See Me the Podcast- Episode 2

Myria and Genevieve host the See Me Podcast focusing on non-apparent disabilities. They stress they are not medical professionals and recommend consulting healthcare providers. The Hidden Disabilities Sunflower represents a range of conditions. Myria shares her experience with psoriasis and psoriatic arthritis, along with undiagnosed depression. She also practices hypnosis professionally. Genevieve discusses her mental health challenges, including PTSD and schizoaffective disorder, and the stigma surrounding mental health conditions. Both hosts plan to delve deeper into these topics in future episodes. Myria: Hello, friends. Welcome to See Me, the Podcast, Episode 2, a forum where we share, discuss, and bring awareness to non-apparent disabilities to everyone. Wherever you are right now in the world, thank you so much for joining us today. I hope you're happy and well. I'm Myria. Genevieve: And I'm Genevieve. Before we start our episode, we want to state that we are not medical professionals. Please do not take anything we say as medical advice or treatment. If you want or need to discuss your personal medical situation further, please consult your medical professional. Myria: In our debut episode, I felt like I was unable to properly explain the hidden disability sunflower and its purpose. So I decided to go back onto their website at hdsunflower.com to read verbatim how they described their mission because I didn't feel like I was doing it justice. So their website says that while some of us experience a disability that is visible, many have a non-apparent condition or experience a combination of both visible and non-apparent conditions. These disabilities can be temporary, situational, or permanent. They can be neurological, cognitive, and neurodevelopmental, as well as physical, visual, auditory, and include sensory and processing difficulties. They can also be respiratory, as well as chronic health conditions such as arthritis, diabetes, chronic pain, and sleep disorders. As diverse as these conditions are, so are your individual access needs and the barriers you face in your daily life. So you can opt to wear the sunflower to discreetly be seen in shops, at work, on transport, or in public spaces. The Hidden Disabilities Sunflower is a simple tool for you to voluntarily share that you have a disability or condition that may not be immediately apparent and that you may need a helping hand, understanding, or just a little bit more time in shops, at work, on transport, or in public spaces. Even though my sunflower dream was what originally inspired me to want to spread the word about non-apparent disabilities, the Hidden Disabilities website was what fully put it into perspective for me. The website hdsunflower.com has a shop where you can purchase lanyards, cards, keychains, and retractable ID card holders, and much more, that has the universal sunflower symbol, as well as membership options to choose from if you're interested in being involved in their movement. However, since we are not current affiliates with them, before I send anyone to their site, I want to purchase a few items from them and make a personal critique. I will share my experience with the site on one of our next episodes once I receive the merchandise. Anyone knows more about the Hidden Disabilities Sunflower website, their mission and purpose, or have any personal experience with them, we would love to hear from you. Please share your information with us at seemethepodcast@gmail.com. So before we continue, I had an interesting story. I was traveling to Florida the other week, and as I was rushing to catch my plane and get to my gate, I had actually seen the Hidden Disabilities Sunflower sign at one of the checkout lanes. I was pretty excited to see it, personally, and for me to know what it represents, I was just like, wow, that's pretty cool. I was a little too busy, I mean, excuse me, I was a little too much of a rush to take a photo, but I really wanted to take a photo of it, and then it just kind of blew my mind a little bit to think that just only a few months ago, I would have had no idea what it meant. Isn't that crazy? Genevieve: That's wild, yeah. That's pretty cool. Myria: Yeah, thanks. Genevieve: So last week, Myria interviewed me about my experience living with depression, PTSD, schizoaffective disorder, and type 1 diabetes. Since that podcast episode, I have been doing a bit of reading, including the Collected Schizophrenias by Esme Weijun Wang. It's been really validating in that her experience mirrors mine in some ways, and I even had kept secret instances in the past when I had, during an episode, lost time or kept hallucinations private, even to those I loved the most, and even to you, Myria. I remember on that wonderful trip to Armenia that we took, I experienced an episode mid-institute. I could not remember part of the day at all, heard a peer's voice come out, not like her own, but like that loud and deep male voice on The Exorcist, and I hadn't even seen The Exorcist yet, but in any case, my eye movements were erratic, and I knew then that I was hallucinating, but I tried to temper it and keep going. It eventually subsided, and I was able to complete the institute without too much interruption. But not telling people I loved that I had experienced that was a secret that weighed on me. It's been three years since that happened, and I have been quite stable with my mindfulness practice, including yoga and meditation, as well as medication helping. Anyway, I'm three-fourths through the Collected Schizophrenias, and it is illuminating in how treatment of people with mental health disabilities has evolved over the years in some ways, and still remains very harmful in others. The stigma is what gets me. You know, the way people casually throw around words to describe murderers or deranged individuals as schizos or psychos is not okay, and I have my own internalized ableism to rid myself of related to that. Anyway, if you want to read something that is personal narrative, woven with history and research very beautifully, check out the Collected Schizophrenias by Esme Weijun Wang. You will not be disappointed. Myria: Wow, that's really interesting. I had no idea that you had had an episode, especially since I was on that trip with you. I hope it's not too personal, but you mentioned that you had lost time. Can you explain what that means, to lose time, or what it felt like? Genevieve: Yeah, so first of all, I want to say that I'm sorry I didn't tell you what was happening with me. I think it scared me, and I also thought I was on medication, so it shouldn't be happening anymore, and I kind of shoved it under the rug, and there was some shame about it. Anyway, back to your question, yeah, I remember coming up the stairs of the university after what must have been a breakout session, and I had no recollection of where I had been, what I had done, who I had spoken with, or anything, so that's what it was to lose time. Later, one of the hosts talked about how the day had been difficult, but I didn't know to what she was referring, so I had a sneaking suspicion it may have been related to my lost time. Myria: Oh my gosh, yeah, no need to apologize. I get it. At the time, you weren't ready to talk about it, and I'm just glad that you were okay and that it didn't become more serious. Do you have any idea what might have triggered it? Genevieve: No idea, except that maybe we hadn't gotten enough sleep with all the jet lag and all that. I really don't know, because I got along with my peers well and enjoyed their company. It just seemed to sneak up on me out of nowhere. Anyway, enough about me. Today, as mentioned in a previous episode, we are going to interview Myria. So, Myria, can you tell us a little bit about yourself? Myria: Yes, of course. Hi, everyone. I'm Myria, and I'm a certified hypnotherapist and neurolinguistic practitioner. I do hypnosis to help people with personal problems or issues such as weight loss, smoking cessation, anxiety, sleep, just about anything, really. I've even helped a couple to improve their relationship and attraction to each other. Really, just about anything can be worked on with hypnosis. As long as the subject is open and willing to accept the suggestions and are truly desiring to achieve the outcome. I tell all of my clients that hypnosis is not a miracle cure or a magic wand. The work done is always dependent upon the subject. They have to want to achieve the goal. I have also done hypnosis for current and past life regression, where I help people revisit their current past or their past lives. As a matter of fact, I have hypnotized Genevieve several times. Genevieve: It's awesome. Myria: I've done regression for her. I only share this because I have been given permission by Genevieve to share this information. Enough about hypnosis for now. I just know that whenever I disclose that I'm a hypnotist, people are often very curious about it and have a lot of questions. I do plan on going deeper into hypnosis in a future episode, so please visit us for that if you are interested. Genevieve: Thanks for sharing that. What would you like to share now about your disabilities, if anything? Myria: As stated in our previous episode, I have psoriasis and psoriatic arthritis. They are both diagnosed. I also have undiagnosed depression that is linked to chronic pain and certain medications and traumas. Let me start from the very beginning, I guess. When I was 13, almost overnight, I started getting scaly, itchy, dry patches all over my body and redness and irritation in my scalp. The longer I had these dry patches, the itchier they became. The itchier they became, the more I would scratch. The more I would scratch, the bigger they became. Some of the patches would get so big they would run into each other and then they would become an even larger patch. I would scratch so much and so hard that eventually I would bleed. It ruined a lot of my shirts from the blood staining my clothes. Usually that would happen overnight because I would scratch during my sleep and it's hard to control it when you're sleeping. At 13, I was terrified because I didn't know what it was. I'm sure at any age you'd be terrified experiencing such symptoms for the first time, but the diagnosis was psoriasis. Anyway, the scale on my head spread to my forehead and I was so embarrassed by it. I attempted to cover the scales and irritation with my hair. It was the late 80s and the big hair and bangs hairstyle was starting to be popular, so I had an excuse to cover them up with my bangs. People could still see the dry, scaly irritation. I was constantly being asked, what's wrong with your forehead? I would just tell them, I'm allergic to hairspray. I didn't want to have to explain to people what it was or for them to think that I was contagious, so it was easier to say it was an allergy. Everyone knows that an allergic reaction is not contagious. It kind of hit two birds with one stone, which was the easiest answer for me to come up with. I even gave my best friend the same lie. I was too embarrassed to even tell her or talk to her about it. Luckily for me, I had a best friend who wasn't nosy or overly inquisitive. Her name is Margaret, by the way. I just want to give a shout out to Margaret for being the greatest childhood best friend anyone can have. I'm really sorry I lied to you. I think this is the first time that I've actually apologized for that since we never spoke about it. I honestly don't know if she knew I was lying to her. However, if she did, she never said anything. I really appreciated that about her. Genevieve: Yeah, that makes sense. Since you kept your disability a secret, how did you cope at the time? Did you have anyone to confide in at all or a community to help? Myria: Back then, we didn't have access to the Internet like we do now. I couldn't just look up my condition and find out information about it or reach out to others to find out if anyone else was suffering from the same condition. No, I really did not have an outlet. I was young, scared, embarrassed, and felt really alone in my struggle. I didn't know if psoriasis was fatal. I didn't know if it was ever going to go away. All I knew was that it was incurable, because that's what my doctor told me, and that the only thing I could do was to keep the outbreaks under control. It was so much harder to do, really. Back then, they didn't have the advanced medication that would help reduce the dryness and the patches. They didn't have oral medications or injections to help reduce the symptoms like they do now. I think I honestly tried every new ointment, shampoos, oils, tars, et cetera. Anything that they had available, I was the first subject to try it. It just really did not give me the results that I needed. Not only that, all the medications were sticky, smelly, oily. I was a walking grease ball, and that really added to my embarrassment. I felt really sad and alone. Then, when I was 17, was when the arthritis started. It first started in my feet and toes, and then my hands. I wasn't sure why I was starting to encounter so much pain and stiffness. Back then, I had no idea that psoriasis and psoriatic arthritis were linked. I felt like I was just unlucky or something. I was working as a waitress part-time while I was going to school. I finally discovered ibuprofen because I was in that much pain. I started taking a lot of ibuprofen to help with my pain before work, before school. Little did I know back then that long-term use of ibuprofen was just not good for me. In a sense, I guess I might have become addicted to it. I was trying to tell people that I think I have arthritis, and the response was always the same. Oh, you're too young to have arthritis. I even told my doctor at the time, but he didn't believe me. He told me I was probably just having growing pains. Genevieve: That's awful, and that has to suck to not be believed by your doctor. Myria: Yeah, for sure. I really thought I was going crazy. To answer your question, through my pain and suffering, I decided that I had to find answers for myself since no one believed me. The way I coped was by trying to find as much information on my condition as I could. I spent hours at Barnes & Noble reading books I couldn't afford to buy because I was still in high school. I was looking for anything that would tell me about anything about what I was going through. I felt like going to Barnes & Noble would be more informative than going to the library because Barnes & Noble had more of the most current books. I probably couldn't find that at the library. It wasn't until I was in college that I found a book about psoriasis. For the life of me, I can't tell you what the title was or who the author was. I then discovered that arthritis was truly linked to psoriasis. You can only imagine how excited I felt to discover this information. It reassured me that what I was feeling was real. I finally discovered that the best way to control arthritis was by working out. The best way to help control the symptoms of psoriasis was to stay hydrated, stay healthy, work out, and maintain a healthy diet. It was nothing I had ever been told before by anyone. Nothing I would have assumed that would even be true. I guess I just assumed that working out would make the pain worse. It didn't make sense to me at the time, but I was desperate and tired of suffering, so I was willing to try anything. Luckily for me, I had just started college at the university in Lincoln, so I had free access to the university gym. My hands, elbows, and other joints were in so much pain that when I first got started, I could barely lift five pounds. But that was where I started. Little by little, I was able to lift heavier and heavier. I lifted for the arthritis, and I did cardios for the psoriasis. So I ran, played racquetball, and with the help of some steroid cream that my doctor had prescribed to me and working out, I was able to get rid of all of my arthritis pains and control most of all of my psoriasis symptoms from the time I was 20 until I was 34. At 34, the arthritis came back with a vengeance. I'm not sure what triggered its return, but it did. I guess I just assumed that maybe it was just age catching up to you, your immune system doesn't work quite as well. But I've been in pain ever since, and even though there are advanced medications that help with arthritis, everything has its life expectancy. The pain is under control for a little while, but then the pain levels go up and down. Some days are better than others, and some days it's just so unbearable that I feel like I've broken a bone. Mornings are always the worst when your body's stagnant and you haven't moved much during the night. Sometimes it just feels like you've been hit by a car. It does take a little bit of time to get my joints moving again each day. It feels like you're just kind of starting over, you know? Genevieve: Yeah. Thank you for sharing that with me and with our audience. So what do you wish people were more understanding about related to your disabilities? Do people make assumptions about what you're going through? Myria: That's a great question, really, because I feel like people forget that I have arthritis. For example, my friends and my family, my loved ones. Throughout the day, once my body gets moving, I move and carry on with my daily activities like a normal, capable person. I'm the type of person who likes to stay busy, likes to stay productive. And, you know, one minute I'm going to the gym, jumping around. I seem perfectly fine and mobile. And then other minutes when the pain kicks in, I feel like it probably confuses them, you know? How was she just fine before and now she's limping and struggling to move? But one of the struggles with arthritis is that the pain level can go from a 1 to a 10 at any given time. There's no rhyme or reason for it. And as far as, like, assumptions, I feel like when I'm in public, people who don't know me will see me limping and they'll just assume, like, I injured myself. And so I get strangers who ask me a lot in public, oh, what did you do? How did you hurt yourself? Or why are you limping? And it embarrasses me to say, no, I have arthritis. I think it makes me sad because it's just a question that's never going to go away because my pain is chronic, you know? It's never going to go away. And I'm the type of person who I don't like drawing attention to myself or my disability. And sometimes I wish that people would just mind their own business and not ask. I know that might sound harsh, but that's kind of how I feel sometimes. And maybe it's just me. Maybe I'm just being too sensitive. Genevieve: But I don't think it's just you. Myria: No, you don't think so? Honestly, I would love to hear from others about what their thoughts are regarding that. So, yeah, so if anybody has a different opinion than I do or if you do have the same opinion as me, I would love to hear from you. Please email me at, or excuse me, please email us at seemethepodcast@gmail.com. And that's see me, as in S-E-E-M-E, the podcast, at gmail.com. Genevieve: Yeah, I think that what you said is totally understandable because you never know how someone is going to react or respond either. I know with my type 1 diabetes, when I used to be thin, people would question how I had diabetes or would question if I even had it. And now that I'm bigger, they assume it's because of poor diet or lack of exercise, like it's my fault somehow. It's just easier to hide my insulin pump under my shirt a little bit when I have a longer sleeve shirt than worry about other people's judgment or exaggerated sympathy. Myria: Yeah, yeah, for sure. I get it. Genevieve: So, anyway, how do you cope with your conditions today? Do you have routines or a support system? Myria: Well, I do go to regular doctor's checkup because I do take medication for some of my conditions. As far as my, excuse me, I take medication and I use creams and steroids for my dry patches. And as far as my pain, I do self-hypnosis and I do still try to stay active and try to just work out as much as I can. I am getting a little bit older now, so it does make it a little bit harder. And it does make it a little bit harder for me to, like, recover from injuries and soreness, too. Genevieve: Sure. So would you be interested in talking maybe a bit about how you're multiply marginalized as an Asian mom with non-apparent disabilities? Myria: Wow, yeah, that's an interesting question. I've really never thought about that. I've never really thought about it as regards to my race, either. But let me think. So, okay, yeah, I remember a situation. When I was first diagnosed and I had finally mustered the courage to tell my mom about my condition, she decided to hire a monk. My parents are both Buddhists. They were raised Buddhists and they did practice Buddhism. But my siblings and I, we really didn't because we were pretty young when we first immigrated to the U.S. But anyhow, I came home and she had hired, there was a monk in my house and he had done some ritual or chanting or whatever. And he blessed, he basically blessed my illness. And I remember him spraying, like, maybe his version of, like, a holy water on me. And I don't really know much about the religion. And like I said, you know, back then we didn't have access to the Internet like we used to, like we do now. So it wasn't really, it wasn't as easy for you to look up information or find out things about anything. I just remember being 13, I was really uncomfortable with the whole thing, you know. I was uncomfortable once again being the center of attention. However, in the days and weeks following the monk's blessing, I noticed that my dry patches were slowly disappearing. I couldn't believe it. Then eventually most of them were gone. But of course, you know, in time, they returned. I guess just like anything else, you know, it kind of, it goes away. The medication or the ritual or whatever kind of fades away. And until this day, I honestly have no idea how it worked. But it did. So dealing with my disability as a single mom, I can honestly tell you that it has been a blessing in disguise. It forces me to battle through my pain every day because I don't have an option. Like I can't just not be a mom one day, you know. I remember when my ex-husband and I first separated, I was really depressed. I was mentally going through it. And some days I didn't want to get out of bed. But then I thought about my son who was maybe 10 at the time. And it just, I just didn't have the option of not getting out of bed. And it's the same thing with having my disabilities. Some days when the pain is so bad, I don't want to get out of bed. Or when my depression kicks in and I just want to lay around feeling sorry for myself, I think about my son. And it forces me to get up. You know, it forces me to get up and it forces me to get on my day. And not only do I have to get up for him, but I have to do it with a smile. You know what I mean? Because I don't want him to, I don't want him to see me struggle, I guess. So he's definitely made me stronger. Being a mother kind of makes me forget my pain. Not in a sense that, you know, my pain disappears or anything because it never does. But it distracts me from my pain because I have someone else to think about other than myself. Genevieve: Yeah, definitely. So thank you for sharing that with us, Myria. And I have to say that you're a good mom. Myria: Thank you. Genevieve: Is there anything else you'd like to circle back to or say? Myria: Yeah. You know, as a kid and young adult, I just remember I wished back then I had someone to talk to or an adult who knew about or understood my condition who could have helped guide me. I had to learn everything on my own. And it took a lot of time because I, you know, I did feel tremendously alone. And this is why this podcast is just so important to me. My desire to spread the word about hidden disabilities is just so great. Because I don't want to feel, I don't want anyone to feel what I felt as a 13-year-old child or as a 13-year-old me who didn't have an outlet to be able to talk about my struggles. And I'm not just talking to the young people out there. I'm talking to everyone. Anyone who feels alone in their disabilities, please know that we are here for you. If you would like to share your stories with us, please reach out, comment or email us at seemethepodcasts at gmail.com. We would love to hear from you. We would love to share your experience with others. If you'd like to share your interesting story, we would love to have you on the show. Genevieve: Yeah, absolutely. So now that we have these podcasts, we can connect with others in our audience and elsewhere who have their own experiences with non-apparent disabilities, stigma, access issues, or policy problems. Or maybe something unrelated. Like, what are you excited about? Anyway, I think that this is all the time we have for today. Thank you for joining us for Episode 2 of See Me, the Podcast. You can access past episodes by going to https://substack.com/@seemethepodcast. And please come back to check out our next episode. We will be interviewing Colleen O'Doherty, who has written a full-length play on long COVID called Heavier than Water. I'm so excited. And we're so excited. And I hope you are, too. Bye for now. Myria: Yes, have a wonderful day.