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Hi! My name is Claudia Kobelak .  I’m 21 years old, and outside of my health journey, one of my biggest joys is my two kittens, Coraline and Salem. They bring so much comfort and laughter into my life, which has been especially meaningful during difficult times. Over the past year, I’ve been navigating Superior Mesenteric Artery Syndrome (SMAS), May-Thurner Syndrome, Nutcracker Syndrome, Pelvic Venous Disorder, Systemic Lupus Erythematosus(SLE), and Gastroparesis. These rare health conditions have changed the way I live, but I’m learning every day how to adapt, advocate for myself, and keep moving forward. Question: What chronic health condition(s) do you have, and how long have you had it? Claudia’s Answer:  The main conditions I live with are vascular compressions, including Superior Mesenteric Artery Syndrome (SMAS), May-Thurner Syndrome, Nutcracker Syndrome, and Pelvic Venous Disorder. I was diagnosed with SMAS about a year ago, and since then, more diagnoses have followed. My doctors believe I’ve actually had these compressions for my entire life, gradually worsening as I’ve gotten older, likely because of an underlying genetic connective tissue disorder that may be a form of Ehlers-Danlos Syndrome. In addition to these vascular conditions, I also live with Gastroparesis and Systemic Lupus Erythematosus (SLE). Each diagnosis has added another layer to my journey and made me realize how long my body has quietly been carrying these challenges. Question:  If you were not born with your condition, what do you miss the most from before you had it? What do you grieve from prior? What’s one thing you were able to do before that you are unable to do now? Claudia’s Answer:  More than anything, I grieve the version of myself that existed before I went through the trauma of navigating the medical system. Those experiences have left me with flashbacks and deep anxiety around hospitals, which affect me every single day. I also miss the simplicity of being a carefree young girl who could play without pain and just enjoy life. Looking back, I didn’t realize how precious those moments were—being able to move freely and exist without constant worry about my body. Question: What are the main symptoms you experience? Claudia’s Answer:  My symptoms are wide-ranging and affect nearly every part of my life. I deal with nausea, fatigue, brain fog, abdominal pain, dizziness, headaches, vision issues, joint pain, and nerve pain. In addition to those, I also experience joint subluxations, random allergic reactions, chest pain, back pain, leg pain, and pelvic pain. The combination of these symptoms makes daily life unpredictable and exhausting—it’s never just one thing, but rather a constant layering of challenges that I have to manage at once. Question: How does your condition affect your daily life and school? Claudia’s Answer:  Before my health declined, I was a very driven and academically focused student. I took pride in my studies and worked hard, and that’s something I truly miss about myself. I started university a few years ago, but I’ve had to take my second gap year because keeping up with classes has been incredibly difficult. My pain and fatigue affect my day-to-day life in so many ways—plans often change last-minute, I need frequent breaks, and I sometimes have to leave places early. Even when I do make it out, flaring symptoms can take away from the joy of being there. My conditions have changed the way I participate in the world, and that loss is something I feel every day. Question: What are the toughest parts about living with this condition? Be as specific as possible! Claudia’s Answer:  One of the toughest parts is feeling like I’ll never reach the potential I could have had if I were healthy. My future often feels blurry because so much of my energy is consumed by managing my health, instead of pursuing hobbies, school, or work. This has left me feeling like I’ve lost a sense of who I am outside of my illness. Another very difficult part is the loneliness and isolation. Even when people sympathize, no one can fully understand the exact pain, fear, and exhaustion I live with. I feel like I’ve missed out on so many parts of life, not because I didn’t want to experience them, but because I’ve been fighting just to survive. Question: What tips or strategies have helped you manage your condition? Claudia’s Answer:  Becoming a strong advocate for myself has been the most important tool. Speaking up in medical settings and pushing for answers has made a real difference in the care I receive. For pain management, traditional medications don’t do much for me, so I focus on comfort instead. During flares, I rely on heating pads, blankets, a cold cap, and a dark, quiet room to create as much relief as possible. While these strategies don’t take away the pain, they help me get through the hardest moments. Question: What kind of support (from friends, family, or others) has been most helpful? Claudia’s Answer:  My boyfriend, Conrad, has been my biggest source of support over the past four years. He comes with me to nearly all of my appointments and helps advocate for me when I’m too exhausted to advocate for myself. He’s spent countless nights by my side during hospital stays, and at home, he goes out of his way to create a calm, comfortable environment that makes me feel safe. I’ve also been lucky to have a few close friends who provide emotional support and remind me I’m not alone in this. Their presence makes such a difference. Question:  What’s one thing you wish people understood about living with a chronic condition? Claudia’s Answer:  I wish people understood that being sick is not a choice. None of us would choose this life, and every day takes an incredible amount of strength to get through. Chronic illness impacts every part of who you are, and while you can still find joy and purpose, it’s always shaped by the reality of what your body can or cannot do. Find strength in stories. Join our community today!

Hi! My name is Jazz Wessel. I’m 19 years old, and I’m an actor, professional singer, and choreographer. Performing has always been a huge part of my life, and it continues to shape how I express myself today. I live with multiple chronic health conditions, including Amplified Musculoskeletal Pain Syndrome (AMPS), Functional Neurological Disorder (FND), Hypermobile Ehlers-Danlos Syndrome (hEDS), Postural Orthostatic Tachycardia Syndrome (POTS), Gastroparesis, Chronic Cholecystitis, Complex Regional Pain Syndrome (CRPS), Reflex Sympathetic Dystrophy (RSD), Juvenile Fibromyalgia, Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (CFS/ME), Auditory Processing Disorder, and more. This is my story! Question:  What chronic health condition(s) do you have, and how long have you had it? Jazz’s Answer:  I live with several chronic health conditions, including Amplified Musculoskeletal Pain Syndrome (AMPS), Functional Neurological Disorder (FND), Hypermobile Ehlers-Danlos Syndrome (hEDS), Postural Orthostatic Tachycardia Syndrome (POTS), Gastroparesis, Chronic Cholecystitis, Complex Regional Pain Syndrome (CRPS), Reflex Sympathetic Dystrophy (RSD), Juvenile Fibromyalgia, Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (CFS/ME), and Auditory Processing Disorder, among others. Many of these conditions have been present since birth, while others developed and progressed over time. Question: If you were not born with your condition, what do you miss the most from before you had it? What do you grieve from prior? What’s one thing you were able to do before that you are unable to do now? Jazz’s Answer:  I was born with most of my conditions, but I often miss the mobility I had before my first major FND flare. I grieve the career I once envisioned for myself on stage, especially with dance. Movement has always been a huge passion, but now I am unable to do many things—particularly jumps and turns—that once came naturally to me. Question:  What are the main symptoms you experience? Jazz’s Answer:  My symptoms are wide-ranging and often overwhelming. I experience nausea, fatigue, brain fog, abdominal pain, dizziness, fainting and pre-syncope episodes, headaches, vision issues, joint pain, and nerve pain. In addition, I also deal with seizures, hearing difficulties, and frequent joint dislocations. Question: How does your condition affect your daily life and school? Jazz’s Answer:  I often rely on different mobility aids to feel safe and need to sit frequently, which makes it difficult to fully participate in my classes since my major is very active. I also struggle with hearing and understanding what’s being said, which creates additional challenges in keeping up with coursework. Question:  What are the toughest parts about living with this condition? Be as specific as possible! Jazz’s Answer:  I live with pain 24/7, and many of my conditions have no effective treatments. Knowing that there may never be relief wears heavily on my mental health, especially during severe flares. The constant suffering and lack of solutions can feel overwhelming at times. Question: What tips or strategies have helped you manage your condition? Jazz’s Answer:  Several strategies have made a difference in managing my symptoms. B12 injections help with my joint pain, and weekly infusions are essential for both NES and POTS. I also rely on a full-body heated massage pad, which provides relief and comfort during flare-ups. Using mobility aids whenever I need them has been crucial for my safety and independence, and even simple tools like alcohol pads help ease nausea. Together, these supports allow me to feel more stable and better equipped to face each day. Question: What kind of support (from friends, family, or others) has been most helpful? Jazz’s Answer:  My family has been incredible. On the day I suddenly couldn’t walk—while we were out of my home state—my dad drove hours just to get me a mobility scooter so I could still enjoy our vacation. My mom takes me to all my appointments and advocates for me when I can’t speak up for myself. My dance team coach has also been amazing from the very beginning, adjusting choreography so I can participate safely without injury. And my friends have always gone out of their way to include me, adapting activities so I can be a part of them. Their support means everything. Question: What’s one thing you wish people understood about living with a chronic condition? Jazz’s Answer:  Sometimes it’s really hard to act strong. There are days when I need space to break down and express exactly how I feel—and that’s okay. Living with a chronic condition is exhausting, and allowing room for vulnerability is just as important as showing resilience. You are not alone. Share your story today!

Ms. Puff and Misha! Hi! My name is Sarah. I’m currently in university studying environmental science. I’m passionate about sustainability, spending time outside, and teaching adaptive dance—it’s one of my greatest joys! Alongside those passions, I live with Postural Orthostatic Tachycardia Syndrome (POTS). I’ve had symptoms for about three years, since my first COVID infection in 2022, but wasn’t officially diagnosed until November 2024. Here’s a look into my life! Question : If you were not born with your condition, what do you miss the most from before you had it? What do you grieve from prior? What’s one thing you were able to do before that you are unable to do now? Sarah’s Answer : I miss cheerleading the most. I cheered throughout high school and my first year of university—it was such a joyful and empowering part of my life. But after my POTS symptoms began, it became impossible. I would faint, throw up, and feel terrible after practices. I also really miss being able to travel freely—walking around new places without worrying about accessibility or crashing from symptoms. I used to feel energetic and adventurous, but now even getting out of bed can be a challenge. Question : What are the main symptoms you experience? Sarah’s Answer : My symptoms include nausea, fatigue, brain fog, abdominal pain, fainting and pre-syncope, headaches, vision issues, joint pain, nerve pain, dizziness, hot flashes, and temperature sensitivity. It’s a long list, and unfortunately, they tend to pile up all at once. Question : How does your condition affect your daily life and school? Sarah’s Answer : Being in university with POTS means missing classes for appointments or flare days, and navigating campus can be difficult when I’m not feeling well. It’s also tough to find work that won’t trigger symptoms, since most part-time jobs near my school involve some form of physical labor. Question : What are the toughest parts about living with this condition? Be as specific as possible! Sarah’s Answer : The hardest part is that people often don’t believe me because I “look fine.” POTS is invisible, and being young makes it even harder to be taken seriously. For a long time, doctors dismissed my symptoms as period-related or anxiety. It took persistence and finding a provider who would actually run an orthostatic test to finally get a diagnosis. Not being believed is incredibly discouraging and isolating. Question : What tips or strategies have helped you manage your condition? Sarah’s Answer : Getting on the right medication has been life-changing. I also bring someone with me to appointments now, which helps doctors take things more seriously. Just having someone advocate for me makes a huge difference in how I’m treated and what care I receive. Question : What kind of support (from friends, family, or others) has been most helpful? Sarah’s Answer : The best support comes from people who meet me where I’m at—friends who are okay with low-energy hangouts, FaceTiming when I’m stuck in bed, or offering salty snacks because they know it helps. But the most important thing is when people truly believe me. Validation and understanding go a long way when you’re dealing with an invisible illness. Question : What’s one thing you wish people understood about living with a chronic condition? Sarah’s Answer : That young people can have chronic health conditions—and that they are very real, even if you can’t see them. You can’t judge someone’s health based on what they look like. We deserve to be heard and treated with respect Join our community today! Gain support and share your experiences!

Hi! I’m Abigail Way, but you can call me Abby. I’m 18 years old, and one of my favorite things to do is read—I average about 115 books a year! Reading gives me a much-needed escape and joy, especially while navigating life with chronic illness. I live with Postural Orthostatic Tachycardia Syndrome (POTS), which I’ve had for three years, and gastroparesis, which I’ve been managing for about a year and a half. This is a peek into my life! Question : If you were not born with your condition, what do you miss the most from before you had it? What do you grieve from prior? What’s one thing you were able to do before that you are unable to do now? Abby’s Answer : I really miss the freedom of not needing to rely on medications. Before my diagnosis, I didn’t have to think so much about my health all the time. Now, I find myself missing out on events with my friends because of flare-ups. There’s a kind of loss in knowing I can’t just show up and participate without planning around how I’ll feel. I grieve that spontaneity. Question : What are the main symptoms you experience? Abby’s Answer : I deal with persistent nausea, fatigue, brain fog, abdominal pain, fainting and pre-syncope, headaches, vision issues, joint pain, nerve pain, and dizziness. It’s a lot to manage every day, and it can feel relentless. Question : How does your condition affect your daily life and school? Abby’s Answer : The constant nausea and heart rate issues mean I often feel sick, even on good days. I have to leave school frequently and keep a close eye on my vitals. It’s frustrating and draining to have my education and social life so deeply impacted, but I’m doing my best to keep up. Question : What are the toughest parts about living with this condition? Be as specific as possible! Abby’s Answer : Honestly, the nausea is the hardest part for me. It never really goes away, and it makes even basic things like eating or concentrating a challenge. I also struggle with feeling left out when I have to cancel plans or sit things out because of my symptoms. It’s tough watching others live freely when I have to pace myself so carefully. Question : What tips or strategies have helped you manage your condition? Abby’s Answer : Some small things that help my nausea are soda and gum—they don’t fix it, but they can make it a little easier to deal with. And when it comes to managing my POTS, salty snacks are a must! I love pickles and salt and vinegar chips. They’re actually a comfort food for me now. Question : What kind of support (from friends, family, or others) has been most helpful? Abby’s Answer : Finding friends online who also live with chronic illness has been such a lifesaver. It’s helped me feel less isolated and more understood. I also really appreciate when people in my life take the time to learn about my conditions—it makes such a difference when someone genuinely tries to understand what I’m going through. Question : What’s one thing you wish people understood about living with a chronic condition? Abby’s Answer : That it’s nonstop. Even when I’m smiling or out with friends, I’m still managing symptoms in the background. There are very few moments where I’m not thinking about my health or how to get through the next task. It’s a constant presence in my life. You are never alone! Join our community today!

Hi! My name is Hannah. I’m a huge animal lover, and I have an amazing service dog who helps me every day, providing support both emotionally and physically. I also have a passion for fishkeeping—there’s something incredibly calming and peaceful about watching fish swim around. Alongside my hobbies, I navigate life with multiple chronic conditions: Mast Cell Activation Syndrome (MCAS) for five years, Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (CFS/ME), and Postural Orthostatic Tachycardia Syndrome (POTS) for two years, as well as Long COVID and Reactive Hypoglycemia. My life has been a journey of adapting to these conditions, and I’m excited to share my experiences with you. Question:  If you were not born with your condition, what do you miss the most from before you had it? What do you grieve from prior? What’s one thing you were able to do before that you are unable to do now? Hannah’s Answer:  I miss the days where I didn’t have to constantly worry about something bad happening to me. Life before illness felt much more carefree, and I didn’t have to plan everything around my health. The world didn’t revolve around being sick, and I took for granted the freedom I had to make spontaneous plans and go out without a second thought. Now, everything from social gatherings to even simple errands has to be meticulously planned, and that sense of freedom I once had is something I really grieve. I miss being able to live without these constant restrictions and just enjoying life as it came. Question:  What are the main symptoms you experience? Hannah’s Answer:  My condition comes with a range of symptoms, which include nausea, extreme fatigue, brain fog, abdominal pain, fainting and pre-syncope, headaches, vision problems, joint pain, nerve pain, and dizziness. On top of these, I also deal with low blood sugar, which causes weakness, adding another layer of difficulty to my day-to-day life. It’s not just one symptom that I manage—it’s a combination that varies throughout the day, making each day unpredictable. Navigating these symptoms means constantly adjusting and finding ways to keep moving forward, even on the hardest days. Question:  How does your condition affect your daily life and school? Hannah’s Answer:  My health makes it incredibly difficult to attend school full-time. I can barely manage to be there consistently, and when I do, I’m often not able to stay the whole day. I have to plan everything around whether or not I’ll have the energy to do something. On top of that, I have to carry around a bag filled with medical supplies just in case, which is exhausting. I also have my service dog with me, and while she’s a huge help, she adds another layer to managing my condition. It’s a lot to juggle—trying to keep up with schoolwork, managing my symptoms, and living life while constantly factoring in my health. Question:  What are the toughest parts about living with this condition? Be as specific as possible! Hannah’s Answer:  One of the toughest parts is not being where I “should” be at my age. I’ve watched my peers continue with their lives—graduating, getting jobs, making plans—while I’ve had to step back and adjust my expectations. Seeing people move forward while I have to find a different path is emotionally difficult. It’s hard to deal with the feeling that my life is on pause, especially when it feels like the illness is dictating my every move. The loss of those typical milestones has been a big challenge. Question:  What tips or strategies have helped you manage your condition? Hannah’s Answer:  The support from my service dog has been life-changing, as she helps me with mobility and provides emotional support when I’m feeling overwhelmed. I also rely on mobility aids, which have been crucial in conserving my energy and helping me get through the day. Managing my condition means listening to my body and knowing when to rest or push through, and these tools have been key in helping me maintain some level of independence while coping with my symptoms. Question:  What kind of support (from friends, family, or others) has been most helpful? Hannah’s Answer:  The most helpful support I’ve received has come from people who are simply there for me—whether it’s listening when I need to talk or offering a hand when I need help. My mom’s advocacy for me has also been invaluable. Having someone who fights for the support I need and stands up for me when others might not understand has been a game-changer. The emotional and practical support from my family and close friends has made this journey more manageable and helps me feel less alone in this experience. Question:  What’s one thing you wish people understood about living with a chronic condition? Hannah’s Answer:  One thing I wish people understood is that we are trying our best. Just because our lives look different from what others expect doesn’t mean we aren’t putting in every ounce of effort to manage our health and our lives. It’s not about choosing to be sick or wanting attention—it’s about surviving and navigating the ups and downs, even when it feels like everything is stacked against us. We’re doing everything we can, even if it doesn’t always show on the outside. Share your story today!

Hi! My name is Amanda George. I’m 18 years old, and I regularly play guitar at open mic nights in my town. Music has always been a huge part of my life, and performing gives me an outlet to express myself beyond the challenges of chronic illness. I have Functional Neurological Disorder (FND), Postural Orthostatic Tachycardia Syndrome (POTS), and Gastroparesis, which I’ve been living with for four, two, and one year(s), respectively. Here’s a little insight into my life with chronic illness. Question:  If you were not born with your condition, what do you miss the most from before you had it? What do you grieve from prior? What’s one thing you were able to do before that you are unable to do now? Amanda’s Answer:  I miss being able to go out with friends without having to plan everything beforehand. Now, it’s hard to do anything or go anywhere without making arrangements in advance. Spontaneity used to be something I never thought twice about, but now it takes energy and preparation to even consider leaving the house. Question:  What are the main symptoms you experience? Amanda’s Answer:  I experience nausea, fatigue, brain fog, abdominal pain, fainting, and pre-syncope, which can make everyday tasks difficult. I also struggle with headaches, vision issues, joint pain, nerve pain, and dizziness. On top of that, my Functional Neurological Disorder causes seizures and cataplexy, which can be unpredictable and add an extra layer of difficulty to navigating daily life. Question:  How does your condition affect your daily life and school? Amanda’s Answer:  I miss a lot of school because of constant doctor’s appointments and long hospitalizations. I missed so much of my junior year that I had to repeat it, which was a difficult adjustment. Even on days when I do make it to school, I often don’t make it through the whole day without needing to go home early. It’s frustrating to feel like I’m always falling behind, no matter how hard I try to keep up. Question:  What are the toughest parts about living with this condition? Be as specific as possible! Amanda’s Answer:  The toughest part is the hospital stays. At this point, I’ve grown accustomed to them, but that doesn’t make them any less draining, both physically and mentally. Living with Functional Neurological Disorder is especially difficult because of the fear of having a seizure or cataplexy attack in public. It makes me feel like I have to "hide" or be extra cautious, which can be really isolating. Question:  What tips or strategies have helped you manage your condition? Amanda’s Answer:  Building a strong support system has been one of the most important things for me. At first, I was embarrassed to talk about my condition with anyone besides my doctors, but over time, I’ve found a group of friends who genuinely care and want to learn about what I go through. Having people who understand and support me has made a huge difference. Question:  What kind of support (from friends, family, or others) has been most helpful? Amanda’s Answer:  When my friends visit me in the hospital, it makes me feel so loved and cared for. After years of medical gaslighting and having doctors dismiss my symptoms, it means everything to have people in my life who truly believe me and help me advocate for myself. Question:  What’s one thing you wish people understood about living with a chronic condition? Amanda’s Answer:  Just because you have a chronic illness doesn’t mean you can’t do the things you love. Some days are harder than others, but that doesn’t mean you can’t enjoy life. It’s all about adapting and finding ways to make things work, even if it looks a little different than before. Learn from our community and share your story today!

Hi! My name is Finley Sells. I’m 19 years old, and I’m currently a social work major at my university. Studying social work has given me a deep appreciation for advocacy and support systems, both of which are incredibly important in my life. I also live with several chronic health conditions, including Chronic Inflammatory Demyelinating Polyneuropathy (CIDP), Hypermobile Ehlers-Danlos Syndrome (hEDS), Postural Orthostatic Tachycardia Syndrome (POTS), Gastroparesis (GP), and Amplified Musculoskeletal Pain Syndrome (AMPS). Here’s a glimpse into my life with chronic illness. Question:  If you were not born with your condition, what do you miss the most from before you had it? What do you grieve from prior? What’s one thing you were able to do before that you are unable to do now? Finley’s Answer:  I really miss being able to dance. Ballet was a huge passion of mine, and I only had one year on pointe before I got sick. It was something I had worked so hard for, and losing it felt like losing a piece of myself. There’s something so freeing about movement, and I grieve the ability to express myself through dance without worrying about pain, fatigue, or balance issues. It’s one of the biggest things my condition has taken from me. Question:  What are the main symptoms you experience? Finley’s Answer:  My symptoms vary from day to day, but some of the most persistent ones include nausea, fatigue, and brain fog, which make it difficult to get through daily tasks. Abdominal pain is a constant struggle, and I also experience dizziness, fainting, and pre-syncope episodes that impact my ability to move around safely. In addition, I deal with headaches, vision issues, joint pain, and nerve pain, which all contribute to the overall challenges of managing my conditions. Each symptom on its own is difficult, but together, they create a daily battle that requires constant adaptation. Question:  How does your condition affect your daily life and school? Finley’s Answer:  Managing school while dealing with chronic illness is incredibly challenging, especially because I spend a lot of time in the hospital. Missing classes and falling behind can be stressful, and catching up takes extra effort when I’m already dealing with fatigue and brain fog. My feeding tube and medications also take up a significant portion of my day, making time management even more difficult. On top of that, using a wheelchair means I have to factor in extra time to get places, as accessibility isn’t always straightforward. Despite these obstacles, I do my best to stay on top of my studies and adapt to the circumstances as they come. Question:  What are the toughest parts about living with this condition? Be as specific as possible! Finley’s Answer:  One of the hardest things is keeping up with people, both socially and physically. Fatigue makes it difficult to be as present and engaged as I’d like to be, and spending so much time in the hospital can feel isolating. It takes a toll on my mental health to constantly be navigating medical appointments, treatments, and the unpredictability of my condition. There’s also the emotional weight of knowing that life doesn’t pause for me—I have to work twice as hard to keep up with school, friendships, and everyday responsibilities, even when my body is making it nearly impossible. Question:  What tips or strategies have helped you manage your condition?  Finley’s Answer:  Over time, I’ve learned that small adjustments can make a big difference in my daily life. One of the most helpful things has been learning how to properly maintain my wheelchair so that I can use it as comfortably and efficiently as possible. The disability community has been a great resource for tips and tricks on everything from chair upkeep to mobility strategies. Another game-changer for me has been discovering tubie pads, which have made managing my feeding tube much more comfortable. Finding tools that make everyday tasks easier has been essential in navigating life with chronic illness. Question:  What kind of support (from friends, family, or others) has been most helpful? Finley’s Answer:  The support from my friends has been incredibly meaningful. The people in my life who are flexible with plans, who don’t mind adjusting things to accommodate my needs, and who step in when I need help—whether that means assisting me after I pass out, getting me to the hospital, or simply being there to talk—have made such a difference. Chronic illness can feel isolating, but having people who genuinely care and show up for me reminds me that I’m not alone in this. Question:  What’s one thing you wish people understood about living with a chronic condition? Finley’s Answer:  I wish people understood that chronic illness doesn’t take a break. It’s something I live with 24/7, even on the days when I might look "fine." Just because I have moments where I seem okay doesn’t mean I’m not in pain, exhausted, or struggling beneath the surface. It’s a constant reality, and while I don’t expect people to fully understand, a little empathy and awareness go a long way. You are never alone in how you feel. Reach out to us today!

Hi! My name is Izzy. I’m someone who loves to stay active, and I used to spend a lot of time at the gym, playing with my three dogs, and going to rodeos. However, life hasn’t been quite the same since I was diagnosed with Postural Orthostatic Tachycardia Syndrome (POTS) three years ago, as well as Non-Epileptic Seizures (PNES) for the past six months, and Ehlers-Danlos Syndrome (EDS). Living with these chronic conditions has altered my daily life in ways I never imagined, but I’ve learned to adapt and push forward. Here’s a glimpse into my life with chronic illness. Question:  If you were not born with your condition, what do you miss the most from before you had it? What do you grieve from prior? What’s one thing you were able to do before that you are unable to do now? Izzy’s Answer:  Before I developed these conditions, I could play sports without having to worry about whether I’d faint or have a seizure. I miss being able to go out with my friends and not constantly having to check in with myself, wondering how I’m feeling or whether I’m able to push through. I used to be able to do things on a whim without considering my health—things like going to school or hanging out with friends were easy and spontaneous. Now, I have to think about how my body will react and whether I’m physically up to it. It's a big change, and I grieve the loss of that freedom. Question:  What are the main symptoms you experience? Izzy’s Answer:  I experience a variety of symptoms, including nausea, extreme fatigue, brain fog, abdominal pain, fainting and pre-syncope, headaches, vision issues, joint pain, nerve pain, and dizziness. On top of these, I also experience seizures, which are a huge challenge. Managing these symptoms on a daily basis is exhausting, and it’s hard to predict how I’ll feel from one moment to the next. Question:  How does your condition affect your daily life and school? Izzy’s Answer:  My condition has completely changed the way I approach my day-to-day life. I am no longer able to attend school in person, and I’ve had to switch to homeschooling. It’s been really isolating not being able to see my friends or engage with others at school. I’ve also had to miss out on a lot of things that I used to enjoy, like going to social events or participating in activities. My life revolves around managing my symptoms, and it feels like I’m constantly trying to figure out how to balance rest and activity. Question:  What are the toughest parts about living with this condition? Be as specific as possible! Izzy’s Answer:  The toughest part is definitely dealing with the flare-ups and constant symptoms. On some days, it feels like I’m fighting my own body, and it’s really frustrating not knowing how I’ll feel from one moment to the next. There’s also a lot of uncertainty about what I can and can’t do—one day I might feel okay, and the next I can barely get out of bed. It’s emotionally draining, especially when it feels like my body is constantly betraying me. Question:  What tips or strategies have helped you manage your condition? Izzy’s Answer:  One of the biggest strategies that’s helped me manage my condition is staying active within my limits. I still go to the gym and do what I can, but I’ve had to learn to listen to my body and take rest days when needed. Pacing myself is key—knowing when to rest and when to push myself a little is something I’ve had to get better at. I also monitor how I’m feeling throughout the day, checking in with myself so I don’t overdo it. Question:  What kind of support (from friends, family, or others) has been most helpful? Izzy’s Answer:  My family has been my biggest support system. They’ve been there for me in ways that I never expected, and it’s comforting to know they have my back no matter what. They’ve helped me navigate the ups and downs of my condition and have been so understanding when I need to rest or cancel plans. It’s been really helpful knowing I have a solid support system in place that I can rely on. Question:  What’s one thing you wish people understood about living with a chronic condition? Izzy’s Answer:  One thing I wish people understood is that we don’t get to choose when we have bad days or when we physically can’t get out of bed. It’s not about “faking it” or trying to get attention—it’s about the reality of living with a chronic condition that can flare up at any time. It’s frustrating when others don’t see the struggle or think that we’re just being lazy. We are doing our best, and sometimes that’s all we can do. You are never alone in your health journey. Reach out to our community today!

Hi! My name is Sarah Morris. I am currently studying to become a nurse and I also have four guinea pigs! I live my life with gastroparesis and digestive tract paralysis. Here’s some insight into my life! Question:  What chronic health condition(s) do you have, and how long have you had it?  Sarah’s Answer: The main ones that impact me are gastroparesis and digestive tract paralysis, which I’ve been living with for 11 years. Question: If you were not born with your condition what do you miss the most from before you had it? What do you grieve from prior? What's one thing you were able to do before that you are unable to do now? Sarah’s Answer: I miss being able to do everyday activities—things like going out, visiting the mall, attending school, working, and even basic tasks like doing laundry. These are things I used to take for granted, but as my health has limited my ability to do them, I’ve come to realize how much they contributed to my sense of independence and routine. Question: What are the main symptoms you experience? Sarah’s Answer: The main symptoms I experience are nausea, vomiting, presyncope, and fainting, along with abdominal pain, dizziness, heart palpitations, arrhythmias, and fatigue.  Question:  How does your condition affect your daily life and school? Sarah’s Answer: Due to frequent hospitalizations and my overall health, I  haven’t been able to attend school in the traditional sense for quite some time. When I’m well enough, I do go, but that’s typically only a couple of days a month. The rest of the time, I try to keep up with my work remotely and do as much as I can from home. Most days, I’m sedentary, spending the majority of my time either in bed or on the couch. I’ve been making an effort to get out and do more, but my daily symptoms often make even the simplest activities difficult to manage. Question: What are the toughest parts about living with this condition?  Be as specific as possible! Sarah’s Answer: I believe the most challenging aspect of living with digestive tract paralysis is the mistreatment I’ve experienced from medical professionals. Because this condition is relatively rare, many doctors are unfamiliar with it, leading to poor treatment and harsh judgments. Despite numerous tests confirming a physical issue, it's not uncommon for doctors to dismiss my symptoms as psychosomatic or accuse me of being attention-seeking, often suggesting that it's all in my head.  These biases have lead to serious medical neglect and mistreatment, making an already challenging situation even worse.   Question:  What tips or strategies have helped you manage your condition? Sarah’s Answer: Finding things that help alleviate symptoms has been key for me, whether it’s medications, non-pharmacologic interventions like heat or ice packs, or even simple distractions when I’m not feeling well. One of the most helpful strategies is reminding myself that what I’m feeling in the moment is temporary and that I won’t always feel this way.  Question: What kind of support (from friends, family, or others) has been most helpful?   Sarah’s Answer:  Connecting with other people who are chronically ill has been incredibly helpful for me. It has provided a sense of community in an experience that often feels isolating, and I’ve been fortunate to connect with others who understand what I’m going through and can share helpful tips. It’s also been valuable when my family and friends acknowledge my physical limitations and respect them, while still finding ways to include me. I’m lucky to have friends who understand that, often, all I can do is rest at home. They’ve adapted by changing plans, choosing to spend time at my place and doing something low-key, like watching a movie, instead of going out. Question: What’s one thing you wish people understood about living with a chronic condition?  Sarah’s Answer: I wish more people understood how unpredictable my condition can be. I might be able to go to school or work one day, but end up bedridden or in the hospital the next. It’s hard to pretend everything is fine when I return to school or work, as if I haven’t been struggling. One day, I might be able to walk around a bit, and the next, I need a wheelchair. I often worry that people will see me doing better and assume I’m cured, not realizing that just because I look okay for a few hours or can do a little more, it doesn't mean I’m not still suffering. My appearance often doesn’t reflect how I’m truly feeling. You are never alone in how you feel. Join our community today!

Hi! My name is Liliann Greene. I’m 22 years old, and I’ve been skydiving! Above is a photo of my dog, Basil! I live with cyclical vomiting syndrome and gastroparesis, two conditions that have shaped my daily experiences in ways I never could have imagined. Chronic illness isn’t just a part of my life—it influences everything, from the way I eat to how I navigate relationships, school, and the future. Here’s my story! Question: If you were not born with your condition, what do you miss the most from before you had it? What do you grieve from prior? What’s one thing you were able to do before that you are unable to do now? Liliann’s Answer:  The thing I miss the most is having the energy to fully engage with life without constantly worrying about my body’s limits. Before my condition worsened, I never had to think about whether I could keep food down, if I’d have enough strength to get through the day, or if dizziness would take me out at the worst possible moment. Now, everything requires careful planning—when to eat, how to rest, when to push through, and when to stop. I grieve the simplicity of just being able to exist without my health constantly dictating my choices. There are so many moments where I feel like I’m watching life happen around me rather than fully participating in it, and that’s one of the hardest parts of losing the ability to just be without compromise. Question: What are the main symptoms you experience? Liliann’s Answer:  My symptoms are unpredictable and affect nearly every part of my body. The most constant one is nausea—it’s always there, a background noise in my life that never fully goes away. Fatigue is another major struggle, making even small tasks feel exhausting. Brain fog makes it difficult to concentrate, while abdominal pain adds another layer of discomfort. I also experience frequent fainting and pre-syncope, which means I have to be cautious about where and how I move. Headaches, vision issues, joint pain, nerve pain, and dizziness are all part of the package, too. Each day brings a different combination of these symptoms, and I never know exactly what to expect when I wake up in the morning. Question:  How does your condition affect your daily life and school? Liliann’s Answer:  My condition influences almost every decision I make throughout the day. Nausea is a constant battle, which makes eating a complicated process. No matter what, I know that if I eat, I’ll likely throw up afterward, so I have to time meals carefully. This makes things like going out with friends, attending classes, or simply functioning in public much harder. Eating before leaving the house is risky, and eating while out is often out of the question. On top of that, throwing up at school is exhausting and embarrassing—it’s hard to focus on assignments and lectures when my body is actively working against me. The mental load of managing my symptoms while trying to stay on top of schoolwork is overwhelming, and some days, it feels like an impossible balancing act. Question: What are the toughest parts about living with this condition? Be as specific as possible! Liliann’s Answer:  The toughest part is how inconvenient and unpredictable everything is. I can never just go about my day like everyone else—I have to constantly account for my symptoms, adjust my plans, and prepare for worst-case scenarios. The nausea alone is debilitating, but on top of that, my eating schedule is completely thrown off, and I’ve lost a significant amount of weight because of it. Fainting is another huge issue. It’s scary knowing that at any moment, I could lose consciousness, and I constantly worry about hitting my head or injuring myself when I fall. If I faint in public, I’m left completely vulnerable, which is not only dangerous but also humiliating. Chronic illness takes away a sense of security in your own body, and that loss of control is one of the hardest things to cope with. Question:  What tips or strategies have helped you manage your condition? Liliann’s Answer:  Managing my condition is an ongoing process, and what works one day might not work the next. One thing that has helped is meditation—it gives me a mental break from the constant stress of being sick. Deep breathing is often recommended for my condition, but personally, I haven’t found it to be very effective. That being said, I still try to incorporate relaxation techniques into my routine because even if they don’t directly help my symptoms, they make it easier to cope with the emotional toll of chronic illness. Some days, it’s less about finding solutions and more about just surviving the best I can. Question:  What kind of support (from friends, family, or others) has been most helpful? Liliann’s Answer:  My boyfriend is my biggest source of support, and I don’t know what I’d do without him. He always catches me when I faint and never makes me feel like a burden. Instead of seeing my illness as an inconvenience, he genuinely loves taking care of me, and I’m so grateful for that. Chronic illness can be incredibly isolating, but having even one person who truly understands and is there for you makes all the difference. The people who stick around, who don’t get frustrated when you cancel plans or need extra help, are the ones who make this journey easier to bear. Question:  What’s one thing you wish people understood about living with a chronic condition? Liliann’s Answer:  I wish people truly understood just how life-changing chronic illness is. It’s not just about being sick—it’s about how it reshapes every single aspect of your life. Things that used to be simple suddenly require careful planning and energy that I don’t always have. Every decision, every outing, every meal comes with extra considerations. People often assume that chronic illness is just a rough patch or something you can push through with enough effort, but that’s not how it works. This isn’t temporary; it’s my reality. At the same time, I also wish people wouldn’t treat me like I’m fragile or incapable. Yes, my life has changed, and yes, I have limitations, but that doesn’t mean I’m not strong or capable. A little understanding and respect go a long way. You are never alone in how you feel. Join our community today!

Hi! My name is Hannah Schneider. I’m 17 years old, and I spent 11 years doing gymnastics. It was a huge part of my life, and I loved the discipline and movement it gave me. Now, I live with several chronic health conditions, including Postural Orthostatic Tachycardia Syndrome (POTS), Median Arcuate Ligament Syndrome (MALS), Gastroparesis (GP), Hypermobile Ehlers-Danlos Syndrome (hEDS), and I am currently being treated for Mast Cell Activation Syndrome (MCAS). Here’s what my life looks like! Question:  If you were not born with your condition, what do you miss the most from before you had it? What do you grieve from prior? What’s one thing you were able to do before that you are unable to do now? Hannah’s Answer: I miss eating without thinking twice about it. So many social experiences revolve around food, and I never realized how much I took it for granted until it became a struggle. I also miss having the energy to do things without constantly having to plan around my symptoms. There’s so much that my friends can do without hesitation—going out for spontaneous trips, staying up late, being active—while I have to consider whether my body can handle it that day. That loss of freedom has been one of the hardest things to accept. Question:  What are the main symptoms you experience? Hannah’s Answer: My conditions affect multiple systems in my body, so the symptoms can be overwhelming. I experience chronic nausea, fatigue, and brain fog, which makes even the simplest tasks exhausting. Abdominal pain is a daily reality, and I often deal with dizziness, fainting, and pre-syncope episodes that make it difficult to feel safe in certain environments. I also struggle with headaches, vision issues, joint pain, and nerve pain, all of which fluctuate in severity. It’s a constant balancing act, trying to manage all these symptoms while still living my life as fully as I can. Question:  How does your condition affect your daily life and school? Hannah’s Answer: I attend school full-time, but I have an Individualized Education Plan (IEP) that allows me to leave whenever I need to, and those absences are excused. This accommodation has been essential because my symptoms can become unmanageable at any time. Some days, I can push through and stay for a full day, but on others, I have to go home early because my body just can’t handle it. School itself is also harder because of the brain fog and fatigue, which make it difficult to retain information and stay engaged. It takes so much extra effort to keep up, but I do my best to make it work. Question:  What are the toughest parts about living with this condition? Be as specific as possible! Hannah’s Answer: One of the toughest parts is constantly having to find new ways to adapt to this life. Nothing is ever straightforward—I’m always adjusting, making accommodations, and figuring out how to make things work despite my symptoms. On top of that, there’s the pressure to appear okay, even when I’m struggling. People don’t see the full extent of what I go through, and I don’t always want to explain it, so I end up pretending I’m fine when I’m really not. It’s exhausting to keep up that front, but sometimes it feels easier than trying to make others understand. Question:  What tips or strategies have helped you manage your condition? Hannah’s Answer: My doctors have worked incredibly hard to find medications that help manage my symptoms, and I’m extremely grateful for that. Without those treatments, I don’t think I’d be where I am today. Alongside medication, I also do physiotherapy and other strength-building exercises to help my body function as well as possible. It’s a long process, and progress isn’t always linear, but every small improvement makes a difference. Finding a balance between medical treatments and lifestyle adaptations has been key. Question:  What kind of support (from friends, family, or others) has been most helpful? Hannah’s Answer: My parents have been my biggest supporters throughout this journey. They’ve stuck by me through everything, advocating for me, taking care of me, and making sure I have what I need. My best friends have also been amazing. When I was in the hospital, they visited me and even surprised me, making sure I never felt alone. Having people who genuinely care and show up for you in the hardest moments makes a world of difference. Question:  What’s one thing you wish people understood about living with a chronic condition? Hannah’s Answer: I wish people understood that this isn’t easy. Every single day is a struggle, even if you can’t see it. Just because I’m functioning doesn’t mean I’m not in pain or exhausted beyond belief. Chronic illness is an invisible battle, and while I don’t expect people to fully understand what it’s like, a little empathy goes a long way. It’s not about pity—it’s about recognizing that life with a chronic condition takes an incredible amount of strength and perseverance. Join our community today!

Hi, my name is Justine. I’ve struggled with dysautonomia my entire life. When I turned 15, these issues started to become worse as I was diagnosed with gastroparesis. I became very ill, incredibly fast. It started to affect all aspects of my life; school, sports, and socializing. Over the past 2 years, I have struggled the most with malnutrition, nausea, syncope, abdominal pain, and fatigue. While managing my school life with chronic health issues, I’ve learned that one of the most important keys is having an outlet and a connection. More specifically, the ability to release tension and find people who are in similar situations to me. Meeting people who have lived through the medical world as a patient and who still exist outside the hospital walls is extraordinary. This inspired the creation of Infinite Possibilities. My goal is to help, learn, share, and converse with other people like me. With Infinite Possibilities, that goal becomes possible.