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Insta: authormakaylaspencer College Dropout I started having symptoms in my freshman year of high school. I missed a lot of school and almost didn't graduate because of my illness. It was during my senior year of high school that I started writing again. Mainly during study hall when I had nothing else to do. Thankfully, due to my decent grades, I graduated on time and headed off to college in the fall after working as a server all summer. Everything was going smoothly at first. I attended class, did my homework, made friends, and got a taste of what it was like to be an adult. All was well, until late September/ early October when I ended up in the hospital due to a major flare-up. By then my doctor and I had guessed that I had POTS, but due to lack of a diagnosis, I was gaslit and belittled by the hospital staff, told I was fine, and sent back to campus. Then the October slide hit (for some reason POTS symptoms tend to get worse in October and last until spring) By this time, I decided to start using a wheelchair to get around, which helped a lot. I missed class frequently, either due to passing out or the automatic doors being broken. (My dorm didn't have them at all, which made it challenging to get in and out if no one was around.) My grades dropped dramatically, to the point where I faced an Academic Release due to my GPA being so low. I was miserable, both physically and mentally, and extremely stressed out. So, after finals and Christmas break, I decided to take a break in the spring and possibly come back in the fall. Around that same time, I quit my waitressing job because I was no longer capable of being on my feet for that long. Change of Plans As it turns out, COVID hit that spring and sent everyone home anyway. My mental health didn't get better during quarantine until I met my husband. We met online and met in person two weeks later. A few months into our relationship, I let him read what little of my story I had written. He loved it and asked if I planned on getting it published. I said I didn't think it was in the cards for me since it cost money and I was unemployed. He promised that he would help me get my book published because there was no point in finishing it if I wasn't going to share it with other people. Instead of going back to school in the fall, I ended up getting a job at my high school as an aftercare monitor and working on a manuscript. The job fit my needs well, as I didn't have to stand the entire time and it was only for three hours a day. That November, I got engaged and decided that going back to school just wasn't in the cards for me at that time. I finished the school year and let my boss know that I would not be returning for the following school year because I was getting married and moving three hours away. The summer flew by, and before we knew it the big day was here. I married the love of my life on a terribly humid, stormy day and became Mrs. Makayla Spencer. An Idea Is Born A few months after the wedding I finally had my suspicions confirmed. I have POTS. After six years of bouncing from doctor to doctor, being poked and jabbed, and told it was all in my head, I finally had a diagnosis. During those six years, I read countless books to try to escape mentally, but not a single one had chronic illness representation, especially in my favorite genre, fantasy. So, I decided to write one. After many rewrites and nearly ten years of making change after change, my manuscript is finally in the editing stage. I'm no longer using a wheelchair. (Thanks to my diagnosis I finally got the help I needed.) And I'm a stay-at-home wife and mother. I sincerely hope that my story provides comfort for those in a similar situation. Know that you are not alone and don't give up hope.

Chronic Illness + Disability Advocate. Hi, I'm Lacie LaJoie (Luh-Joy.) I am chronically ill, disabled, and bilaterally blind. I was born with Optic Nerve Hypoplasia (ONH), which is a rare condition that results in blindness, as well as other health complications- such as adrenal crisis. I am diagnosed with Dysautonomia (POTS), Hypertension, GERD, and comorbidities that follow (arrhythmia, MCAS, etc.) As well as mental health disorders (OCD, anxiety, depression, etc.) I have spent my entire life since birth with disabilities, but it wasn't until 2022 that I really opened up about my realities and felt free of shame, embarrassment, and fear. If I could teach others about my condition, I would mainly focus on the reality of Dysautonomia. It is a debilitating illness that consumes the entire body, with a wide range of symptoms. You can find more information at Dysautonomia.org ! I would also want others to be educated about Optic Nerve Hypoplasia. For example, blindness ≠ blackness. Blindness is simply a spectrum, meaning just because someone is blind doesn't mean that they only see "nothingness." Only a small percentage of those who are blind experience or "see" total nothingness. As for myself, I experience nothingness in my left eye, and only central without peripheral vision in my right eye. Overall, chronic illness changed my life in a paradoxical manner. It is hard, debilitating, and exhausting. I truly did not know if I would ever survive living with the challenges I faced. Having online support has helped shift that feeling of despair. I have now interacted with thousands in the chronic illness community through my Instagram (@lacielajoie) and continue to connect with people daily. Although it's incredibly hard, and I would do anything to change my outcome, being able to be an advocate for myself + others has uplifted my life in many ways!! Life Beyond Illness. My life beyond illness consists of living in the Southern United States. My family consists of my partner of 7 years, our sweet furbaby Ella (she is 5), and our baby boy-- whom we will be welcoming in just a few short weeks. My hobbies include anything that allows me to be a homebody! I also have a bakery business called Lacie's Loft that was established in 2022. At this point in my life, I am most excited for my new journey into motherhood, navigating chronic illness as a first-time mom, with the most amazing partner by my side to help! Chronic Illness Affirmations + Reflection. • You are allowed to mourn the loss of your body. • How others react to your illness(es) is not a reflection of your self-worth. • You are not a burden to those around you. • Rest doesn't always have to come with reason. • Mobility aids are for our comfort, not for others' approval. Reflection questions: • Am I getting plenty of rest? • Am I setting healthy boundaries? • Have I shown myself compassion? • Have I taken the time to do something that I enjoy? • Is there anything I am holding onto that I need to let go of? • Are my choices aligning with my health? "My voice is loud for those who have been silenced." -Lacie LaJoie "

I was born on September 21st, 2006 in Kentucky. I was born with a rare genetic condition called the Pierre Robin sequence. I was also born with asthma, autism, and ADHD. I was diagnosed with ADHD and autism as a child.  My autism and Pierre Robin syndrome went largely ignored throughout my academic life, and therefore I relate to undiagnosed/late-diagnosed individuals. Before I got my jaw surgery, I couldn’t drink from a water fountain and I was written up for “misuse” of school property.  A few years ago, I was diagnosed with PTSD, severe anxiety, and depression. I have had 26 surgeries, and the last two I had should be my last for a while. I’m also partially deaf, I can hear without my hearing aids, but not everything. For example, I can’t hear whispers, but I can hear it when people talk to me. I can't hear thunder, and I can only hear rain if it’s slamming down. I do wear glasses, and I can see but my vision is poor. I can’t read well because of my sight issues, and I legally need my glasses to drive.  I also have developmental delays and some coordination difficulties. When I say I have coordination delays, think about monkey bars, and all the coordination involved with that skill. That’s something I struggle with. Although this is often associated with Pierre Robin syndrome and autism, it doesn’t technically have a diagnosis, and in that way, I’m kind of a medical myth. That said, I am teaching myself how to swim, ride a bike, and do the monkey bars. I’m a medical mess!  I’ve been in many different forms of therapy. I began in feeding therapy because I needed a feeding tube as a baby. Currently, I’m only in trauma therapy. Over the years, I’ve had physical therapy, occupational therapy,  speech therapy, intensive physical therapy, and mental-health-related therapy.   I love Western things like old trucks, horses, animals, sunsets, sunrises, storms, and I especially love to play in the water. I also love swings and anything with movement.

Hi! I'm Sylwia Woch (Sissi Chiari). I'm 24 years old. I'm from Poland. I was born at 26 weeks gestation. I weighed only 950 grams. The doctors scolded me at the very beginning. They gave me no chance of survival. I was supposed to be a "plant", a "vegetable"... However, this did not happen. Let's go back to the beginning of my story. During the pregnancy, the doctors told my parents that they were expecting twins. Everything was going perfectly, until that fateful day, my mother's waters broke. The doctors thought they would be able to keep the pregnancy,  however, there was a hemorrhage and they had to quickly perform a C-section. It turned out that my twin was a one-and-a-half-kilogram muscle that was pressing on the left side of my body. When they wanted to pull it out, the doctor put his hand under it, and it came out on its own without any interference from a scalpel.  After I was born, my parents heard these terrible words: "Nothing will come of her... She will be just a lying plant, a vegetable..." However, this did not happen, because I was such a strong girl. On the first day after birth, I had already ripped the tubes from my nose and throat that helped me breathe. In my mother's chart, the doctors wrote that she gave birth naturally. And mine said that I was 10 pounds. After that, everything seemed to be fine, until two months later, on the day of my discharge from the hospital, My parents were informed that I was blind. I had retinopathy of prematurity, so I was transported to another hospital, where they saved my sight. Later, I returned home normally. When I turned a year old my parents were concerned by the fact that I was not sitting up, crawling, or walking on my own. They referred me for tests, such as an ultrasound, EEG, and the like, but the tests showed no changes in the brain. They suspected that I was suffering from Cerebral Palsy. However, after seeing the test results, they said they didn't know what I had and just pulled me under the aforementioned palsy. Later, during a hip examination, I was diagnosed with hip dysplasia. For which I had more than a dozen surgeries (I have plates, screws, and wires in my hips). Most of these I had between the ages of 3 and 7. I spent my childhood in hospitals. I had my first surgery to insert plates, wires, and screws at the age of 6. At that time I wore a cast from the waist down for 6 weeks, which, as it turned out, was misplaced, causing the bones in my left calf to be twisted and the toes in both feet to be crushed. A year later the doctors wanted to take them out of me and when they opened the wound it turned out that nothing had healed, so they closed it back up. After this operation after 7 years, my leg started to bother me again. We went to a professor, who referred me to another operation during which it turned out that the femur in my right leg began to rot. I was in danger of leg amputation. However, the doctors managed to save it. They cut off only 3 centimeters of my femur. Because of this, my right leg is shorter than my left. After this operation, I could not stand on my left leg. It turned out that the screw in the left leg was screwed in too far. As a result, there was damage to the nerve. I also had botulinum toxin injected under general anesthesia and the tendons in my groin, under my left knee, and in my feet were cut. After the penultimate surgery, I could not wake up. I fell into a coma for almost four days. I had several resuscitations and blood transfusions during an operation. After these, my heart became very weak and the doctors said that I couldn't have any more surgeries because I simply wouldn't survive them. On top of that, six years ago I was diagnosed with hypothyroidism. Which makes everything a little more difficult. And in between all this, I'm trying to live a normal life! A bit more about me: I trained professionally in wheelchair ballroom dancing for 2 years. I am currently on a break but would like to get back to it. In 2013, I trained Boccia professionally for 1 year (BC2). I like to read books, and I'm crazy about sports. I'm learning to play the piano, and I love art in every form. Insta: sissichiariofc

Meet Me! Hi! My name is Danielle, but on Instagram, I go by @chronically_nell (Nelly/Nell is what my family calls me). I’m 24, from NB, Canada, and I’ve been dynamically disabled since birth, living with multiple rare, hard-to-treat conditions. Navigating the healthcare system while managing rare illnesses has been an ongoing journey, full of unique challenges and unexpected turns. Here’s my story of living with congenital conditions and how it has shaped my life. My Conditions and Diagnoses I have BMP2 dysplasia spectrum disorder, spondylosis, fibromyalgia, reactive hypoglycemia, bile gastritis, esophageal dysphagia, pectus excavatum, taurodontism, congenital heart disease, suspected Reynaud’s, and severe scoliosis. With three failed surgeries, I am now in severe pain and debilitated. They also believe I have a connective tissue disorder but haven’t yet identified which one. Early Health Challenges My health issues started as soon as I was born. I was born with congenital heart disease that required open-heart surgery at 8 months to repair two holes in my heart. Doctors also noticed skeletal and chest wall abnormalities, which prompted a referral to genetic specialists. Living with BMP2 Dysplasia Spectrum Disorder Throughout my life, I was closely followed by specialists in genetics, orthopedics, cardiology, and rheumatology. They eventually diagnosed me with BMP2 Dysplasia Spectrum Disorder, a rare genetic condition. My geneticist explained that only 34 people worldwide are known to have it, although many more may have it undiagnosed due to milder symptoms or lack of access to genetic testing. Childhood Challenges with a Rare Disorder Living with rare conditions made childhood challenging. My BMP2 dysplasia heavily affected my skeletal system, causing issues in my heart, spine, joints, muscles, and digestive system. I faced joint problems, muscle weakness, large dental abnormalities, respiratory issues, limited mobility, chronic pain, and esophageal issues. Struggles to Keep Up While I tried to keep up with my peers, it was a constant struggle. I participated in sports and even took ballet classes, but I never quite matched the pace of others around me. In dance class, I watched my peers progress to higher levels while my fatigue and pain held me back. Eventually, I had to stop all sports activities. Physical Limitations and Pain Some days, I couldn’t even bend my knees from pain, and moving in certain ways felt like my joints were being dislocated. These limitations reminded me daily that my body was different and made physical activities a constant source of frustration. The Challenge of Finding Medical Care One of the hardest parts of living with rare conditions is the lack of proper medical care. Few doctors are familiar with my conditions, leaving me without treatment plans that address my unique needs. It often felt like I was educating my doctors, rather than receiving help. At 18, the children’s hospital never referred me to new doctors, leaving me feeling alone in the dark with no medical support. Scoliosis Diagnosis and Surgeries At 12, I was diagnosed with severe scoliosis, needing surgery for an 80-degree spinal curve. By high school, my pain worsened, but doctors didn’t X-ray my back until 2019, when they found that scoliosis had returned, along with spondylosis and two loose screws. In 2022, I had another surgery, but woke up in extreme pain, unable to move my leg. After two weeks, I was discharged without answers and left bedridden for seven months, as I couldn’t travel the three hours back to the hospital. Eventually, they discovered a screw was too tight, and a later surgery removed two screws, providing some relief. Despite two years of asking doctors, it took until recently to get an MRI, which showed another screw pressing against my spinal cord. I now finally got a referral to an adult orthopedic surgeon where I continue to wait for the next steps. Living with Extreme Pain and Limited Mobility Living with this extreme pain, I can’t sit up for more than two hours, and lying down is just as difficult. My mobility is severely limited, impacting even the simplest daily activities. GI Issues and a Long-Awaited Diagnosis My GI issues also went undiagnosed for six years until this year when a new specialist diagnosed me with bile gastritis and esophageal dysphagia. Swallowing is nearly impossible now, and eating has become my hardest daily task and as a result, I have developed reactive hypoglycemia. My energy has dropped significantly, and my day revolves around attempting to eat, sitting up for two hours, lying down for 40 minutes, and repeating this cycle. The Ongoing Struggle for Adequate Care The ongoing struggle to receive adequate care, especially for conditions that doctors don’t fully understand, has made my journey through the healthcare system incredibly difficult. Finding Support and Strength in Online Communities Living with multiple rare and complex conditions has shaped every part of my life. Despite these difficulties, one of the most uplifting parts of this journey has been finding online communities of people who share similar struggles. Connecting with others who truly understand what it’s like has been an amazing source of support and comfort, helping me navigate each day with a little more strength and hope. Raising Awareness for Rare Diseases By sharing my story, I hope to raise awareness of the unique needs of people living with rare diseases and highlight the critical gaps in the healthcare system. Navigating the world with rare illnesses isn’t easy, but it’s a reality that many like me must face every day.

My story Finally, I had an answer. After all those years of pain, of doubting myself and my body, I was sitting there being given a reason why. It wasn't an answer anyone would have wanted; it was confirmation that my life was going to be hard. Little did I know that it would turn out to be much harder than I ever thought possible. As a 21-year-old trainee teacher, after years of being dismissed by doctors, I was diagnosed with Crohn’s disease; a medical condition that almost claimed my life and left me with complex medical issues. A lifelong lover of art, I turned to creative makeup as a way to take my mind off the pain and anxiety caused by my condition. At my most vulnerable, during the night after a life-saving emergency surgery, I was physically abused by a doctor. Although the doctor was struck off from the profession I was left with a complex case of PTSD causing daily flashbacks and intense nightmares. Subsequent hospital stays were extremely difficult. As a way of coping and staying connected to the outside world while in the hospital I created my makeup social media channels under the name @slaywithsparkle, building a supportive community of like-minded creative disabled, and chronically ill people. As I continued through my 20s my mobility gradually declined due to another condition, related to my joints. I was also diagnosed with POTS, a condition that makes standing upright for any length of time dangerous. The combination of my conditions resulted in me needing to use a walking stick and wheelchair. Later, I medically retired from a job I loved - being a teacher. After this, I could have allowed my conditions and disability to make me despondent, but never one to shy away from a challenge, I decided to bedazzle my mobility aids and embrace them as tools to help me live life to the fullest. This wasn’t an easy process and is still something I’m working on every single day. I now use my time to help inspire others and raise awareness of life as a disabled person through my work as a content creator and inspirational speaker. Thank you for reading. ✨

How did you develop your confidence and self-esteem? The desire to understand confidence  came from a place of not wanting to feel insecure anymore. I have always been sensitive, an empath, and a long-time procrastinator, which led to a lot of anxiety and feeling different and disconnected. My journey to self-confidence came through a variety of different people and experiences, each validating my uniqueness and fostering self-acceptance and a desire to pursue my own path. A few tools that still provide ongoing support are adaptive yoga, therapy, spiritual practices, podcasts, and continuing education for my job as an occupational therapist. All of these strategies help me maintain balance and a sense of self-compassion as I navigate all that life brings.  Tell our readers about what you do, what you feel is most special or exciting about it, as well as anything else you’d like folks to know about the brand. Anything new? My background is in occupational therapy, and my passion is to invite everybody to have an emotional wellness conversation. I believe profound transformation happens when sensory strategies, breath, and movement help shift us out of our overthinking, overwhelmed minds and back into our bodies.  My work is grounded in a framework called the Energy Cycle, which captures a process of facilitating mind-body connection. I have also gained a unique set of skills to ensure inclusivity for those who are neurodivergent or have a physical disability and work to equip them to better connect with themselves through group classes and one-on-one sessions, along with educational workshops for parents and educators. I also believe that every person is an expert on their own life and experiences, so I prioritize listening and truly collaborating with clients based on their unique needs. Something new I’m excited to launch is a group series called Body Mindfulness. Through a series of 50-minute online sessions, we explore learning styles, stress, sensory sensitivities, and executive functioning skills and provide opportunities to practice a variety of body mindfulness strategies to integrate the ones that work best into day-to-day life. Three most important qualities or skills or areas of knowledge that were most impactful in your journey? Advice for others on how to best develop or improve on these? Intuitive Listening : Tuning into my anxiety as a sign that things are out of alignment so I can better understand myself and develop effective support strategies to maintain balance - while also accepting that it’s a process and some days are harder than others.  Some tools for developing intuitive listening are yoga, meditation, therapy, spending time in nature, or anything that quiets your mind from the outside chaos so that you can connect with yourself and understand what you’re feeling and experiencing. These practices help expand authenticity, trust, and empathy.   Curiosity : Be comfortable saying I don’t know and be proactive about learning. Seek out podcasts, books, lectures, mentors, and other resources that normalize your experiences and empower you to implement changes that create ease and flow, ultimately resulting in more joy and self-compassion. Belonging : Bring your whole story and self to your work and interests, sharing personal experiences in meaningful ways to strengthen connection, trust, and community. This doesn’t mean oversharing or telling everything to everyone. It requires honesty, vulnerability, and a desire to listen without judgment or solutions.  Spaces are growing virtually and in-person, and I’m excited to be a part of this expansion. It’s courageous to say yes to something unfamiliar, and our emotional health needs to find these places where we feel a sense of belonging and can show up as our full selves.  Are you looking for folks to partner or collaborate with? If so, who are you looking to collaborate with? Yes! I would love the opportunity to collaborate with anyone: Working on a college campus looking to expand resources & education for emotional wellness Working as an occupational therapist on a college campus,  supporting neurodivergent students or those living with physical disabilities Passionate about normalizing mental health from a holistic perspective Providing services for autistic adults, who are interested in offering adapted yoga to their clients   Who identifies as neurodivergent and is interested in offering perspective and suggestions to my body mindfulness workshop.  Having other lived experiences to enhance the workshop is welcomed!!!

In the beginning When I first became disabled my children were 1 and 2. I had absolutely no idea how to navigate being a mum of 2 little ones whilst navigating my own change in health, lifestyle, body, and even in my mind. At first, it was struggling with the 'simple things' of feeding, changing, and even playing with them. The noise, the constant chasing, and everything else ALL parents have to deal with. But despite all the challenges as they grew, I did too. I found ways to adapt so I could do the simple things and enjoy the time I got to spend with them and I even came to appreciate the life I now live. And the bonus is, my babes don't even know any different. So to any parent, disabled or not who is struggling. You will find a balance and ways to adapt. And get to enjoy the little moments. Insta: mindlesslymegan (delete when done)

My life with multiple disabilities My name is Auden Knapp and I have multiple disabilities that affect my life. I was born 3 months prematurely with an 80% chance that I would die shortly after birth. It is a miracle that I am alive! As a result, I have 6 lesions on my brain and have severe learning disabilities. I also have ADHD and I am autistic. I also struggle with Tourette's Syndrome. All of this has shaped me into the person I am today. I am passionate about advocating for disabilities, especially being a person of color, where there is less visibility regarding the intersection between race and disability. I take each day as it comes. My Tourette's can make it hard to do daily activities like focusing on my school work or sitting in class. It can be really annoying and persistent and incredibly frustrating at times! My Autism and ADHD make it so I miss social cues, dislike loud noises & the textures of my clothing, and travel to places. I often miss important deadlines and have trouble focusing on tasks. I frequently feel like my brain is like a TV that is skipping through multiple channels at once. My severe learning disabilities make schooling INCREDIBLY difficult. I am going into my last year of college and I'm graduating soon. This accomplishment will be so important to me! Learning concepts in school has been a nightmare in itself. Thankfully, my parents have advocated for me ever since I was little and I have a strong support group of friends. I am proud to be a part of the disability community. This is who I am. I cannot change my brain, I can only change the way people THINK about the way in which my brain works.

We must end the stigmas associated with chronic illness and mental health. Hello, my name is Tammy and I'm honored to share about my experience regarding suffering due to stigma. Two years ago I fell very ill. I had no clue that I would have to PROVE my illness to the world. I'm an advocate that even my providers could not help. Ehlers Danlos can be systemic and quite complex. Many viewed me as an attention seeker despite my obvious serious symptoms. Many viewed me mentally ill yet denied me compassion. Had my providers at the time understood what I was facing there would not have been so much confusion for my friends and family. I slipped into the cracks and it nearly cost my life. Dynamic disability means that one day I function and the next I may be laid out. It broke my heart to become too sick to finish my BS in Behavioral Health Science. However, my studies prepared me to become my own safe place and advocate for others. The Ehlers-Danlos Society rescued me! I was granted a scholarship to the EDS Emergency Care Summit! Even more surprisingly I won the EDS Summit Whova, world leaderboard. I had to learn how to stay alive. I look forward to another scholarship as a reward. Rare disease advocacy fulfills me. Awareness is critical for rare diseases. Too many patients are losing hope from feeling like a disgrace. Being sick can be a full-time job. The last thing they need is more weight put on from disbelief. All are precious. All deserve to be treated with dignity. I vow to help break the stigma.

How it Started I was no stranger to pain. After all, I was diagnosed with chronic daily headaches and migraines, fibromyalgia, and CFS/ME at the age of 15, but I never imagined that these would take a backseat to a whole new slew of diagnoses in my 20s. What started as a normal day at the video game studio I worked at changed into a whirlwind of ER visits, multiple doctors, and road trips with a single step. Well, actually, a single missed step. As I ran to the kitchen from my office to make some lunch, the seemingly innocuous three stairs I'd gone up and down countless times changed my life. Suddenly, my left foot just wouldn't flex. I later learned that this is called "drop foot". I couldn't move my foot and just slid down the stairs. Being the "worker bee" that I am, I was confused, but still got my food and did my best to get back to my office. I mean, it didn't hurt, so how bad could it be? As I was finishing up for the day, I figured it couldn't hurt to ask my mom, a nurse practitioner, to see what she thought about it. It was then that I realized that my calf had been numb for a couple of weeks, but I had just chalked it up to one of the many weird effects of fibromyalgia. My mom didn't agree. She told me that this could be very serious and for my husband and I to meet her at the ER. The ER, the Neurologists, and the Diagnosis After several hours (of course), all they could tell me was that I had drop foot. They put me in a soft cast, sending me home with steroids and a follow-up with a neurologist. By the time I had the neurologist appointment, the drop foot was improving, but they still wanted to do an EMG/nerve conductivity test. This showed that the largest nerve in my leg, the peroneal nerve, had died, and the one in my right leg was going with it. They also said that regrowth was going to hurt. However, both were also working hard to regrow, and I was lucky (for once). But they couldn't figure out what caused it, especially since I had numbness and burning spreading from my feet and legs, through my whole body in the coming months. A lot of diagnoses were thrown around, but I ultimately ended up with a referral to Washington University at Barnes Jewish Hospital in St. Louis, MO, to the neuromuscular division. This was several hours away, so my diagnosis went slowly. Tests and MRIs were ordered in my hometown in between trips up there, and many doctors and their students tested me while I was there. Dozens of diagnoses were ruled out, from Baker's cysts to multiple sclerosis. All the while, I ended up with a leg-up brace and antalgic gait, leaving me needing a cane at 26. The med students loved me though! After a year or so of back and forth, trying to rule out life-threatening diseases, I got lucky again. My specialist, who had been thinking this could be my issue from the beginning (though I'm not sure why it took him so long to want to test for it), suggested a skin punch biopsy. Come to find out, he was one of the top three doctors in the US who had been studying and publishing papers on a certain disease and was literally the only one nearby me who even knew what it was. Since I lived far away, when the results came back he called me right before Christmas. The skin punch biopsy found that I had the worst case of small fiber peripheral neuropathy he'd ever seen. In fact, it was also classified as "non-length dependent", which is apparently a lot less common. But I had an answer! Small fiber peripheral neuropathy (SFPN or just SFN for short), means that the small nerve fibers that cover all your skin and most organs lose myelin, the protective cover on all nerves, and die. This is what was causing the numbness and burning. It can sometimes present in larger nerves (just to get your attention, I guess), and cause things like, you guessed it, foot drop! For most people, it generally affects the feet and lower legs, and occasionally the hands and lower arms. For me, with that pesky non-length-dependent version, it affects everything. Literally from head to toe, inside and out! More unfortunately, it is idiopathic, so I can't treat the underlying condition that caused it, as it is unknown. There are a couple of tests I could still try, but he seemed to think that it wouldn't matter, which is not so lucky. I've narrowed it down to the most likely cause, but it is nothing that can be treated. Furthermore, as of last year, the doctor quit the hospital and moved, and is no longer treating patients. I guess my luck ran out! But, I still consider myself lucky to have fallen into the lap of the one doctor in my area who knew, and knew well, what I had and was able to diagnose it. Especially since it can take even longer for most people, and not everyone has access to that test. After the Diagnosis, and a Word of Wisdom I've gotten several more diagnoses since, such as dysautonomia. This, is specifically, related to small fiber peripheral neuropathy, as it's expected that 30% of people with my dysautonomic disease, POTS (postural orthostatic tachycardia syndrome) have. I was just diagnosed in the opposite way that most are, with SFPN first! Though he's left the practice and Wash U entirely, I'm still grateful to that doctor, as I know I'd likely still be awaiting answers more than 10 years later! It's been a pain to find knowledgeable doctors since, but I got lucky again after a disability appeal session that included a specialist from across the country. The specialist told the judge to trust everything my doctor had written in (and my records), because he is one of the best authorities on it. That specialist said I was lucky to find him, too! And though now I'm basically best friends with pain (we've been together for so long!), and have more than ever, I'm at least not in the dark about it. I ended up on disability before the age of 30, and still use a cane. Occasionally, I'll use a rollator or wheelchair. I've had a lot of fun creating wild stories about why I have a cane at such a young age (especially when this first started since I was only in my mid-20s) since random strangers love to ask about the reason or give me the classic, "but you don't look sick" line. You've got to keep things interesting, right? You don't owe anyone your story unless you want to give it. But if they won't leave you be, use your imagination! I think my favorite story was the shark bite… Just remember, the road to diagnosis can be long and difficult, but hang in there! Advocate for yourself, always! You know your body better than anyone else, and you deserve answers. Also, I couldn't have gotten through any of this without my "support team". My specialist himself said so! Without my mom and my endlessly devoted husband who never once doubted me and has supported me through it all, I'm not sure that I would've kept pushing for the answers I desperately needed. Lucky again! Oh, and if your leg suddenly goes numb, try not to blame it on something else until it gets worse!

Hello, People on the internet call me Fishy and I live with Hypermobile Ehlers-Danlos syndrome. I wasn't diagnosed until I was about 19 years old and it's affected me in every way possible. Throughout my life, I knew that I had issues with how my body functioned compared to others my age. Throughout these last few years I've accepted I need the help of mobility aids, medication, assistive devices, and most importantly help from family and friends. I use a wheelchair about 80% of the time as it's hard for me to walk without being in pain. It definitely is hard, but I do have hobbies like other people my age. I love to travel and try new restaurants, and one day I want to see the world even if I'm on wheels. Being in my 20s I see my peers having many different experiences than me, which can be tough. However, I want to try and live in a way that is meaningful to me despite all the physical pain I am in. I still have trouble accepting that I am disabled and that I need to take things at my own pace, but I am hoping that the more I talk about it, the more okay I will be. Remember, each day is a new day. If you need to take a break, that's okay! You know you have one body and you need to make sure you can take care of it as best as possible.