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I write about leaving my teaching career and learning to live with a chronic illness and chronic pain When I was first diagnosed, almost thirteen years ago, I felt relief. Finally, I had a name to explain the pain in my left leg. Finally, we knew why I could no longer walk, stand, sit, or simply feel as comfortable as I had in the past. UCTD, Undifferentiated Connective Tissue Disease, wasn’t fatal. It wasn’t even familiar, which I initially took as a good sign. If it was really bad, I surely would have heard of it before. Now I know that’s not necessarily true. My rheumatologist explained UCTD was an autoimmune disease, one that shares overlapping symptoms of rheumatoid arthritis, lupus, and myositis. “It’s rare. If you want to walk around and call it ‘the Kennar’ you can,” he said. I didn’t then. I don’t know. I left that early morning appointment thinking everything was finally going to get better. It had taken almost a year and a half for me to get to that point. I drove to my elementary school classroom thinking UCTD would just be one more thing, one more detail, one additional side note in my medical file — along the lines of my asthma (which wasn’t a daily problem) and my allergy to penicillin. I went to school that morning, stood before my fourth-grade class, and continued on with the lessons I had planned for the day. I would stop by CVS on my way home and pick up the prescriptions my doctor had called in. I felt confident these new pills would fix the problem because that’s what medication had always done up until that point in my life. I could not have known that when it comes to a chronic illness, such as my autoimmune disease, there is no such thing as “fixing the problem.” There was no pretend magic wand I could wave and make things all better, like I did with my then-three-year-old son when he bumped into a corner of the coffee table. No one could kiss my left calf and make the hurt be “all-gone,” like a Mommy’s kisses often do for their little ones. Leaving that appointment, I could not have known that within two years I would retire from my twelve-year teaching career due to a disability. I could not have known instead of being known as Mrs. Kennar, fourth-grade teacher, I would become Kennar, Wendy, a chronic illness patient. For many, many years I actually spent a lot of energy trying to pretend that I was the same Wendy I had always been. My therapist was the one who pointed it out to me. “You spend a lot of time and energy trying to act like you don’t have a disability. But you do,” she gently told me. Living with an invisible illness has forced me to acknowledge my own earlier, ableist views. I’m embarrassed to admit I used to see drivers parking in a handicapped parking spot exit their car, seemingly looking “fine,” and judging them for being dishonest and lazy, using a parking spot they didn’t need. How little I knew. (I never confronted those drivers. I always kept my judgmental thoughts to myself.) Likewise, living with an invisible illness has taught me that everyone is dealing with something. Everyone is walking around with scars and hurts, whether they’re easily seen or not. I do believe that living with my invisible disability has helped me to become more patient, more tolerant, and more likely to give someone the benefit of the doubt, because you never really know what someone is dealing with simply by looking at them. At my core, I am a teacher. Now, I aspire to teach through my writing. Autoimmune diseases are confusing. Many of them are seemingly invisible, and much about them remains unknown. Through my writing, I can connect with others. This is not the life I would have chosen, but it is the life I am living, and I write about it to help give voice to others with shared experiences of living with invisible illnesses and chronic pain. As both a reader and a writer, I know there is such magic that happens when someone reads something and feels understood. Check out my blog here: https://wendykennar.com/

Life Update “@KreationsByKittles” (sharing my disability on Instagram) began when my occupational therapist suggested that I use kindergarten items to help improve movement in my less dominant (left) side affected by Cerebral Palsy. At 27, I started making kindergarten-style crafts for family and friends with my left hand (AKA LEFTY). Even though it’s a struggle, I've found a new love and confidence in art and living with a disability. Most of my posts were about the paintings/crafts I made (and gave away) with my less dominant (left) side affected by Cerebral Palsy. More recently, I’ve been focusing on my journey as an adaptive athlete, and I post tips and tricks I’ve found along this journey to improve my quality of life. Just because you have a disability doesn’t mean you can’t accomplish great things. I was diagnosed at the age of six months with Left hemi Cerebral Palsy. I’ve always had to concentrate extremely hard anytime I use any part of the left side of my body so using it is very tiring physically and extremely tiring mentally. Why I sport: Being physically active is something my parents always pushed from a young age (if my sisters were doing it, I was going to try it as well). So throughout childhood, even though I wasn’t the best, I played different sports including: swimming, cross country, softball, basketball, lacrosse, soccer, and even cheerleading. I even played college soccer for a brief period of time. Sports were always challenging for me. When other people were working hard, fighting to get starting positions, I was fighting just to make the team. I think from an early age, this helped me learn the true meaning of determination. I learned that you can do anything as long as you adapt. Sports for me were never and still aren’t about being better than the person next to me, but about focusing on getting stronger for myself. I use sports to improve my balance, my walking strength, and my overall physical ability. I noticed the harder I worked at each sport, the less painful and less spastic my Cerebral Palsy was. Looking back, I know for a fact that sports gave me the ability to be able to walk as well as I do now. I never want to lose that ability. After college, I did some powerlifting, CrossFit, and running. I was never a runner. I hated running, and honestly, I still do. I remember my first cross-country race. I fell completely down the hill at the very start of the race. I cried, picked myself up, and finished the race. During Covid, I had some friends who wanted to get outside and they joined a run club, so I decided to give it a try. We met weekly, and during the first week, I couldn’t even run .3 of a mile without stopping to walk. After months and months of practice and training, I was able to run my first 10K without stopping to walk. It was such an achievement for me. I have never been prouder of myself. Now at the age of 33, I’m always looking for ways to stay active. Recently, I decided to increase my gym membership's monthly classes to unlimited. Now I take about 4 to 5 classes a week and I’ve never felt stronger! When I started out at this gym (OrangeTheory) in 2018, I could barely do one class a week without being extremely exhausted. Working up to 4 to 5 classes a week is such an accomplishment for me. The coaches and members at OrangeTheory have been wonderful at adapting the workouts and I’ve been able to get stronger each time I step into the gym. I am so thankful to everyone at OrangeTheory for allowing me to continue to grow as an athlete. OrangeTheory workouts include a treadmill, a rowing machine, and free weights. As of today, I have taken over 400 Orange Theory classes! I have a lot of people reach out to me (with disabilities and without disabilities) who ask me how I keep going or claim that they’d never be able to do what I do. I always say to start at your own pace and continue to show up for yourself even on the days that you don’t want to because you never know how far you will go. Consistency always pays off.

Hello! My name is Dharma Bredell. I am 23 years old and just before my fifth birthday, I was diagnosed with Cystic Fibrosis, or CF for short. Cystic Fibrosis is a progressive, genetic disease that causes mucus to become abnormally thick consequently blocking all the tubes and channels throughout the body. It mainly affects the lungs and digestive system in various ways. The thick mucus traps bacteria in the lungs leading to frequent hospitalisations to treat the infections. My normal day consists of two nebulisations with chest physiotherapy in between twice a day, in the morning and evening. I take a handful of supplements and medication to keep me going and I have a port-o-cath to make IV access a little bit easier when I am admitted to the hospital. My normal might be different from yours, but I wouldn’t change my life one bit. I have a saying, “I have Cystic Fibrosis, Cystic Fibrosis doesn’t have me” and I live by that. I am the founder of Dharma Breathes. Dharma Breathes is a non-governmental organization that would fund the cost of a life-saving treatment called Trikafta, also generically known as Kaftrio or Trixicar. Trikafta directly targets the underlying genetic cause of Cystic Fibrosis, correcting the malfunctioning protein made by the faulty CFTR gene. Accessing Trikafta in South Africa can cost up to millions. The main objective of Dharma Breathes is not only to help me but also to help individuals like me who cannot afford the medication. Whilst also spreading awareness to get this life-saving drug at an affordable price available to all with Cystic Fibrosis in South Africa. When I was younger, and the hospital stays got a little too long and the nebulisation and medications became too much, I told my parents I wished there was a simple treatment in the form of a pill. And now there is, so please check out my website dharmabreathes.com or socials @dharmabreathes. Without your help, I and others like me will not be able to access this treatment. A little bit about me besides having CF: I am currently doing my Bachelor of Social Science Honours in Psychology (BPsych Equivalent Programme) to become a Registered Counsellor specialising in chronic illnesses, grief, and trauma. I completed my undergraduate degree in Bachelor of Social Science (Majoring in Psychology and Counselling). I enjoy working with people and also want to become a motivational speaker. My happy and calm place is being by my partner’s side through anything. I love exploring, adventuring, and trying new things. Whether it is hiking to a majestic waterfall or lookout point on top of a mountain or trying a new cafe. I am obsessed with rocks, shells, sunsets, and the ocean. I have two fur babies, Camelot and Melanger, who you would often see on my Instagram either sleeping in my arms or playing in the grass. In my free time, I enjoy spending time with my parents laughing around the kitchen table, catching up with friends over coffee, making videos and content for social media talking about my life experiences, and spreading awareness for CF in a unique humorous way. Go check out my videos @dharmabredell Thank you for your support, and as always, sending positive vibes your way! ~ Dharma

Beneath The Tracksuit I was diagnosed with Multiple Sclerosis at 26. I handled it well at first, I think. The symptoms were scary but they were minor, so I think mentally I figured I could live with it. At 30 I had a major relapse and new inflammation appeared in different areas of the brain and in my central nervous system. This left me with several life-changing symptoms. I need a walking stick and I use a wheelchair or a mobility scooter. I have bouts of the strangest pains, in the face, on the skin, in my bones. Fatigue and brain fog can be horrendous. This left me with horrible depression and heightened anxiety. I felt horrible. With the support of a counselor and my wife, I began working my way through it. I began writing poetry too. I managed to find a voice through the pain. I used writing as a tool to help me with my issues. It was a game-changer for me. All my struggles were hidden. The MS, the depression, and the anxiety are all invisible and happening "Beneath The Tracksuit". So I decided to use that as my poetry name, "Beneath The Tracksuit". I took writing about it to a whole new level. I used my painful words and built a career. I have written two books, I have music available on all streaming sites, and I have been featured in magazines all over the world. I'm working with a fellow MS Warrior "Atom St George" on a project "The Painter and The Poet". He is an outstanding painter from California. I perform on stage reading my work, I have even performed at a festival. The end goal with performing is to have my stage show. I have made so many new friends, true friends and I have fans and followers from across the globe. I'm raising awareness and supporting so many people. My path to Robbie from Beneath The Tracksuit all started with a diagnosis.

In The Beginning, There Was Pain Hello! My name is Autumn Skylar Dolinger. I am 22 years old and have been classified as disabled since the age of 16. Currently, I am a user of a rolling walker for mobility and stability. You may be asking yourself, what happened? Well, allow me to illuminate. It started with a headache. One day in 2015 I got a headache that, to this day, never went away. I was told at the time not to really worry, that it would pass, and that as you get older headaches are more likely to happen. Just be patient. Well, a few months passed, and that freaking headache hadn't gone away, so off to neurologists I went. I got brain scans and they told me at the time that though I have a condition called Arnold Chiari, it wasn't that bad. Spoiler alert: it was actually incredibly bad. Not even a month after that appointment I had a singing recital. It went fabulously and I was so proud, but something felt off. My headache was worse than usual but I brushed it off. That is, until we were on the way to a restaurant to celebrate and I told my boyfriend at the time something was wrong. He then told my parents and we drove home. Within seconds of walking through the door, I began to scream. I cannot even describe to you the pain I felt that day. I was convinced my head was going to pop and I was done for. My parents brought me to the ER and I was admitted. Not long after, they transferred me to a different hospital that was equipped to handle children's neurology. It was there we found out what was wrong. That Chiari the doctor told me not to worry about was bad. If you don't know. Arnold Chiari is a brain abnormality in which the cerebellum tonsils of the brain descend 5mm or more. 5mm is the criteria, keep that in mind. My tonsils descended 28 mm and were getting close to hemorrhaging as they tried to sneak into my spinal canal. I experienced fits of opisthotonos which is very rare in chiari and is typical only in severe infant cases, but given how bad my chiari was my body could not handle what was happening as the cerebral spinal fluid was getting trapped. I required emergency brain surgery and they hoped that would fix me. It fixed some of what was wrong, the life-threatening emergency, yes, but I walked into that hospital and could not walk back out. I developed severe tremors in my legs, balance issues, and general instability. I was transferred to an inpatient rehabilitation center and there they treated me so terribly. They blamed everything on my mental illnesses and even accused me of seeking drugs as I took the pain medication I was prescribed as often as possible. They didn't care that I wasn't even a month out of surgery, they just had it in their minds that I was a nuisance. Even when I developed Bell's Palsy they told me it was just "anxiety" and refused to treat it. I was labeled a head case then and that has followed me. It took a lot of hard work but in about 5 months I was able to transition to walking, then eventually to a cane, and then to nothing. We thought that was it, but it wasn't even close to the end. It was only the beginning Being Labeled and its Effects About a year after that first surgery, the cycle began again. Only this time, something else occurred. Something we still have had difficulty in definitively diagnosing but believe to be a functional movement disorder caused by misalignment of my spine blocking CSF flow. I began experiencing nonepileptic seizures 5 to 8 times a day. I was jumping around from doctor to doctor because everyone wrote them off as psychogenic simply because they were not originating from epilepsy. This label made it incredibly challenging to find any doctor to take me seriously as one looked in my chart and they thought they knew me and what was wrong with me. That was all in my head. Eventually, I found a neurosurgeon out of Weil Cornell, doctor Jeffrey Greenfield. He was the doctor who diagnosed me with Ehlers-Danlos Syndrome, a disorder affecting the collagen throughout the entire body, and Craniocervical Instability. It was he who believed the origin of my episodes was structural and related to blockages in CSF flow caused by the instability. I spent months in a cervical collar, something that stopped these episodes in their track and proved his theory. It was after these months I had my second brain surgery which included a revision of my decompression and a craniocervical fusion. They discovered as well, that the reason I did not get better after the surgery I had originally was because the doctor removed too much skull and made the craniocervical instability even worse. After this surgery, I had another stint inpatient at a rehabilitation center, the same as the first time, and even still they treated me poorly. In fact, so poorly that they never cleaned my surgical wound and I had to be taken back to Weil Cornell's ICU to receive 5 different intravenous antibiotics to prevent permanent damage to the surgical site and even to my brain. Luckily it was caught, only because I noticed pus coming from the area. Had I not noticed this, the fiction might have spread to my brain and killed me. Afterward, I progressed but dealt with emotional issues and severe anorexia, something I had struggled with previously. I felt if I could control my food at least I had control over nothing. If I could control my weight at least it was one part of my body I had control over. From Then to Now Over those next 4 years, I dealt with relapses in both my anorexia and my mobility and struggled trying to hold myself together. We were so confused, I had the surgery. Why wasn't I fixed? Even my surgeon said there was nothing more he could do as from a surgical standpoint I was fine and that I needed to continue neurological consultations to figure out the final piece of the puzzle. Again, I was bouncing around neurologists as they took one look at my mental health history, one look at the scars from self-harm on my body, and decided that everything was stress-related. But we knew something else was going on. I struggled terribly and with that came episodes of mania and depression which would later be diagnosed Bipolar, and still struggled with anorexia. In January of 2020 I was the lowest and sickest I had ever been. They were so close to putting me under surgery to give me tube feeds through a J Tube, but that threat got me to eat in tandem with ElectroConvulsive Therapy. I survived and gained back 50 lbs but then COVID hit. I was so scared and lonely and out of my gourd. A man took advantage of that and took advantage of me on numerous occasions. I thought he was my friend and this destroyed me. Months after this occurred, another physical relapse took place as well. My partner and I lost friends to this man's lies and with that, I lost hope in everything, including getting better physically and mentally. But then, lightning struck. I found a neurologist who looked at my brain scans and saw something I had been begging doctors to look into, bright spots aka lesions. At first, we ruled out MS, and then came the blood tests for autoimmune disorders that cause lesions in these areas, and we found they indicated one condition: Lupus. As odd as it sounds, all of these conditions I have mentioned as well as the numerous others I have not included in my story all connect through a web. Doctors are still trying to find out. You are more likely to have the conditions I have if you have Ehlers-Danlos Syndrome. So, while I am now currently fighting to get off of my walker I am also in the process of seeing a rheumatologist in June to definitively diagnose me with Lupus and begin treatment. All along, there was something else. Something that fed off of the emotional and medical stress my body was under and caused these relapses. Many don't know this but Lupus can cause relapses and remission very similar to MS. My presentation of relapse is the instability of the legs, leg tremors, balance issues, and weakness all from a neurological standpoint. In rarer cases, Lupus can cause this. Now I am working with doctors to get better and get back to a cane and then to nothing. My ultimate goal is to become an advocate for the numerous conditions I have and to rise as an actress and singer, and every day my goals grow closer to completion. Conditions I have not mentioned but also related to Ehlers-Danlos Syndrome: Postural Orthostatic Tachycardia Syndrome, Sleep Apnea, Asthma, GI Dysmotility, and Interstitial Cystitis.

About me I am Stephanie. I am 22 years old, and I was born with muscular dystrophy merosin negative which is a muscle wasting disability. I can't walk, I can't do anything like clothing myself or cleaning myself, I can't brush my hair. I need care 24 hours a day. I also can't eat or drink anything by mouth. I need a feeding machine and a breathing machine at night when I sleep. My mouth is also always open because the muscles in my face prevent me from closing my mouth. I am trying to be a content creator on Twitch, YouTube, and TikTok

Road to recovery! Hello, I am Samar and I am a c4 complete quadriplegic. I was injured in a high school football game. Ever since I’ve been trying to recover and get the movement back that I lost. The road to recovery is difficult, but if you put your mind to it, yoocan do anything!

My life is kind of weird For as long as I can remember I have never felt nor wanted to be normal. To the rebellious punk rock kid inside me, who lives in my head to this day, normal was just a synonym for ordinary aka boring. I truly never understood why this was a goal. When I got diagnosed with YOPD [being female and under 50 it made me quite the rare one] I found I had no cohort to retreat into who would metaphorically circle the wagons when I needed support. To coddle the pieces of my fractured ego, my only option was to protect myself behind physical barriers of walls, curtains, and windows. It took more than a year of my self-imposed solitude working through my thoughts for me to pluck up the courage to try getting back into the world. Really that was the first time in my life I had desperately wanted to fit in so much to just slip by unnoticed, the people I met during this brief attempt at being normal didn't last. The punk rock kid in my head was raging and the voice in my head would keep repeating ''this isn't me'', after this feeling had passed I would learn it is referred to as internalized ableism. I can't pinpoint the exact moment my road to self-acceptance began. My journey has been much more nuanced than that. I can however pinpoint the exact date 6 months ago [thanks Facebook] when I stood up and stopped apologizing for myself. For anyone who hasn't lived the life of a military spouse think GOLDFISH BOWL. A friend [quite innocently] told me how people had been referring to me as the one with Parkinson's. I was livid. I had done so much work to get back to the real me but still, all people could see was my illness. I sat down at my computer and crafted the most wonderfully passive-aggressive post I have ever written in what felt like the blink of an eye. In one final act of social defiance, I logged out!!! A few hours later I turned my phone back on and ping ping ping the notifications kept on coming, the love was so great that it caused me to change how I see myself. I realized I had been viewing myself through a distorted lens coming from the assumption that I am broken. I also realized the benefit of choosing your friends carefully Those who mind don't matter and those who matter don't mind!!!!

Initial diagnosis My name is Megan Crawford, and this is the story of John, our son, who was diagnosed with Transverse Myelitis. John was a very active baby. He was growing and starting to form words and almost walking. He was able to stand around a low table and walk all the way around it just by holding on. On March 12, 2013, when John was just 9 months old, we noticed he was being extra fussy. That evening, he was suddenly unable to support himself and could not hold his body up. Knowing something was wrong, we took him to our local Emergency Room. They ran blood tests, a CT scan, X-rays, and even did a spinal tap, yet they could not come to any conclusion. By midnight, his respiratory system was starting to show signs of distress, so he was transported by ambulance downtown to Florida Hospital Orlando. Immediately, he was admitted into the Pediatric Intensive Care Unit (PICU), and doctors began scrambling to try to determine what was going on. His doctor ordered a brain MRI and a spinal MRI. The next morning, we received the news: “Your son has a rare condition called Transverse Myelitis.” My husband and I were distraught because of everything happening to John. We did not know or understand anything about the condition. Our PICU doctor explained that the myelin in John’s spine had been severely damaged because of the flu virus that he now tested positive for. Though not showing any flu-like symptoms, the virus had attacked the myelin which was causing his neurological system to shut down. By this time, John’s respiratory system was in a severe state, and we were told that life support was his only option. We could also see the paralysis setting in because of the damage to his neurological system. By the next morning, his body was paralyzed from the neck down. My husband and I moved into his hospital room where we would stay for nearly six weeks. We watched a team of cardiologists, neurologists, nurses, respiratory therapists, and physical therapists care for him and watch for any signs of progress. John was able to look at us and smile through all of the tubing, but that was all he could do for weeks. He remained on the breathing machine for 14 days. On day 14, he was taken off, but his respiratory system started to fail, and he had to be placed back on for another six days. Finally, he was able to breathe on his own once again and the tubes were removed. John’s neurologist stopped by every single day, hoping for any type of movement in his body. About a week later, we saw one small finger move. That tiny movement was what we were waiting for. Though still incredibly weak, it was a start. In the days that followed, we saw other fingers slowly start to move, followed by his toes. Due to the neurological damage, John was still not able to stand or take steps. For the first 4-5 years after the initial diagnosis, John was extremely susceptible to even simple colds. A slight cough would cause him to end up in the hospital for several days due to a weak cough and poor respiratory function. Thankfully, as he’s getting older, his system is getting stronger. Life changes Physical and occupational therapy (PT and OT) started in the hospital and continues to this day. John is still not able to walk due to muscle weakness, but with hope and hard work, we pray he will one day. He receives weekly PT and OT and, thanks to a wonderful nonprofit in Orlando called NextStep, we have an even more renewed hope that he will walk. The aggressive style of exercise being used each year has shown great improvements in his mobility. He can kick his legs, and rotate his arms and shoulders. Life these days John is now 11 years old. Although he cannot walk and probably will never be able to, he doesn’t let anything stop him. He is an honor roll student and has his own YouTube channel where he loves to provide Roblox tutorials, share supercar reviews, and even taste tests. We travel as a family as often as we can. A physical disability may be a life-changing event however we do our very best to ensure John has the very best quality of life. He is so loved by his family and friends!

The beginning My name is Kelsey Box, I am a T12 complete paraplegic. Almost eleven years ago I would've never thought my life would change drastically. But it did. On January 19th, 2013, I was extremely depressed, going through a heartbreak when I decided I no longer wanted to live. I drove my truck into a ditch going almost 100mph destroying it. I woke up not able to move, thinking I was going to burn alive when I smelt gas. I kept blacking out and woke up in the hospital with my family around me. They told me that I had broken my back and was going to be fixed. The next day, we found out I only had a one-in-a-million chance to walk again. Before I was paralyzed I raced off-road trucks, so naturally, my first question was if I could race again. Thankfully my dad built me a modified race truck. But a year into my injury I was hooked to the pain pills I was prescribed. Then I started using heroin and meth. I had turned into a different person. During that time my dad and I had gotten into an argument which led to the police being called. I left and not a half hour later I found out the state troopers unlawfully shot my dad. I went even deeper into my addiction and didn't know where else to go. Soon, I met my wife and was finally able to stay sober. With the help of her and my family, I am over 5 years sober. I went to college for my welding certification and now weld today. Life is not easy but once you get past the daily struggles of being in a wheelchair, you find ways to do it. We have a one-year-old son, and I can take care of him just like an able-bodied person. I plan on becoming an advocate for people with disabilities, I want to help them overcome the obstacles in their life. No matter how big of a mountain is in front of you the top is always the most beautiful.

It turned out I had a brain stroke Hello my name is Tomer. I am 28 years old. I am a surfer and swimmer with gold medals. I won the national swimming competitions for the disabled. I have a gym trainer certificate from the Wingate Institute. As long as I can remember, I have always loved sports. I have played soccer, basketball, running and mainly used to climb trees, but 17 years ago when I was 11, it seemed that everything was lost. It was the first day of sixth grade. My last year of elementary school it was a very hot day in the afternoon. My friends and I went to play football in the playground of school. Suddenly, I fell hard to the ground, I felt very dizzy and I could not get up. It turned out I had a brain stroke. A new journey for me It was the moment that marked the beginning of a journey that I continue today. For the first three weeks I walked in the twilight of consciousness. After the ICU, against the opinion of doctors, I remained alive and moved to the Levinshtien Rehabilitation Center. I was silent, I could not move my right hand which was paralyzed. My willpower and the hard work they gave me, helped me return home after a year and a half. I could walk again, speak and move my hand partially. In cognitive test the drift I had in my brain destroyed some additional capabilities, such as the ability to do math and understand statistics and gave me attention and concentration problems. To be a victim was not an option! I my thought I had looked for the meaning of this in my life. It was hard for me to accept what landed on me, trying to figure out why it happened to me I thought that no girl would want me the way I am. It was very hard for me to part with complete control over half of my body especially since before the event I was an outstanding athlete. To be a victim was not an option! My personal wars did not stop for a moment, starting from staying in regular school, to go through physiotherapy every day, pass a number of surgeries in my hand and finally learn to get along with what is possible and what is not. Every period and challenge I pass takes me forward in understanding the limitations Next thing was to join the army. After six years of difficulties and delays I wad able to volunteer and join a combat unit called Sting as a Combat Support Team Soldier. I really liked the service there. Then, I signed up at Ruppin College to study for BA Degree and and finished successfully with an academic diploma. Every period and challenge I pass takes me forward in understanding the limitations that I have and how to deal with them or how to get around them. I know to insist on doing things, which indicates to me that I can do anything I want. I'm here today to tell you that I would not choose a stroke, but if something hard happened or will happen unexpectedly, you can turn it into a force that drives you in life and requires you to search for new meaning. Thank you very much.

… Hi, My name is Meg and I’m 22 years old. I first started suffering from Interstitial Cystitis when I was 13. It was around the same time that my periods began. I had urodynamics via the NHS alongside various medications to treat an ‘overactive bladder’ but nothing seemed to work for me. I decided to see a private consultant and was misdiagnosed with Ehlers-Danlos Syndrome, as I also suffer from hypermobility. As much as the flares were painful, they didn’t impact me that much as I was only having them every few months. … I finally came across Interstitial Cystitis in December 2020. I had installations through the NHS but they discharged me due to their diagnosis of there being “nothing wrong with my bladder.” … I was immediately positive that this was Interstitial Cystitis. My symptoms had become unbearable, so I decided to get a second opinion from a urogynaecologist in May 2022. He performed a cystoscopy and I was finally appropriately diagnosed with Interstitial Cystitis and Urethritis. I have recently changed consultants and have had another cystoscopy. I am now waiting for the results of this so we can explore treatment options which I am feeling very positive about! … The flare-ups have become so frequent and painful to the point where I had to quit my job. It has taken full control of my life in a way I never thought it would. This consequently has taken its toll on my mental health & and has stopped me from being able to live my life like a normal 22-year-old. But I keep fighting through it as best I can and keep the hope that one-day things may change.