The Dysunderstood Podcast

 Episode 6: Daniela’s Story

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

Welcome back to the Dysunderstood Podcast. I'm really excited about today's episode. Our guest is Daniela Kerr. After going undiagnosed for three years with multiple chronic illnesses, Daniela was able to begin her true healing journey in 2020 at the age of 17. She has since learned that healing is much more than meets the eye, and that the mind, body, and spirit connection is vital in any type of healing.

Daniella is doing better than she has in years and is now sharing her experiences and lessons learned from her healing journey on her own podcast and blog, For the Healing Soul.  I actually grew up down the street from Daniella and although I would have never wished that any of these things would have come into our lives, it has been very special to reconnect and be able to support each other through these really, really challenging times.

Daniella has learned so much. so much as a result of her experiences and she's open to sharing her wisdom, which I and so many others will benefit from. I hope you enjoy.  Okay.  There we go. Um, well, thank you, Daniella, for joining us. Um, would you mind sharing with everyone what you have been up to and how things have been going since you shared your story with Dysunderstood?

Yeah. So overall. I'd say it's been an upward trend. I've been doing a lot better in a lot of ways and doing a lot more things that I want to do.  So that's been really awesome for me, yeah, and, um, just lots of going into school, doing projects that I'm interested in and, you know, doing things that make me happy.

Yeah.  Well, I'm very happy to hear that. Um, in terms of your health, um, you said it's been a positive trajectory. Um, are there things that you are no longer managing at all? Um, are there things that have kind of improved but are still there? Walk me through, um, kind of that side of your life. So,  I'd say the biggest, um,  I'd say the biggest  progress that I've made has, has been in my physical stamina and strength, um, since I've started physical therapy.

Awesome. It took a lot of time for me to get to the point of doing physical therapy. I was actually bedridden for three years, so it made it  really hard to do things physically, and now I'm able to,  you know, like stand up for longer, walk around for longer, um, and then that allows me to do so many more things, and so that's the biggest thing I've made progress in.

And then  my chronic pain has pretty, been pretty stable. It hasn't really changed that much, but like I said, I'm able to do more with it, like I'm able to cope with it better.  Um, so managing it has gotten easier. And  I have not been feeling, you know, this is the first time of me noticing this, but I haven't been feeling that faint when I stand up recently.

So it hasn't been happening too frequently. So that's what I like to do. Yeah. That's a win. Yeah.  Um, and I'm, I'm curious, are you experiencing, now that you're able to move around a bit more, do you think that your pain has improved or worsened at all, like around the time that you do more activity?  Yeah. Um.

If I overdo it, if I feel like I'm pushing too far, if I really want to do something and it makes it so I'm going much longer than I expected, um, it does sometimes get worse later in the day, um, the pain and stuff, but  not really. Like, when I go to physical therapy, I call it, uh, an exercise because it's just a full out workout.

Like, it's not physical therapy. I'm working out my whole body every Yeah. Every part. So, it doesn't feel worse or better, like specifically, afterwards or during, um, so that's a good thing, I think. Yeah. Well, I'm so glad to hear that and, um, you know, people that have had an opportunity to. Listen to your story.

I'm sure like that's, you know,  a sign of hope for them and also encouragement to continue to push forward and, and you have been through a lot over, you know, several years now. And so, um, seeing you like this also makes me very happy. Um, So,  tell me a little bit about school. What does that look like? And, um, do you have to do anything in person?

Um, what are your requirements right now?  So, since I was a veteran for three years, during that time, I didn't go to school. So, I'm 20 and I'm finishing high school right now. So, just a shout out to your own path in life. You don't have to go a specific way. Um, and right now school for me, I reintegrated last November.

Uh, and I was really nervous because I had a lot of bad experiences with school when I was sick.  And it ended up being okay. I took one class and then I ended up taking, and then my school ended up telling me that I have, in order to graduate by their required timeline, I have to take six classes.  And that became really stressful really fast.

And  I couldn't cope with it. It made everything worse physically for me too. It just was so stressful that it put a lot of pressure on my body, put a lot of pressure on my mind.  And so we ended up figuring out a different path I can take where I'm gonna go to their fully online school for my, the school that I go to.

They have an online version.  And that allows me to graduate a year later so I can take um,  three classes right now.  And that has been going pretty well. It's stressful. I mean, school's always stressful, but,  but, I,  I have a really good relationship with my teachers. Um,  we've worked out a good plan to make it so I can let them know if I'm not feeling well that day.

We can have a shorter class session. We could, I'm, I'm fortunate enough to Yeah, at a one on one school, so I'm working one on one with my teachers, and it's, it's been great, especially because I'm 20 a high school, but that's just a personal decision, um, but, so I've been working with my teachers. I can have shorter classes.

I can miss classes and not have to make up work that I missed, and it's been pretty good. Good.  I think that hearing you speak so openly about this too is really important because I think there are So many people that, you know, are managing multiple chronic illnesses that have had to put their life on hold and, um,  you know, probably feel like they're behind and they're, You know, not able to keep up with everything that everyone else is doing on, you know, the path that society has Created for us and basically told us that we have to follow if we want to be like a positive contributor Um, so thank you for opening up about that.

Um, how how has How has navigating that been emotionally?  So in the beginning years of being sick, it was so challenging, especially when all my friends graduated high school, when I saw my sister continuing her education,  and it was devastating. It was, it was frankly a grieving process, um,  because you can grieve more than people.

You can grieve life experiences that you missed and,  uh, expectations that you had that didn't end up coming true. And so that was a big deal for me for a long time. I would, I would even have dreams about it. I, like, had dreams about it. Not graduating and all my friends leaving me and whatever.  So, so it was hard and then,  and then I realized that it is kind of a conveyor belt of life that people put you on and that's what the, that's how I call it, I don't know.

And everyone's expected to kind of go the same path. And I'm like, I don't need to do that. And it's kind of cool that I'm not doing that. It's kind of cool that I'm able to  take my time and do it my way that feels best for me. So, now it's something that I'm really okay with, and  I'm just taking my time, and that's okay.

Yeah. Yeah. Well, I am, like, very impressed. Um, I think that it's really hard to kind of come to peace with that, and I'm sure that you've done a lot of thinking and a lot of work to get there, um, and I'm also sure that it's not just like an upward straight line, you know, trajectory. I'm sure there are times when, when things are still a little bit Um, so can you  talk me through  kind of  building off of the conversation of like how you've been managing that portion of your life emotionally, um, talk about how you've been able to manage just living with a chronic illness, um, multiple chronic illnesses and, um, you know, how over time that has evolved for you.

Yeah. So,  like I said, the beginning was a very challenging time. Especially because I was so young, especially because  we didn't know what was going on at first and this is something that isn't well understood right now. Um, so  it was so challenging. I felt  completely alone in it. My parents tried their best to help me, um, but they had no idea what was going on.

It was really strange behaviors and symptoms and things that didn't make sense. So that was challenging and then to make matters worse, like The whole doctors and therapists not being helpful and being that opposite of helpful and, uh, having that just make it even more confusing and kind of make me even more feel like an outcast almost in, like, in society and in my friends and everything.

Especially the friend part, like, I had a really good foundation before I was sick. I had a lot of friends. I had a lot of good social activities, and  it couldn't last when I, when I first got sick. It just didn't last, and  I lost many friends, and I,  and I just had a really rough go of it for a while, and then when I couldn't find  answers to what was wrong with me physically and mentally and everything, um, um, I'm not wrong, let's rephrase that.

When I couldn't find answers to what was ailing me at the time, um, I love that change.  Yeah. Um,  I, that's when I became bedridden because I just kept getting more sick. And then,  and life was just completely frozen in time, like paused. I, I didn't leave my room for at least a year at one point. Um,  it was just a nightmare.

I didn't know what anyone expects from their life. And  No friends, no contact with other people, except really my family and some therapists and doctors along the way who didn't help, like I said, and then,  and then I found, and then through the help of my parents, because they,  yay for them, never gave up looking, um,  I found my current medical team and the doctor who's in charge of my care, and  when I started working with them, my whole team there, I  It started to change rapidly, my lifestyle.

I was not fighting with my parents anymore, because despite the fact that they wanted to help me, they couldn't, and they didn't understand, so we fought a lot.  I stopped fighting with my parents. I started to do more things that I couldn't do, but not because I was forced to do them, because I wanted to and because I felt like able to.

And,  and slowly, I've been working with my current medical team for about three years at this point, and slowly, I just started.  Doing more and more, and going outside of my room,  talking to friends, meeting with a friend,  and going back to school, and doing art, and singing, and dancing even, which is so hard now, but  it's things that I loved to do before, but I'm doing them differently now, and that's okay, I'm doing them  as an adult, I was not an adult when I started this process, and I'm doing this as a person who has chronic illness, so,  so, so yeah.

Well, it seems like in addition to school, you're taking the time to also, like, fill your life with things that bring you joy, um, and you are also incredibly creative. Um, so tell us a little bit about  the things that you've created since you got sick and then, you know, had a little bit more energy to be able to Thank you.

You're welcome. to create something new. Yeah. So  it started, I think, with embroidery, which is like a little old lady thing, but I love it. And  it started really basic. I'd never done embroidery before. I did that and I got pretty good at it really quickly, which was super fun. And then  Lots of drawing and things I can do from bed, you know?

And then at one point I was like, I just want to write. I don't know why, I just want to write. I was never a writer in the past. I  basically was afraid of writing growing up. Like, I didn't like reading or writing. That was like my least favorite thing in school.  And now I love to write. And I think I write pretty well, if I do say so myself.

I love to write poetry more than anything. And it's helped me, not just as a creative outlet, but  As like an emotional and  pain physical outlet, it,  it allows me to think more creatively in my words and do more  explaining in a way that you can't just do in a conversation.  So, I love writing and I  love to sing.

I love to dance, like I said, um, and I  love to do my makeup. I have a little makeup today, if you can watch the video, but, but yeah. Yeah. No, you always look so beautiful. Um, what is your blog called that people can go and read? Oh, yes. I have a blog called forthehealingsoul. com, and yeah, I started that about a year ago, um, with the encouraging of my creative writing teacher, of all people.

And I've been writing some things on there. It's not super consistent, but it is something I always come back to and I, and I love adding to. Yeah. Well, I've thoroughly enjoyed, um, reading it and I feel like I learn something new every time. Um, so I encourage people to check it out. Um, and these  outlets that you have discovered for yourself, um, are they energy consuming where you have to  dedicate, you know, some of your spoons to them or is this something that is more restorative for you or maybe a combination of both?

I definitely say it's a combination of both. Um,  with,  with the things, when I enter like a flow state, if anybody knows what that is, kind of, you know, when you get into doing something you love and you feel like time just doesn't exist and you're just writing or you're just doing whatever it is. When I get into that state, I don't think it's very draining, um, but if I am doing something like dancing, of course, that is tiring.

But like the, like the nonprofit I kind of work with sometimes called CHIP, uh, Creative Healing for Youth in Pain, they kind of talk about how creativity is healing and,  and I've definitely found that to be true. So it's definitely restorative in many ways. Yeah.  I think that when we are diagnosed, if we're lucky enough to be diagnosed.

Um, there's an aspect of medical care that is ignored, um, including, you know, healing your mind and your body in different ways. Um, has there been anything else outside of what Western medicine would  or has encouraged you to do that you feel like has been? particularly helpful in your healing process?

Yeah, for sure. Um, the mind body connection is overlooked in, in so many ways.  But even more so, I think the mind body spirit connection is something that is super overlooked. Usually in, at least in the Western world here, you go to a physical doctor first. Maybe then you go to a mental health type of doctor and then you, maybe if it comes down to it, you go to see Eastern Medicine spiritual work.

If you're not already, if you're not already knowledgeable about those sort of things. Um, and  that's how it kind of went for me.  Therapist first, then the doctors. And, um,  and I have found that spirituality, for me at least, is  a huge part of my healing. I found it to be the most effective and efficient ways I've healed.

And I found it to be,  like, some of the, for example, some of the things that you can talk about in a mental health sentence, like acceptance or surrender or whatever. being present. It, it makes sense, but you don't really have  all the like oomph behind it that the spirituality gives it. Um, it can be discussed through a spiritual lens.

And when you do that, I think it really makes it  more potent and more actionable for you, or for me at least, and that's why I think it's a really important part.  I'd love to hear how you kind of discovered that or stepped into that as part of your healing process. Yeah, so,  I had done some acupuncture in the past.

Um, just because that's a more widely accepted form of Eastern medicine here,  and I found it to be effective, but I was in the pits of it at the time, so it didn't help me in the ways that it maybe it could now.  And so I was already aware that Eastern medicine existed, but then I,  it actually started like this.

It's a very interesting story.  Out of nowhere, I was like, I need to go outside more. I really need to go outside more. I just have to. I hadn't gone outside very often for years at that point.  And so I started going out into my backyard, and I was hanging out there, and I was like, I need to research, like,  spirituality.

It just, like, hit me. I don't know, like, I have no other reason.  I was like, I need to research spirituality. I did some research and started reading some books, um, at Cartool and others that are really inspirational for me.  And it just flipped a switch, and I was like, oh no, I'm missing something huge. Like, this is, this is something that needs to be learned about and understood.

And the more I learned,  the better I felt. Like, I swear, as soon as I started reading these books and stuff and researching, Going outside.  I felt happier. I felt less bothered by my symptoms. I felt just like,  it made sense. It felt more at peace. It gave,  it gave me a reason, like, for my suffering,  and,  and just basically made it, made  me understand why I've gone through what I've gone through in a lot of ways.

Yeah, I'm sure that Um, that perspective is super helpful in being able to navigate, you know, the constant, um, challenges that your body presents you, um, in addition to all of the  Affects that these illnesses have on our, like, social life and our emotional health and all these things. Um, so I, I love that that's something that you, you know, dove into and, and gave a chance.

And I'm really glad that it's been so helpful for you, I think.  You know, I  believe that there would be people out there that, you know, may think that these conditions are psychological in nature. And they'll say, Oh, you're doing better after you addressed your mental health, or you addressed, you know, this thing?

Like, no wonder, it must be psychological. But I think it's like,  no, that's just part of the picture, where, you know, if something is, you know, manifesting physically. That,  you know, you have to get that addressed in addition to addressing, you know, what's going on up here and in here. Yeah. Um, because as you are very familiar with, um, you know, there are things that you've had to heal from as a result of trying to find answers.

Yeah. So, um, if you, if you, excuse me, if you wouldn't mind sharing  a little bit about, Kind of some of the experiences that you had at the very beginning of trying to find answers that have Um, been, you know, challenging on your spirit and your heart. Um, I think that would be wonderful for people to hear.

Of course.  But one thing I want to say before I get into that is, even if it was 100 percent psychological, why should that be less valid?  That's a big, big issue because, trust me, I, I felt that at first too, I'm not just like coming out here saying, oh, it was always okay, no.  It, but, but I think  there is no separation between the mind and body.

There's no separation. You, when you're crying, for example, you're sad, you sit in a specific way, you hold your body in a specific way because it's all connected.  It's that's just an example I really love because it's a little different than I think people are used to hearing maybe so, but for me in the beginning of this, of this process.

I,  I was, it was, okay, so first of all,  it was all triggered, my chronic illness was triggered because of the extreme stress I had, um, from a move across the country  with my family. And, It's not the only reason why it happened. I was, as my therapist said, hanging by a thread before we moved, but the moves and the stress from it just triggered it all.

So,  that was already something that made people say, oh wow, like you can't handle a move from a stress, like a stress from a move. You're not,  you're not like okay. You're, you're crying, you're depressed, you're whatever it is.  That's why you're having these symptoms. Because the first symptoms I had were a high heart rate and temperature imbalance and The presyncope and syncope that I was experiencing.

So,  so basically,  I was told by many therapists that we approached, because like I said, we approached therapists first,  that, oh yeah, you're just having extreme anxiety. You're just having extreme anxiety, or you're really depressed, and you're not trying to do things.  And I was like, no, I really want to do things.

I really want to be in school with my friends. I really want to be  going out and doing this and that or whatever, but they thought I had no interest. They thought I had no, that I had no desire to do those things. And they thought I was just really anxious.  And from the start, I knew that wasn't just it.

And I did think I was anxious. I did think I was depressed, but I knew that wasn't the only thing going on.  But because I was being told that was the only thing going on, I couldn't even admit that those were things I was feeling, I was feeling, you know what I mean, like,  so, so I was like, I don't have anxiety, I have zero anxiety, like that's not happening because I didn't want them to continue this narrative about me.

That didn't work. I kept getting worse. We didn't look anywhere other than the mental health therapist field, um, and  they just kept saying, you need more intensive extreme support for your condition because you're getting worse and by worse, I mean,  I was inconsolable at all times. Like,  I was in pain. I was feeling so many symptoms that I can't even possibly begin to count.

And  I had just gone through a lot of trauma because  I'm neurodivergent. And that means I have a form of autism and, for me at least, and  the move was so  triggering because I can't handle that level of stress at all times. Like I can't handle that level of change and stress for someone who's already a virgin.

So  I was inconsolable after a lot of trauma  and pain and  not being understood by anybody around me.  So, it was damaging. It was very, very damaging. Already, I was already traumatized from the move and then  the effects of all those bad experiences with different types of therapists and  I saw a lot of therapists.

So, it was, it was many years. It was two years of seeing therapists  and I got no assistance. And then we decided we would move to  seeing some physical doctors when, when things got more physical.  So, Have you  continued to see mental health care professionals since  you realized that the care you were getting from them wasn't what you needed?

Yeah. So it was very  sensitive. It was a very sensitive topic at first. When we met my medical team that I have now, they wanted to set me up with one immediately, a, a mental health professional.  And I was like,  I was like, I don't think so. So they ended up holding off for a while, doing some other inventions like behaviorists and medications and things like that.

And eventually I said, okay, I think I know I should see a therapist, but it has to be a good one. It has to be a good one. It has to be someone who really understands where I'm coming from and won't treat me like the old ones did.  And so I tried one therapist, didn't go so well. And then they found another one for me and we've been working together ever since.

It's been about two years of working together.  And she's wonderful, and she understands that I have sensitivities when it comes to working with a therapist.  So if I get upset about something she says, we'll work it out together.  And the work I've done, my trauma work I've done with her has been  really great.

I'm so glad to hear that. Yeah. Um, talk about how your relationship with your family has also evolved through this process. Because You have so vulnerably shared, um, some of the challenges that you faced in your personal relationships as a result of all of this and, um, as you said, they've been steadfast in trying to find answers and give support, but I know that also hasn't been easy and I think that's often a shared experience with people that are living with invisible chronic illnesses and especially ones that are undiagnosed.

Um, because you don't even, if you don't know what's going on and you're having all these physical manifestations, like you're also experiencing a lot of  Emotion and, you know, if you're spending all this time around the same people, things can get really tense. Um, so if you wouldn't mind sharing a little bit about that, I think that would be great for our listeners.

So it, my relationship with my parents before I became sick was really great. We're pretty close knit family. I have a sister as well. Older sister by two years. And,  and we had a good relationship. Like, it was pretty good. Like, much better than I think some of my friends relationships might have been with their families.

Like, it was just tight knit. So, then I became sick, and  I became, like, the problem of the family. I became, like, you know, the issue. And,  and my sister and I really disconnected in the first few years of being sick. Um. She didn't really want to ask about what was going on. She didn't want to talk to me or come into my room when I was upset, which was pretty much all the time.

And she had her own thing going on. So, not her own thing, I mean school and stuff. That's her own thing. Um, she had her own thing going on that way. So she and I were not connected in the first few years. And then  my parents, like I said, were working really hard to try to help me. And.  And I always said that I didn't know what was going on, but I knew wasn't going on.

Well, wasn't going on, I should say. Um, I could tell you all the things that it wasn't.  But my parents couldn't trust that because,  because I was a 14 year old and because all their medical professionals were telling them something else.  So they didn't know what to do. I'm their child. They want to do what's best for me.

And they think, okay, I'm going to listen to these doctors and  do what it takes to help you feel better.  But in some cases, that included boxing me out when I was in distress, not coming to me. That included taking away things as a punishment for my behaviors that weren't in my control.  Um, and so, it was a very, very hard time for, for those first three years.

And they, you know, they tried to give her medications that doctors wanted me to take that I didn't want to take. Because they weren't helpful. And they were actually the opposite sometimes. So,  so it was rough. It was very, very rough. We would fight all the time, and it was just  not what I would have, I said things, and they said things that we probably would have never imagined we'd say to each other beforehand,  and then I met my behaviorist, um,  who isn't really a behaviorist with me, but she's more of a behaviorist with my parents.

She,  she works with them a lot, especially in the beginning, and  kind of letting them know, like, this isn't my fault.  This isn't  something I'm choosing at all, and that  they need to be there for me as a support, and not as somebody who is trying to fix it.  So, it immediately, our relationship immediately shifted,  and once I was in a more stable state, less of the outbursts and crying and things that were, out of control at the time.

Um, outbursts physically too, like physical episodes of sorts.  Once we got, once I got more stable, my sister and I started to rebuild our relationship. And that has been,  I would say, one of my  favorite things over the past few years. Um,  I know I've put in a ton of work to try to help her understand what's happened and help her understand  that I understand.

what it might have been like for her.  I can't fully understand, but, you know, being the sick kid and having the other kid who doesn't get as much attention when you're in a teenager age, you know,  that makes it very hard for the other kid or the other kids or whoever is in your family. But,  so I've been trying to be there for her, let her know I understand her, let her try to understand me, and spending lots of time with each other.

And now we're closer than we've ever been. So, I'm really, really happy about that. I love her so much, and  my parents and I are back on the same page, and  they are so supportive of me. I think I take it for granted sometimes, um, they are so supportive of me,  and they try hard every day. They try hard every day.

Well, it almost brings me to tears, um,  it's, uh, incredibly, like, challenging thing that you went through, but I think that  there's no way that you guys are not. a lot closer as a result of this, um, and your parents are  also so strong like you are, um, and have obviously instilled that in you, um,  and grown, I'm sure, alongside you.

And, you know, I'm, as I get older, I'm realizing I'm, you know, getting closer to getting married and Maybe hopefully having kids one day and realizing like no one has anything figured out, you know adult It's their full first time as adults, too  and so everybody makes mistakes along the way, but I admire the forgiveness that's been  given on on both ends and Just the dedication to continuing to love and support each other, I think, is incredibly admirable, um, and, and beautiful to hear about.

No one has it figured out. And also, every child is so unique.  You don't know where you're going to be handed. Yeah.  So, there's that too. Yeah.  If you had any sort of advice to  siblings or parents or caregivers of, of patients that are, you know, going through something similar to you, is there anything that you would offer them?

Definitely. Um, for starters, I would  commend them  on whatever they've been through, whatever they've handled it.  I hope and assume that they've always had  the best interests in mind. And,  and I would say, you know, remember that whoever's sick in your family, whoever has the illness or whatever it is,  remember that it.

They never wanted this and that they are trying their best to, at all times, even when it seems like they're not trying at all,  they are trying their best at all times.  And just like you are. Just like the caregiver is and the sibling and,  and it's just a gift that you, you guys are able to be with each other.

So  I appreciate your time together and  love each other. Yeah.  I think that's a.  A really great way to look at it is, like,  so many people don't get to spend time with their loved ones, and it's so hard, right? Like, you would never wish anything like this upon anybody, um, but I'm sure that you have some, there are some aspects of what you've been through that, um, have made you grateful in some way, and I, I, I don't mean to put words in your mouth, but I know that that's something that We've talked about before, um,  and for me, when I got sick, like, my  mom, because of the pandemic, was able to work from home and take care of me, like, I was, like, on the couch all day, and she was, like, between meetings, like, quickly throwing food together to, like, deliver it to me, because if she didn't cook, I wouldn't eat, and, like, going, like, places, like, she needed to drive me everywhere, like, if I had to go somewhere, because I didn't have the energy, and, like,  That's time that usually parents of a 23 year old never get with their child, and it was incredibly challenging for her to navigate that, especially when, you know, parents just want to help, um, and they don't know how, because doctors also don't know how.

Right. It makes it really, really, um, really tricky, but I do know that. That time that we had together, even though was like not in the greatest of spirits, is something that I would never take back, so. Yeah.  Yeah.  Um, would you say that  there is  anything that you wish,  in terms of resources, were available to your parents at the time, and what that would look like in an ideal, fantastical world?

Okay. Yeah.  So,  you know, online resources, we're sure we're lacking. Um, even just like looking up, I have this sort of thing and I don't know what this means. You know, everything would point towards typically mental health. Um, and like I said, that is very valid and very real and like  just as important. But if that's not only the only thing that's occurring, then it's not that helpful.

So online resources, like when you have a Google search and also just  For my parents, I'd say, like, a support group for them, like,  something for them, because I know they were part of a Facebook group about dysautonomia and stuff, but they didn't find the environment to be very healthy. So, I would say support group for them  and resources about, you know, what's going on and how to handle it.

Yeah.  I have, like, felt similarly that there  are  a lack of resources. Um, And also the resources that people desire, I think, are very different.  Uh,  it sounds like your parents were kind of looking for  support, encouragement, and some positivity, and, um,  you know, everybody knows the reality of what they're living with, and I think the reminder of that,  um, through hearing, like,  more tragedy,  you know, makes you feel like you're less alone in experiencing that, but doesn't necessarily Help you move forward.

At least that's my perspective. Yeah, I, I even have said in the past like, Okay, it's really great to know other people are going through this.  But once I know, I don't need to keep knowing. Like, I, I get it. People are going through this, it's great. And I'm not alone.  But I really want to connect on it in a different way.

I'm sure they feel the same too, my parents. Yeah.  Um, well, thank you so much for, for sharing all of that. Um,  I would kind of love to hear your,  any like grand plans that you have or big goals that you have, um, now that you've seen, you know, a little bit of of physical improvement. Um, if there's anything that you're working towards or, you know, sometimes it's just my goal to be able to get through the day and in my plans, which is also so valid, too.

Um, but I'm curious to hear about You know, how your outlook on the future has changed given, you know, some of the improvement you've seen.  Yeah, you know, I went from thinking, I'm doomed, like, I have no way out of this, to  really knowing that my future is so good and knowing that my future is so bright.

And,  well, for starters, I'd really like to have a full day at Disneyland. That's been on my list for a while.  Love Disneyland. But other than that, I would say, you know, I'm planning on graduating high school next year, finally.  And I would like to then further my education, um, maybe, maybe study psychology and, uh, religion.

And also,  um, gain other  certifications for Eastern medicine. And create my own sort of practice where I can,  where I can treat people's mind, body, and spirit. So. That's the thing I really want to do. I, I think I'm on this earth to heal. So I'm very excited for all that's to come.  That is so exciting. Um, and congratulations on the progress that you have made, um, and all the hard work that you have put into that.

Um, and also we need that, those kinds of providers that  are treating the patient holistically. Um,  and so there's going to be no shortage of people that will need your services one day. Yay.  Yeah.  Um,  of course, I  would love to hear about, um,  You know, the community that you have built for yourself once you were able to start to take on some more relationships, um, you know, it, it takes a lot of energy to sustain relationships and I think that's one thing that's really hard about  navigating this, like you mentioned, it was like  friendships kind of fizzled away when you first started.

You know, things got really, really hard. It's impossible to explain to people what's going on. And in addition to be able to see them and, uh, maintain, you know, constant communication if that's necessary. Um, so I'd love to hear a little bit about.  the  people in your life that have, um, been added to your community since you've seen some improvement.

Yeah, so through that non profit chip that I talked about earlier, I've met my best friend right now, and I've not met her in person, so. I'm hoping to do that this summer, but she is someone who also, uh, lives with a chronic illness and so we are able to understand each other in a way that is really special and you know, if I can't respond to a text for a few days and she can't respond to a text for a few days, we We don't judge and we just, we just love each other anyway.

Yeah. So, so that's really great and I have also my, my behaviorist that I talked about, my therapist. They're big parts of my support team.  Um, I also have, let's see, I have,  we  talked about the, uh, the community that, You have also, um, stepped into. Yes. So I have a favorite podcast. Uh, maybe this will be my new favorite podcast, but, um.

But I have my favorite podcast, podcast, let's say, um, and the host of that created a community online  where anybody can join and get to know each other and share some experiences about spirituality. And through that I've made a few new friends. I talk to them pretty often. I love checking in with people just seeing how they're doing and not expecting a funny response.

So Uh, that's, that's something really great about my current relationships  and I've become friends with a few people there and they just understand me in another type of different way where they understand my spiritual side and my thoughts and feelings in those ways. So that's been also really cool.

Going back to what you said about not expecting a phony response, I,  I think that having people in your life where you can be upfront and honest with them about, you know, how you're doing is so important.  Um, talk a little bit about that.  Yeah, so,  actually, when I, when I first moved, and we did that move that was really traumatic for me, and I, we actually moved back to where we started.

We moved back to California where I live.  And  I tried hanging out with my friends, and I love my friends that I used, that I, most of my friends that I used to have. Um, I, and that I still have some of them, of course, but when I first moved back,  I,  no one wanted to hear really what I was going through. No one really at my school, the ones I was, weren't as close with, no one really wanted to hear what I was going through and  their conversations were very surface level.

And I was like, okay, like  I feel like I've just had my world flipped upside down and I'm not like ready to just like not have that be a part of my conversation right now. So. So,  having people that you can be honest with, and they're honest with you, I mean, not only does that lead to a deeper relationship with that person,  but I think expressing how you feel, not even hearing the response that might be really helpful, but And just expressing how you're feeling honestly is  such a big deal.

I was just talking with one, this, I was talking about this topic with one of my friends from that, uh, spirituality group and he was saying how sometimes it's just a saying it. It's just saying it and not even the response. But sometimes the response is also very helpful, of course, when you're being honest.

So that's really, I think, something important. Yeah.  And I think that in my experience, at least with building relationships with the people  Like, the disunderstood and chronic illness community, it's,  I think everybody recognizes that  it is important to be able to express those things and to share how you're feeling, and also to not expect anything in return, um, not desiring any pity, not wanting people to feel sorry for you.

Um, but just like acknowledging that that's something that you're going through and I think in a relationship, whether it's, you know, a friendship, a family relationship, a romantic relationship, you need to be able to express kind of where you're at.  So then people also have a better understanding of like, what are you able to contribute at this time?

Maybe what is, why are, you know, things looking maybe a little bit different right now? Like. Oh, I'm actually able to share that, you know, things are improving over the last couple of weeks. I have a little bit more energy. Like, I'd love to see you being, you know, being open about where you're at. Um, also allows people to, like, have realistic expectations.

And these are all the things that when you're healthy with, you know, quote, unquote, unlimited energy, you may not think about. Um, but, you know, the people that care.  Want to hear, um, and, you know, want to help, but also know that there's only so much they can do. Um, and so those are the, the people that I have at least, um, come to cherish and appreciate when, you know, when they're like, do you want to talk about it or do you not want to talk about it?

Uh, just meeting somebody where they're at and not giving unsolicited advice is very important. And,  and like you said, just acknowledging and. Validating what they're feeling like, oh, I'm, I'm, I'm really not up for this right now. I'm really tired, or I'm really whatever. And they say, oh, okay. I hear you.

Like don't worry about it. Just, you know, we're just gonna take it at your pace. Yeah. Yeah. So we had a conversation a long time ago when I was starting misunderstood, and I would.  Love to know what  motivated you to contribute to this community.  Yeah.  At first, I had no desire to be in this community once I felt better.

I was like, as soon as I'm feeling better, I'm out of here. I don't want to associate with this. It's been a terrible part of my life, but that's not the case anymore. I take that back.  There's no judgment.  Yeah, I, I definitely,  I feel like the people in this community are so special. I feel like  they're unique and they have been through something unique and that makes, that makes it feel like  this is something special.

This is something that matters. These are people's lives, their experiences, years of their lives that might, might be able if, if given the right help might be much easier and might be much more joyful even. And if I can do anything to  help people who have gone through something similar to me  Let them know that they're not alone, let them know that there is no pressure to be any sort of way, or to feel any sort of way,  and just do anything in my power to, to  have a shortcut for them to feel better as soon as possible.

I'll do it. I,  I'm here for the long run. I'm here to like, you know, I'm here to I'm here to help people. So, yeah.  Yeah, your amazing goals of, um, one day becoming a provider to treat people in, in all aspects of their mind, body, spirit, health, um,  I think is also very much a testament to Um, your, you know,  determination to be able to help people that are  dealing with these incredibly  challenging circumstances where there's no road map, um, and being able to address, you know, all parts of the person, um, and understanding that that's important I think is really important and you also have the personal experience.

Yeah. And, um, how do you feel like your  experience is going to make you, you know, a better provider if, if you are able to, um, You know, bring that clinic to life one day. Yeah.  So I, I feel like, you know, there's only so much you can learn from a book and from reading about it  and  just  knowing there was always goals and expectations to tell.

Like okay, we want you to be able to feel better by this day in this way. We want you to be able to do this by this time. Whatever it is, like there's always goals that you have  and to know that  whatever you do is okay. However you're feeling is okay. We're going to aim towards this, but I'm here to hold your hand.

Like I've been through it. I,  I know what it's like and you can't be working at a hundred percent all the time.  So being able to approach a patient, let's say, and having it be  a gentle healing and  having it be personalized and, and having it be personal too. Not just, we're gonna like show you this medication and do this and do that,  and having it be just a real connection with a patient and understanding where they're coming from and then working with them from there.

I think that's gonna be the most important thing. Yeah.  And you.  You went through the process of probably having timelines placed on you, your body and your mind, and,  um,  so I think that your  perspective is going to allow you to be a patient and empathetic, um, person in whatever you end up pursuing.  Um, and I'm hoping that some  medical students or medical professionals are able to listen to these podcasts and kind of gain a better understanding of the experiences of patients living with, you know, dysautonomia, chronic fatigue, all, you know, post viral illnesses, all of these invisible illnesses.

Um, and the majority of them, thank goodness, don't ever have to go through this. Um, is there anything specific that you would offer them, um, as a form of advice or, you know? Approaching patients like us.  Yeah, just  like kind of like what I was saying in two of my previous answers. No, they were always doing our best.

It is not doing your best is not meaning doing the very best you can possibly do. And  if you have to break your legs and whatever, like. just to do that best, then that's what it is? No. Sometimes your best may be zero effort, but that is the best you can do.  So, zero effort, you know what I mean? Like, like, zero what appears to be effort.

But,  but,  so I would just say,  know that we're trying our best. Know that we want the best for ourselves. We're not here wanting to get worse or wanting to just be in the same position we are now. We want to feel better. We want to do more.  And if you could help us do that in any way, then.  Then that would be fantastic.

Yeah, I think.  That's, it's  challenging, um, to, to set expectations for,  for patients and, and what they're able to do. You know, the, the provider is not existing, um, inside of our bodies and our experiences and in the context in which we're living. Um, but being able to provide, you know, some perspective to them is, is something that I really hope to do.

Um, and I think you also will. Um, be able to continue to do that and, you know, if you pursue a psychology degree and you have classmates that you're working with and, um, you know, you're always going to be able to  provide them with some wisdom and your experiences that they're going to gain from that. So  yeah, um, going back to some of the spirituality work, um, to kind of wrap up our conversation today, is there anything that You feel like has been

I guess that stands out or has been really impactful to you in terms of like  what you Focus your perspective on or when things are really hard. What is it that  You, I guess, lean on to, um, to change how you're feeling or your outlook on a given situation. What is it that really keeps you feeling grounded and at peace?

That's a really good question. Um,  I mean, there are a handful of things, but if I could choose one, I would say,

it's hard to explain, but I'll do my best. So. I personally believe that everything is energy. I think our heartbeat is an energetic force, and energy never dies, and that's why we're all energy. So, I think that that energy is light, I think that energy is goodness, and  when I'm in a dark place, I remember I had this really bad migraine on top of all my other symptoms one day, and I was completely by myself, and it was not really nice.

So, at one point I just had to say, like,  I am light,  things are okay, like, My body is suffering right now,  but my spirit is the same and my spirit is with me  and  I'm actually okay deep down. My body is going through something and  if I can remember that I am light and I am,  and I'm okay,  you know, then that's, that's something I found to be very helpful.

Yeah,  well, I have certainly gained, um, so much wisdom from our conversation today and from all of the stories and experiences that you've so willingly shared with our community and on your blog, um, And I just want to thank you for your willingness to open up about all of this and your motivation to continue to contribute in ways that help others.

Uh, you are doing such great things in the world and I personally and on behalf of the people who have been, you know, able to listen, um, really, really appreciate it. And look forward to seeing where, um, life continues to take you. So, thank you, Daniela. It's been a pleasure, and I'm so grateful for Dysunderstood and all the work you do as well.

Well, thanks. We'll talk very soon. Okay. Okay. Bye. Bye.  Feeling inspired to share your own Dysunderstood story? Head to Dysunderstood. com slash contact us. You can find all things at that website or at Dysunderstood on Instagram  and TikTok. You can find me at Ella Eastin. Thanks for listening.