that for people like us that have kind of struggled with these things, they become, um, I guess, uh, some of the smaller problems we manage.

Yeah. Um, but at the same time, like, we, I, I want to recognize that if a person were completely healthy, were to wake up one day and experience those things, it would be, Um, pretty earth shattering, and so I like to recognize that what you, you know, went through, especially in that, like, really acute period of disability, um, is really, really challenging.

Um, And, you know, it's, it, it's funny because we can, I guess, lessen the blow of our experience, um, by minimizing and I do it myself, um, but what you went through was really hard and I, I do know that you acknowledge that, um, but, but for the people listening that have never experienced that before, it is quite scary, um, and sometimes these things come on insidiously and slowly, it's, you know, one thing at a time and like you mentioned, you know.

Retreating back to your room and not being really excited to engage socially, um, that also has a really, you know, big effect on your overall, um, overall well being, um, and something that, you know, like you said, a lot of people in, um, that age range in college, um, have never experienced before, um, and a lot of people have as well, you know, like mental health challenges can also play Um, lead us to be less excited about doing things.

Um, and I think that's why often these illnesses are attributed to mental health concerns because some of the first symptoms are actually Similar to that of depression and anxiety, you know, with, with postural orthostatic tachycardia syndrome, you know, a high heart rate upon standing is one of the diagnostic criteria, um, and that's also associated with, you know, anxiety and, and being on edge and all of those things.

And in addition to the chronic fatigue leading to, um. you know, feeling like you need to withdraw more for energy purposes and energy, you know, conservation, but, um, looks really similar. And so, um, you know, diagnoses of, of depression and anxiety are incredibly common among the people that are, are in this community.

Um, and it often prevents them from getting a diagnosis early on, which, you know, um, so. Uh, those are always things that, that I think people don't necessarily understand when they're first learning about these issues. Um, but thank you so much for sharing that. Um, Yeah, of course. I would love to hear about some of the ways that, like, your health has evolved over the past couple of years.

Um, you know, the people that you have relied on to continue to You know, keep moving forward with your career goals, um, and things like that, like what What has helped you manage, um, and continue to move

forward? Yeah, absolutely. And I think, um, when I say little things like that, too, it's like, nowadays, um, something seems so minute as well, and it might, honestly, Cause, you know, back then it would cause earth shattering, uh, things to happen.

I think I'm, I'm, through a lot of people I'm learning to manage and make things, you know, make the, the tidal wave a little bit smaller. Yeah. Um, and it's really due to my family and the people, uh, that I've been really able to rely on. Um, I went to law school and met some friends there who are just so understanding and, um, You know, people who kind of looked out for me and, and I think when I was in college, I didn't really have, I had some people that, that really would, but it's hard when you go from knowing someone, um, kind of before this happens and then, and then seeing the digression and then it's like, Well, what's happened there?

Um, instead of kind of coming in and it's like, this is who I am and I need help. And, um, I think, I just, I, I'm so thankful for the people that were willing to help. Um, when I went to law school, I, I made it a goal. Who tried to live as close as I could to the school, so I lived about a block away, and it was in Baltimore City, um, so I was able to go and accommodate myself by going to class, and then if I had an hour break, I would go home and sit on my couch or sit on my bed and eat something really fast and close my eyes for a minute and kind of reset and then come back for class later.

So, um, I think I was able to kind of, um, Accommodate myself that way, but then also having people who, if I could say, look, I'm really not feeling well. I had friends who would be like, okay, I'm going to walk you to your, to your apartment to make sure that you get there okay or, um, I'm going to go get you some, some water or, or this and that.

Yeah. And then in the period where I was being diagnosed, I kind of jumped forward, but the period where I was being diagnosed, it was really, again, it was my family. So, um, at that point, um, I wasn't as close with, you know, I was in, I was in college but I didn't really have people who were. Um, you know, I guess good I had good friends, but not friends that fully understood what was going on.

And so it was really my family who was who was playing that role at that time. Um, my mom would go to all these doctor's appointments with me, and then Unfortunately, I have to deal with me being upset afterwards and when we didn't get the news that we wanted or, um, kind of trying to understand when we did get some news that we wanted.

Um, but yeah, I mean, there were times where my mom would come to the, go to the emergency room with me if I needed, um, to get an infusion or, or something like that. selfless people being able to take time out of their day and really put me first. Um, I don't think anyone gets through something like this alone, but I certainly didn't.

Um, I'm really fortunate to have been able to rely on those people. And not only physically, but emotionally as well, because like I said, I was. I, I really was having a difficult time emotionally, um, at that time, you know, becoming more of a recluse from people that, that I normally was around or people that, you know, were used to me being one way and now saw me another way and were confused by that.

I was confused by that. Yeah. Yeah. But, um. Being able to, for example, just call my mom and be like, this is what happened today, can you believe it? And like, you know, or like, I'm really feeling this kind of way today, or that kind of way today, and having someone be like, okay, you're not crazy, it's okay, let me get through this.

Um, the really good support from other people, that's, I don't know if that

answered your question. Yeah, no, it does. Oh, I did it. It does. Yeah. And also, I think, You know, having someone tell you that you're not crazy is, um, is underrated. And I think that Absolutely. I, until my diagnosis, also slowly continued to question whether I was going crazy.

Um, and so it's, talk about the process of being able, like the, the evolution of going from Like being really unsure about what's going on in your body to like being able to trust that what you're feeling is Abnormal and you need to take care of yourself. Does that make sense?

Yeah, I think so Um, I think it's just it it felt like such a foreign feeling at first Obviously because no one really knows what's going on and I certainly didn't You know, I don't know how to describe the first, um, you know, month or two when I was feeling this way.

It's like, your mind goes crazy and that anything could be on the table. I think there's nothing scarier than thinking this isn't how I'm supposed to feel and something's wrong and I don't know what it is. And then finally getting over that hurdle and getting a diagnosis was really a relief. Um, and I think I thought that once you get a diagnosis, it's like, okay, now everything's got to be fine.

Um, that's certainly not how it was. Yeah. Um, kind of learning to adapt to live with something so debilitating was really challenging. Um, and I think at this point, at this point, um, you know, I was diagnosed in 2016. I think it's become my new normal in that, um, I was just kind of adapted to living. this way and I, I can't really remember living a different way.

Um, I'm so much more conscious of how I feel at all times. If at any time, you know, I feel like I'm, Uh, crossing over a line or something I'm, I'm able to adjust and I think that's just come from a lot of trial and error because I've had a lot of times where I've pushed myself to a point where, um, you know, I, I had that, uh, result where I was back on the couch or, you know, and then relying on people again, like my mom and.

And she's like, okay, you're not crazy. You got this. Keep going. Um, and honestly, it's just having people believe in you. People push you and kind of push those boundaries. So I remember I went to law school and I was honestly like, I, I'm going to try and make it a semester and if I have to drop out after a semester, that's how it is.

Or if I, if I don't make it through the semester, that's how it is. Um, and I think it's just, um, Every day just becoming more and more comfortable with how I feel and, um, and then those big things start to feel like little things because you can control them or you feel like you can control them more, um, or you just adapt to living with them.

Yeah. And, um, yeah, I don't know. It's just, I feel like, um, over time, I feel like every day I learn more about my body and I feel like right now in my life, I know I'm more familiar with my body than I've ever been in my entire life. And I know if I wake up feeling a certain way, how it's going to, how my day is going to go.

And if I wake up feeling a different way, what I need to do to make it better. So, um, and that's really something invaluable that I've learned. I'm very thankful for that. Yeah.

Yeah. And you are an athlete and you were trained for a very long time to kind of ignore those signals. Um, you know, I, I, you can talk about this a little bit, um, but, you know, you, when you're training that hard, there's an expectation that you're not going to feel great, that you're not going to feel yourself.

And so how did that play into kind of pushing back, you know, seeing more doctors and, and, and feel like, I guess, attributing your symptoms to something else maybe.

Right, so it's actually interesting, um, I'll never forget when I was first trying to figure out what was going on. I was going to all of these, like, on campus doctors and on, they do great work, I'm not trying to put any of them down, but, um, they did some blood work and they were like, uh, your iron's a little bit low, so we're just, maybe it's an iron thing and I was like, amazing, you know, perfect, because you can just take a supplement and then everything's fine.

So I was like, okay, you know, give me all the iron pills. I was taking all these iron pills and I remember taking them and then I was like, the next day I was like, wow, this is amazing. I feel great. And then slowly but surely it went downhill and I'll never forget doing blood work a little bit later. And I'd be like, oh my God, your iron is so high.

You need to stop taking these pills. Um, but yeah, I mean, I, I coming from a background in swimming, um, and from a competitive program too, I think there's an expectation that. You know, I've been taught my whole life, just don't think about how you feel, it doesn't matter how you feel. It matters, just, just go out there and do it, like, um, don't think about it and I think after enough time that gets ingrained in you and that, um, you know, I'm proud of myself if I don't feel well and I get up and I still do something hard, um, that that's how I felt and, and because I was praised for doing that.

You know, you get up and you feel like trash and you still go out there and you give your best effort and you have a good result, then that's, that's praised. And so I think that's something I learned and, um, incorporated in other areas of my life too. You know, I'm tired. I don't feel like studying, but it's.

It doesn't matter how I feel, I need to go do it. Um, so I think I, I really incorporated that into my life and it became a part of me. And then, um, again, when I, when I fall off a cliff here and I, and all of a sudden these symptoms are, are really impacting my life. It was kind of like, okay, push it down, push it down.

We're fine. Um, we're still giving our best effort and, and try our best. And it was only until. You know, like I said, I'm sitting in bed and I, I physically can't get out of it that it took me until that point to be like, wait, something might be wrong here. Um, and then once, once you cross that bridge, I mean, it's almost too late.

So, um, yeah. Yeah. And then. And then at that point I was desperate because, you know, it's not that, that, um, you know, I just don't feel well, it's that I'm to the point where I can't function. So, yeah, I think that has taken a lot of, um, unlearning, I guess, to be able to, um, you know, sit. And, and say, you know what, this is how I feel today, and that's okay that that's how I feel, and, um, yeah, like, let, let's set my expectations to how I feel, or like, let's do things to make myself feel better, and if I don't do everything that I want to do, it's okay.

Yeah. Because I just, all I can do is work with what I have. So, that's definitely been a huge learning experience for me, and something that I've really tried to incorporate, um, in a lot of areas of my life. But. But definitely a hurdle I had to get over as someone who is so conditioned to think otherwise.

Yeah. Yeah, it's, uh,

I think one thing that is talked about a lot with, uh, myalgic encephalomyelitis, chronic fatigue syndrome, the really worny diagnosis you and I got, MECFM, um, is the concept of pacing and trying to kind of like figure out what your capacity is and be continuously experimenting with yourself, um, as your capacity maybe goes up or down.

Um, And has been like a really valuable tool for me, um, and I, I think, like you said, you're, you're more in touch with your body than you've ever been. Um, you've been living with this illness now for, what, seven years? Yeah. Um, and. Um, you know, no one else is living your specific experience and there are very few physicians that have your lived experience that are also treating individuals like you with this condition.

Um, and so I think like that's why it's so important for me to try to get the word out about this is because, you know, it's hard to understand unless you're going through it, especially because the science is so behind. Um, in terms of what we know about what causes ME CFS, um, you know, we know some things that maybe predispose people, um, but we don't have a lot of answers.

And so it's really important for, for. Practitioners to be, like, open minded and, um, you know, it, it takes a while for us to find someone who tells us that we're not crazy and that the symptoms we're having make sense based on, um, what they know and so I'm sure that interaction was Um, life changing in a lot of ways, um, as it was for

me.

Yeah, I think there's a lot of misconceptions, and, um, I think especially when someone's going through the process of finding a diagnosis, I found that sometimes physicians would say the exact opposite of what I wanted to hear. Um, in that, you know, I, I went to an endocrinologist and she literally told me that everything's perfect and I was like, okay, but everything is not perfect.

Um, you know, I, I think it's almost in the phrasing that it can be different and, and it's just like you were saying, um, it's immediately, um, doctors will go to anxiety and depression and etc. And yes, that's certainly a piece of it and it definitely was for me. Um, but I think it's not really finding the root problem in that, um, yes, I'm, I'm exhausted, I, um, you know, am depressed, I am, you know, not having a social life, I just sit in my bed all day, but there's more to me than just a label of a person.

Depression, anxiety, whatever. It's like, I want you to actually explore what is going on here and not just tell me, you know, Oh, you're just anxious or depressed and, you know, you'll be fine. Like, no. Um. Any

reasonable, any reasonable person going through that becomes depressed and anxious. Exactly. As a result, not as the cause.

Exactly. Um, so, yeah. Well, thank you for opening up about that. Yeah, of course. I'd love to congratulate you on graduating law school. That's an amazing accomplishment and, um, especially given All of the hurdles that you face along the way. It's, it's something I hope you're really proud of. Thank you so much.

Yeah, and I'd love for you to share kind of what, um, your life looks like now. I know you have some exciting personal news. Yeah. Um, and a new job. So let's hear all about it. Yeah,

so I recently got engaged, which is really exciting. Um, Congratulations. Thank you. Yeah, so I live in Maryland here. This is where I've grown up and lived my whole life, um, apart from college.

But after law school, I went and did a clerkship with a judge, which was really a neat experience. Um, that was kind of a Uh, more

of a

eight to six job and then kind of left it at work a little bit more. Um, kind of had my weekends free and I think that was a good stepping stone for me. Again, I was very close to home, felt really comfortable and was able to make a really good connection with my judge to the point where I was able to be like, look, this is what I'm dealing with and you know, I'll let you know if I need a minute.

She was very open and I just felt really comfortable in that position. So it was nice to kind of like. Take that stepping stone of having a really a job where I can have a really close Personal relationship with who I'm working with. Yeah. Um, I think that was really helpful to me and then Now I'm an assistant state's attorney in Montgomery County in Maryland, which I'm a prosecutor essentially And it's a really fun time to be a prosecutor.

I think it's It's really interesting, just on a lot of levels, but, um, I'm having a lot of fun, and I'm loving it, and I think it's been an interesting, um, stepping, still, I mean, an interesting step up for me, in that, um, I'm working a lot more, it's a lot on my plate, I love it. So much, but, um, it's definitely more than I'm used to, um, even from law school, you know, in law school, you can take, take your own little breaks between classes and, and whatever.

It's not exactly from eight to whatever, just absolutely working nonstop. So, um, it's been an interesting experience trying to figure it out. I found that I'm really more capable than I thought I was. Um, and I think that's exciting from just from like a. kind of like what I thought I was able to handle. I think, I think I'm able to handle more if I, um, set my mind to it, but also, um, come in with an understanding of the things that I need to do to make it work.

So, you know, I'm not just diving in, um, without a plan. I think it's really going in and understanding, um, I need to be drinking this much water. I need to be, you know, take a break sometimes, close my door and just like relax. Um, and I've also found that the people around me are really amazing. I just have, honestly, I have fun and that makes it better.

But, um, it's been an added challenge because I'm working a lot more than I have in the past. Um, But yeah, I'm really loving it, and I think it's just a matter of, um, learning. I'm still in the process of learning how my body works best with this new job. I mean, there are times where I have to stand up in court, um, for hours on end and be presentable without a minute to take a breath or anything like that, and that's been a learning experience.

But again, I think it's just built my confidence in knowing that I am capable of something like this because if you asked me a couple years ago I would say absolutely no way. There's just no way. So um, I'm proud of the strides that I've made and and I think that goes also towards Um, being willing to push the envelope a little bit and, and kind of see where you can go.

Um, I know it's different from everyone, but, um, I think my family especially, I've always been encouraged to try to get up and, and actually try something and if it didn't work out, it didn't work out. And I'm just thankful that so far this is working.

Yeah. Yeah. To, to have those people around you that want to support you and.

Um, and we'll be there to, you know, high five you and hug you even if it doesn't go exactly the way you hope. Um, is invaluable and I'm really glad that you have that. Yeah,

I think it's everything for me. It's why I'm here. Um, Honestly, I wasn't gonna go to law school when I did because I didn't think I could do it and just having people be like, Okay, let's try and take some baby steps and see how we can accommodate this so that you can try.

Um, and I tried, and it worked out, and I know it won't work out for everyone. I'm just thankful it, it did, and I would just, yeah, I was in a place where I had people who were willing to catch me if I fell, and I'm really grateful for that. Yeah.

Um, on the note of being required in your job to stand for a long period of time, um, and other things naturally that, that come along with.

Um, being in the legal industry, um, have you felt comfortable asking for help? Um, what kind of like disclosures maybe have you felt comfortable making? Yeah. Um, I think this is a really big conversation right now with trying to increase accessibility in spaces because individuals living with disability and chronic illness, um, should be represented in all spaces.

Um, to be able to provide their, like, really unique perspective. Um, so I'd love to hear about how you have navigated that in your, your new work life.

Right. Honestly, I think, I find that especially tricky because, um, I get scared of telling someone and, and feeling like they're going to judge me. In my head, it can go one way or another, and that they feel, um, I feel a lot of compassion and things, or judgment.

And, um, Especially in, like you said, in a job where I'm up on my feet a lot and it requires a lot of, um, you know, being presented, presenting and, and like actually being in front of a room and, and having myself somewhat together. I think it's, um, a tricky subject to breach and even just being like, you know, I had, by the way, this is difficult for me.

Yeah. Um, I'm fortunate that I have a lot of people in my office that I, I connect with and I can speak with easily if I, if I'm having a problem. Um, I also have a bit of an ability to go home and work from home if I need to. Um, Or just say, you know, I'm really not feeling well today. I need to kind of skip out on this.

So, um, fortunately, I haven't been in the spot where I've had to have some of those tough conversations. Um, I think it's always really, really tricky, um, knowing when it's appropriate to say something because you don't want to sell yourself short. Um, you know, I don't want to come in and tell someone that I'm not capable of something, um, because I want to be capable of something or I to think that I'm capable of something and Um, yeah, I, I personally haven't had a lot of experience with that.

I did last year, um, and I was overwhelmed by the support I got. Um, but, and I'm lucky to have not had any experiences where someone's been kind of turned the cold shoulder or anything like that. for me that way. Um, but definitely haven't had a ton of experiences like that before. Um, but I feel comfortable going to someone if I need to.

Yeah. Yeah. And I'm,

I'm hoping with time that, um, there's going to be a little bit more of an expansion with, uh, people being willing to, um, take that information from either their employees or their students. Um, and not let it change their opinion before they get to know the person and see kind of what they're capable of.

Um, so, I, I'm hopeful that we're moving in the right direction, but, um, it is kind of ironic how it's like that's the space that they know, they should know all of the laws, um, on what they're required to provide for their employees, but, Um, but in every industry, I think that it gets tricky because like you said, you don't want to sell yourself short, you know, you're capable of so much.

And so it's a balance of like. How much do I warn people just so they're not concerned if I, you know, a lot of people, like, pass out because of their POTS. Um, and if they weren't gonna tell someone, maybe in their office, that that's something that they experienced. Um, and it's, you know, they're normal, even though it's not normal.

Um, it might lead to a lot of, uh, stress and frantic, uh, colleagues. Um, so it's a balance between that and, and making sure that, um, you know, you're doing what's right for yourself. Um, and making sure that, you know, people are prepared if something were to happen.

Yeah. I think also, um, I, like I said, I, I'm someone who when I have a flare up or if I'm, I'm having issues, it'll affect my mood, for sure.

Yeah. And, and sometimes I like to give people a disclaimer, like, this is not me. Like, I'm going through something right now and, um, this is not any reflection of how I feel about you and, and, Sometimes I feel the need to apologize or say something like that because, um, sometimes I can get a little snippy if I'm, if I'm dealing with something like that because it's uncomfortable.

And, um, it comes out that way in me. And, um, so I think that's the, the situation which I tell people most. It's like, I apologize. I'm having a moment. Um, this isn't me. I can't control it. Just give me a minute. So, yeah, I think, I think that's. a situation where I don't want people to think that I'm personally upset with them or anything like that.

Yeah, I, you and I are pretty well, um, integrated into the online, um, community of individuals living with disability and chronic illness. And I, I actually think that that's something that isn't discussed very often. Um, kind of the, the mood and temper changes that come along with Um, with managing these illnesses, it's, it's actually one of the symptoms, and my mom used to joke that just because it's a symptom, it's not an excuse.

Yeah. Um, because I, I would, we called it my, uh, my tachycardia temper tantrums. Yeah. Um, and, and I have definitely had to work on that, but it's a really, like, It's a really interesting experience going from a person that seems very even keeled to like, not able to tolerate just like very, um, very minute like conflict or like trouble or stress.

And it's often taken out on the people that we love and care about the most because Those are the ones that stick around through the hard stuff. Yeah. But, um, bizarre. It's a bizarre experience to, to have that happen and then be like, Oh my goodness. I just freaked out on someone for no reason. No fault of their own.

No. And so many times I would. You know, I would say something to my mom and then I'd be like, oh my god, I'm so sorry, but I just can't help it right now. Like, you just need to take this from me and I'm really sorry. Yeah. Um, unfortunately, it's the people closest to you that kind of deal with it sometimes, but um, absolutely.

That's something that I They'll struggle with when that's probably the first thing that comes comes up for me is the mood and Yeah, unfortunately for other people

like you're like you're in wonderful new fiance. I'm sure yeah He seems like a saint from the things that I've heard about not that you you know Require him to be a saint at all.

I just Um, I'm very excited for you both, and I'm glad that you have something very exciting to look forward to and plan. More things to add to the list of to dos. Yes,

definitely a long list, but yeah, thank you. So,

I have a couple last questions I want to wrap up with. Um, so I love hearing the advice that our community provides.

I think everyone, even though we have some shared experiences, we have Some very different perspectives, um, and oftentimes these topics are not always just fun, light, and inspiring, right? Like, it can get very real, um, and very introspective, um, and honestly pretty heavy because These conditions are life changing and debilitating.

Um, and so the advice spans from from everything or from, I guess, something really happy to something a little bit more heavy, but Um, if you could write a letter to your past self, what would you say?

You know, it's funny, um, because I've really reflected on this a lot, but I think it's exactly what the, uh, the post was that I wrote, which is You're Not Alone.

I think 110 percent because, um, there were so many times where I was, I, I picture my dorm room back in college where I'm just sitting there and. It's just the worst feeling in the world, and you feel like no one can connect with you because no one that you know can. I, you know, I didn't know someone who had, um, had chronic fatigue, or I didn't actually speak to someone until I met you, Ella.

And so, I think, um, I felt like, so different from everyone else, and I felt like people were talking about me, and I felt like people were, um, frustrated with me and annoyed with me, and confused by how I'm acting, and, and, Everything else, and, um, really writing that piece, I was thinking about people who are, are now in that same spot that I was in, you know, seven, eight years ago, um, and, and thinking back to those people, you know, I would just want to give them a hug and say, um, you know, you're not going through this alone, I know it feels like you're alone and you're stranded on this island and all those people, you know, You know, people don't understand, and, because they don't, but, um, there are people out there that do, and, um, I'll always say, I know I don't have the worst, um, symptoms, a lot of people have worse symptoms than I ever had, but I know that feeling of feeling alone, and, Um, like there's no hope and, and everything like that.

And I think that's so amazing that you're doing something like Dysunderstood and, and opening this community, because I think that if I had the opportunity to speak to someone when I was in that situation, or at least read, okay, this person's going through the same thing that I'm going through, and You know, um, kind of build that connection even if it's just me reading something but not even speaking to someone just knowing that that other people out there are experiencing the same thing and it's hard and they're getting through it, etc.

I think just like having that, um, would change my perspective completely and so I think if I could tell anything to my myself when I was back in that dorm room would be like, this sucks, but, but there's other people out there who understand. And, um, they might not ever, like, understand every single symptom that you have.

Maybe they have some different symptoms or some things affect them differently, but there's other people who are going through this. I think, um, I think that would be my, my biggest piece of advice and to look for those people and, and find them because, um, it's such, I, I find it to be such a lonely. Uh, ME CFS, at least, such a lonely, lonely, uh, syndrome.

And it was for me, and um, I think if we can break that, um, I think it can help a lot of people have hope, um, and, and, you know, maybe, you know, I was saying how, how much it affected me, uh, mentally, emotionally, maybe combat some of that, because a lot of mine was from feeling so alone. Um. Yeah. So that would be my biggest piece of advice.

I, I don't know if it's advice or encouragement, what it is, but, but you're not alone. You're really not. Um, thank you so much, Ella, for doing this and giving a platform to this important topic so that other people were in that spot don't have to feel alone. Yeah. Um, yeah. Of, well, thank

you. And I, I feel the same way.

Of course. I think the, um. It's a common thread among people that I've talked to, I guess the two most common responses that we got when we asked the community, you know, what one word describes your experience with disability and chronic illness, and the two of them were lonely and misunderstood. Um, and so that's the whole purpose of creating this community is to, to bridge the gap between, you know, the people that are able to kind of enrich each other's lives in a, in a very unique way.

Um, in a way that you would only seek out if you were in a situation like that. And I created this, um, because I also wish that I would have had that community and, and every single person that I have had the pleasure of. Adding to our author list is like their motivation is to do this so that there are less people that have to go through what they went through.

Um, and I think that's a pretty powerful, uh, reflection of humanity at its core. Um, I know that there's a lot of sadness and Destruction and, and evil in the world, but there's also a lot of hope, strength, resilience, um, and amazing, amazing people that we get to meet throughout our life, and I really try to highlight that, um, and to finish our conversation, um, I'd love for you to take a moment to think about what Dysunderstood means to you.

I like that. Um,

Dysunderstood means to me that, um, it sounds, I'm not alone. I guess. Yeah. It means that, it means that there are people out there who, do you mean Dysunderstood as in Dysunderstood? Or Dysunderstood as in

Dysunderstood? It could be, it could be, it could be the word or, or the community. I think, honestly, they're kind of representative of both.

Right. Right. Right. What does What does this platform, what does this movement,

I guess, mean to you? Oh, okay. The platform means, again, that I'm, I'm, I'm, what I experienced is real, and what I do experience is real, and that other people deal with that, and, um, that I don't have to be alone with it. That I don't have to, um, question myself and, um, feel like I'm different, um.

And that people don't understand because there are people who do. That's what it means to me. And it's just so much hope and, um, excitement for, for the fact that, um, this is not something that I need to go through alone ever again in my life. Yeah.

Well, I love that and, um, thank you so much for everything that you shared with us today.

Um, I feel like we've, we've talked multiple times, but, um, I think every time I get to hear your story and other stories, it's, um, it's a great reminder of why we continue to do this. Um, and also just the amazing people that make up this community. Um, I think it's a testament to, um, the fact that this is not, um, a psychological condition.

That people continue to press forward, um, and push the boundaries physically, like you said. And, and really try to, um, Um, you know, succeed in whatever, like, path that they decide to take, what's, you know, in their, like, scope of possibilities based on, you know, the state of their health and things like that.

Um, so, yeah, I'm, I'm really grateful that you spent the time to chat with us and I'm, I'm sure that, um, everyone listening will have something to, to take away even if, you know, this isn't something that they're managing themselves. And hopefully Um, if they're a medical student, they're going to take this message as they move through their career as a provider, if they're a current provider, I hope that, um, this allows them to reflect on maybe how they communicate with their patients, um, maybe consider different diagnoses that, Um, they may overlook, um, and if this is a person listening that is also managing some health challenges of their own, I, I hope that they hear that, um, they aren't alone.

Um, and the wonderful thing about Dysunderstood is that, um, you can reach the people in the community if, if you'd like to reach out. Um, Instagram has been a wonderful way for people to meet each other and stay in touch. Um, and so you can find. Um, Dysunderstood at Dysunderstood on Instagram. Um, and also at the website, www.Dysunderstood. com, um, and if you want to find the blog specifically, it'll be backslash blog. Um, so thank you again, Diana, for your time. Of course. Um, and I am excited to See the wedding photos, hear about how the job continues to go, and, and just see how, um, where this wonderful life journey takes you. So.

Thank you so much. Thank you. Of course. Are you interested in sharing your Dysunderstood story? Head to Dysunderstood. com slash contact us. You can find all things Dysunderstood at our website and at Dysunderstood on Instagram and TikTok, and you can find me at Ella Eastin on Instagram. Have a good week.