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Hi! My name is Isabelle Lee. I’m seventeen years old and I love jazz music and cats. Above is a photo of my cat, Peanut. I live my life with Ehlers-Danlos Syndrome. 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? Isabelle’s Answer: I was born with Ehlers-Danlos Syndrome, so my life coinciding with an invisible disability is my normal. There aren’t activities that I miss necessarily as I’ve never tried them, but there are certainly several things that I do miss out on. Having a connective tissues disorder affects my entire body. It prevents me from participating in many sports and physically intensive activities. This often resulted in feeling left out or isolated from my peers when I was younger. Pro tip: find other stuff you love! It’s much easier with a support group of friends in something you enjoy.  Question: What are the main symptoms that you experience? Isabelle’s Answer: Ehlers-Danlos affects all of my connective tissue, this results in a constellation of symptoms across my body. Some of the most prominent ones include fatigue, brain fog, abdominal pain, headaches, joint pain, and frequent dislocations/muscle spasms from accommodations that I have to do in order to function properly. Question: How does your condition affect your daily life and school? Isabelle’s Answer: I live with minor to moderate pain. It’s just something that’s constantly lingering in the back of my head. I am always aware of it and looking out for pain management. It takes up a moderate portion of my brain power as I am constantly thinking about it. Having to be my own doctor and continually monitor myself and my body is not easy. The mental logistics of figuring out just how much medicine to take that it dims my pain but not my ability to be present. Both stress and medication take a toll on my ability to learn properly.  Question: What are the toughest parts about living with this condition? Be as specific as possible! Isabelle’s Answer:  One of the toughest aspects is the constant fatigue from always having to accommodate my needs. This isn’t just about the mental energy required to adapt—it also includes the involuntary responses my body goes through just to function. My body is constantly working harder than it should, even for the simplest tasks, which leaves me feeling drained both physically and mentally. It’s an unrelenting cycle that can feel overwhelming at times. However, it’s definitely made me stronger as a person, and it gets so much easier after a year or two.  Question: What tips or strategies have helped you manage your condition? Isabelle’s Answer: One of the strategies that’s really helped is practicing self-reward. You should try it too! Whenever I do something hard or challenging for me, I make it a point to treat myself—it’s a simple way to stay motivated and acknowledge my efforts. Taking time for self-care is also crucial, whether it’s rest, relaxation, or doing something I enjoy. Interestingly, oregano oil pills have also been surprisingly effective for me—they’ve made a noticeable difference in managing my symptoms.  Question:  What’s one thing you wish people understood about living with a chronic condition? Isabelle’s Answer: I wish people understood that living with a chronic condition impacts nearly every aspect of our lives, from the way we plan our days to how we interact with others and even how we perceive ourselves. It’s not just about managing symptoms—it’s about adapting constantly to a body that doesn’t always cooperate. This isn’t an excuse for anything, but it does influence our behaviors, energy levels, and what we can realistically handle at any given time. At the same time, I wish people wouldn’t assume that we’re fragile or incapable. While we appreciate support and understanding, it’s also important to recognize that we’re stronger and more resilient than we might appear. Treating us like we’re made of glass can feel isolating and patronizing. Instead, acknowledging both our challenges and our perseverance goes a long way in creating genuine connections. Thanks for listening :) You are never alone in how you feel! Join our community today!

Hey, my name is Georgia Vlahos. I’m 16 years old and I love to work with children with learning disabilities and/or special needs. I was also a full-time dancer. I live my life with Dysautonomia of Adolescence.  Here’s a look into my life! Question:  If you weren’t born with your condition, what do you miss the most from before? What do you grieve from your prior experience? And what’s one thing you were able to do before that you’re no longer able to do? Georgia’s Response:  I miss being able to stand up without the fear of passing out, as well as the freedom to live a normal life. It’s difficult to come to terms with the loss of these simple, everyday experiences. Question:  What are the main symptoms you experience? Georgia’s Response:  The primary symptoms I experience include nausea, brain fog, and chronic fatigue, which often make it difficult to focus or get through daily tasks. I also struggle with fainting and frequent episodes of pre-syncope, where I feel like I’m about to pass out. Temperature dysregulation is another challenge, as I often feel unusually hot or cold without warning. Blood pooling, particularly in my legs, leads to discomfort and can worsen dizziness and faintness. Other symptoms include persistent headaches, episodes of lightheadedness, and vision problems like blurred or tunnel vision, which can be disorienting. I also deal with gastrointestinal issues, muscle weakness, and shakiness. On top of that, I experience heart palpitations, which can be unsettling and add to the general sense of fatigue and discomfort. These symptoms fluctuate in severity, but they significantly impact my ability to manage daily activities. Question:  How does your condition affect your daily life and school? Georgia’s Response:  My condition makes it difficult to focus and see clearly, especially with the added challenges of vertigo and anemia. I experience constant brain fog, which causes me to forget things frequently, making it hard to keep up with lessons and assignments. I often have to leave class due to my symptoms, which disrupts my learning and makes staying on track even more challenging. Question:  What are the toughest parts about living with this condition? Be as specific as possible! Georgia’s Response:  One of the hardest aspects is not being able to keep up with people who are fully healthy and capable of doing simple, everyday tasks that, for me, require all my energy. I get exhausted very easily—sometimes, even getting out of bed drains me completely. I often have to cancel plans or say I’m busy when the truth is I’m just too weak to go out. On days when I do feel okay, I get excited and energized, which can make me feel almost “normal”—but then I inevitably crash, which is physically exhausting and mentally discouraging. Beyond the physical toll, the condition is mentally draining. Some days, I feel completely worthless and overwhelmed, and I can’t help but wonder, why me?  It’s a constant battle to accept my limitations while wanting so much to do the things others do with ease. Question:  What tips or strategies have helped you manage your condition? Georgia’s Response:  Staying hydrated with plenty of water and electrolytes has been essential, as well as incorporating more salt into my diet to help with blood pressure regulation. Maintaining a stable, balanced diet and cutting down on junk food (which is definitely a challenge) has also helped, as these foods tend to make me crash. Talking to a therapist and connecting with a support group of others with the same condition has been invaluable; it’s comforting to find people who truly understand this experience. Another key strategy is recognizing that it’s okay to have bad days and that self-care—both physically and mentally—is crucial. Question:  What kind of support (from friends, family, or others) has been most helpful? Georgia’s Response: The most helpful support has been from those who listen and show understanding, as well as those who allow me to take the time I need on days when I simply can’t function. I’m also incredibly grateful for the BC Children’s Hospital Dysautonomia Clinic, which contacts me every week to check in and provide advice. Having a strong support system around me makes a world of difference, and I deeply appreciate it. Question: What’s one thing you wish people understood about living with a chronic condition?  Georgia’s Response: I wish people understood that just because someone looks okay and appears healthy, it doesn’t mean they aren’t facing significant challenges. Chronic conditions often have invisible symptoms that affect a person’s physical, mental, and emotional well-being. It’s easy to assume someone is fine based on their outward appearance, but many of us work hard to mask our struggles to avoid being treated differently or misunderstood. Living with a chronic condition is a constant battle, even when it’s not immediately visible to others. You are not alone in your chronic illness! Sign up for our community today to learn about more of our members journeys!

Hi, my name is Sharlotte Friedman. I’m seventeen years old and I love to crochet anything that I can imagine. I also happen to live with two invisible disabilities; congenital sensorineural moderate hearing loss and hypermobility. Here’s a view of what my life is like! Question:  If you weren’t born with your condition, what do you miss the most from before? What do you grieve from your prior experience? And what’s one thing you were able to do before that you’re no longer able to do? Sharlotte’s Response: I grieve not having to constantly calculate how much standing and movement each situation will demand. Standing still tends to cause more discomfort than walking, and at times, all movement—or even remaining still—results in knee pain. Regarding my hearing, while I was born with the impairment, I've become increasingly aware of its impact over time. I deeply miss the ease of following conversations without the intense fatigue it now brings. Mentally, this strain has taken a significant toll; participating in conversations is exhausting, but not being part of them leads me to experience a strong sense of FOMO and imposter syndrome. Question:  What are the main symptoms you experience? Sharlotte’s Response: My primary symptoms include fatigue, joint pain, and a heightened sense of anxiety whenever there is even a slight change in how my ears feel. Question: How does your condition affect your daily life and school? Sharlotte’s Response:  I find it challenging to hear teachers and other students clearly, which makes it difficult for me to participate in conversations that seem effortless for others. This is particularly painful, as it affects my social interactions with friends. Additionally, I frequently have to navigate misunderstandings with teachers, who may forget or not fully understand the accommodations I need. Certain classrooms, such as the art room, are practically "dead zones" for my hearing due to their design, which further complicates my ability to follow along. Question:  What are the toughest parts about living with this condition? Be as specific as possible! Sharlotte’s Response:  One of the hardest aspects is the lack of understanding from others, partly because my condition is uncommon. Since I was born with this hearing loss, it’s my “normal” hearing, so I struggle to explain it to others. I’m highly sensitive to certain sounds, and I can experience panic attacks from auditory overstimulation. But even though I can hear people speaking, I often have to ask them to repeat themselves multiple times or end up misunderstanding what they said. I try to make light of it by interpreting things humorously when I get it wrong—it helps people see the funny side, so they don’t treat me as if I’m clueless. Because I don’t “look disabled” or “look deaf,” people often forget, even my parents at times. Constantly reminding others that I genuinely can’t hear feels like I’m seeking attention, which is uncomfortable. I’ve had countless people respond to my requests to speak up by saying that they have bad ears too, or they “probably have the same thing” because they sometimes miss what people say. But this isn’t a minor issue or something to joke about—it’s a part of me that I work extremely hard to manage just to appear “normal” and keep up with daily tasks. People often fail to understand that hidden disabilities are real and aren’t just “self-diagnosed” trends. I experience fatigue after social situations, not because I’m antisocial—in fact, it’s the opposite. I love being social, but I put all my energy into hiding my differences and avoiding being seen as annoying, holding others back, or being “different” in a way that could set me apart. Question:  What tips or strategies have helped you manage your condition? Sharlotte’s Response:  Self-advocacy has been essential. Unfortunately, I didn’t have consistent support from my schools from preschool through mid-grade 11, so I had to learn how to advocate for myself. Self-advocacy teaches you how to approach situations with teachers or professors, how to discuss your needs in a mature way, and how to work collaboratively to find solutions. Many teachers have commented that my habit of proactively checking in with them—even when they already have summaries of my accommodations—is both useful and appreciated. Question:  What kind of support (from friends, family, or others) has been most helpful? Sharlotte’s Response:  The most helpful support has been when people simply “keep an ear out” for me. For example, when friends quietly recap parts of conversations I may have missed, it’s incredibly useful. It’s also a huge help when people make it clear whether they’re addressing me or not, so I don’t waste energy trying to follow along unnecessarily—my mom has been especially mindful of doing this. Additionally, the understanding from school staff regarding my sound sensitivity during tests has been a true blessing. I really appreciate the support from my school’s resource center! Question:  What’s one thing you wish people understood about living with a chronic condition? Sharlotte’s Response:  I wish people understood that I cannot just “listen harder!”  I’m often asked to do so as if that would solve everything, but it’s simply not possible, and it’s frustrating that this can be so hard for others to grasp. You are never alone! Join our community today for unconditional support!