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Tag: Invisible Illness

  • It Took Dozens Of Doctors To Explain My Symptoms & This Heavy Metal Was To Blame

    It Took Dozens Of Doctors To Explain My Symptoms & This Heavy Metal Was To Blame

    My healing journey wasn’t quick or simple, but I’m more in tune with my body than ever.

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  • I’ve Had IBS & Gut Symptoms For Years — How I Learned To Manage

    I’ve Had IBS & Gut Symptoms For Years — How I Learned To Manage

    While some health issues are visible to the outside world, many people face chronic conditions that don’t have externally visible signs or symptoms—also known as invisible illnesses. In mindbodygreen’s series, we’re giving individuals with invisible illnesses a platform to share their personal experiences. Our hope is their stories will shed light on these conditions and offer solidarity to others facing similar situations.

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  • I Returned From Service Overseas With A Health Problem I Never Anticipated

    I Returned From Service Overseas With A Health Problem I Never Anticipated

    After multiple tours in Iraq, I returned home with a hidden health battle that would take years to reveal itself

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  • I Was 22 & Healthy When I Got This Autoimmune Diagnosis—What I've Learned Since

    I Was 22 & Healthy When I Got This Autoimmune Diagnosis—What I've Learned Since

    I know have a tool kit that I can reach into whenever my body needs extra support.

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  • It Took Dozens Of Doctors To Explain My Symptoms: This Heavy Metal Was To Blame

    It Took Dozens Of Doctors To Explain My Symptoms: This Heavy Metal Was To Blame

    My healing journey wasn’t quick or simple, but I’m more in tune with my body than ever.

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  • I Was 25 & Active When MS Turned My Life Upside Down

    I Was 25 & Active When MS Turned My Life Upside Down

    Over the next six months, I saw dozens of doctors and had countless hospital admissions and tests done: multiple spinal taps, countless MRIs and blood draws, plus visits with neurologists, neuro-oncologists, and infectious disease doctors. I was poked, prodded, and talked about like I wasn’t lying in bed in front of the doctors.

    All anyone could tell me or my parents was that I had a demyelination disease (a term encompassing conditions where there’s damage to the nerve coating). It’s similar to when the rubber coating on your phone charger starts to break down. Eventually, your phone needs to be in the perfect position for it to charge. That’s what was happening in my spine.

    During a flare, each lesion compromised my spine’s myelin sheath or protective coating. Each part of your spine is responsible for a different function of your body, and my flares affected the mobility of my extremities and vision.

    But since my symptoms were a bit of a mixed bag, doctors could not be certain of exactly what I had. I didn’t neatly fit into a diagnosis box. The other disease often discussed was Neuromyelitis Optica (NMO), or the angry cousin of MS.

    Running out of options, my doctors started me on a form of immunotherapy that could be used for both MS and NMO. It’s a powerful drug traditionally used for non-Hodgkin’s lymphoma and lupus. They basically threw me a hail Mary. The first time I received treatment, I had an allergic reaction where my throat closed, and I broke out in hives for eight hours. But ultimately, it was the best option I had at the time.  

    The doctor’s appointments and tests continued. From the first ER visit to the first hospitalization to getting a diagnosis, the whole process was unbelievably terrifying. I lost and had to regain a lot of my faculties. I had to do occupational therapy to relearn how to use zippers, hold a toothbrush, and walk with limited sensation on my left side. I had no idea what was happening to me or what my quality of life would be going forward. 

    By February, seven months after my first flare, I got a formal diagnosis. I had primary progressive Multiple Sclerosis. There is no cure, only “disease management.”

    Ashley Curtis

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  • A Mystery Illness Was Ravaging My Body—Until I Revamped My Lifestyle

    A Mystery Illness Was Ravaging My Body—Until I Revamped My Lifestyle

    This was the beginning of my journey in health and wellness. I was determined to regain my health and independence. I was finally released from the hospital and sent home with daily instructions on how to manage the pain, the flare-ups, and the tell-tale signs of more critical care with a drug treatment regimen. I had to learn to consume an unimaginable number of medications, taking multiple pills at different times daily with countless side effects. These were not the typical Flintstone vitamins I had once enjoyed! My body and joints ached, my face was flush with what is referred to as a butterfly rash, and my hair was falling out. I felt inflammation throughout my joints and body. 

    It was difficult to tell if the medications were helping or hindering me. With the onset of neuropathy and loss of sensation in my hands and feet, it became apparent how inflamed my central nervous system was. I began discovering new symptoms as time went on, and doctors would then prescribe me additional medication to treat my symptoms. The side effects of the medications were very real and debilitating. Operating on what felt like guesswork alone, I was entering a vicious treatment cycle while rotating between rheumatologist, cardiologist, immunologist, and endocrinologist appointments regularly. 

    A mystery illness is much more pervasive than conceivable. Without significant change to my health and unrelenting strong symptoms and health ailments, I was brought in for a discussion with my doctors and parents about next steps if things did not begin to get better, which was to remove the lining of my heart, known as the pericardium. Before pursuing this very dangerous option, they suggested a drug trial that could help but had serious side effects that could cause cancer and infertility.

    The suggested steps were nothing I was able to accept. I should be going to school and preparing for college. How could I, and why would I take a drug that would cause such damage to my body? How could I make myself healthier? What steps could I take to heal and protect myself? It was from this moment that I sought out change and relentlessly pursued healing myself by combining eastern and western medicine.

    With word circulating about my health, an expert alternative medicine doctor contacted me. Hearing of my story, he said, “I am a healer, and I want to help heal you holistically.” He amazed me by reaching out, and insistently refused payment for any treatment. He said, “See if this helps—and if we can get your nervous system functioning properly and your body in alignment to better defend itself.”

    Deep down, I knew my only hope in attacking this virus was a strong immune system. While the medications I was prescribed were critical for my care at the time, they were also strongly suppressing my immune system. 

    Meeting this alternative medicine doctor had offered me hope and insight into healing my body. From that vantage point, he gave me perspective and knowledge to help strengthen my immune system holistically. 

    The doctor taught me ways to reduce nervous system disruption, and how health can return to my body—things you do not hear in typical conventional medicine.

    The combination of both conventional and alternative treatments began to show a significant reduction in my symptoms, and my body was responding. Committed to strengthening my immune system as if I were preparing for war, I was able to slowly decrease the heavy doses of medications. Within six to twelve months of adopting a healthy lifestyle and alternative modalities, my body responded incredibly. My last-resort surgery and need for medication treatment with cancer-causing side effects were no longer on the table! I was finally making a turn to control this mystery illness.

    Renée Marie Joyal

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  • I Had Bizarre Symptoms For Years Before This Autoimmune Diagnosis

    I Had Bizarre Symptoms For Years Before This Autoimmune Diagnosis

    I felt waves of emotions (fear, relief, validation) before anger set in. My years-long mysterious condition was a full-fledged epidemic affecting 1 in 5 Americans, and I wanted to shout it from the rooftops so others wouldn’t have to go through this, too. 

    New to TikTok, I posted a video about the symptoms I was told were “normal” that turned out to be signs of autoimmune disease. To my shock, it racked up millions of views in a matter of hours, and thousands of comments from women reaching out with eerily similar experiences. 

    Search #autoimmunedisease on TikTok and you’ll get a very real and terrifying snapshot of this epidemic’s stronghold on women in America: over 1.1B video views, and countless thumbnails featuring the faces of twenty- and thirty-somethings just like me. We’re turning to TikTok for the autoimmune support our medical system isn’t giving us. 

    The autoimmune epidemic disproportionately wreaks havoc on women – 80% of patients are women1, and certain conditions are 16 times more common1 in women. They are one of the top 10 causes of death for women under 64. Despite all of this, autoimmune disease remains largely overlooked and misdiagnosed by healthcare professionals. On average, we have to see 5 different doctors and wait nearly half a decade before receiving the correct diagnosis. Almost half of us are told our symptoms are all in our head at some point along the way.

    It was no coincidence when my sister, Claire, was diagnosed with autoimmune disease months later. She had similar, hard-to-pinpoint symptoms, normal labs, and dismissals from various doctors.

    Getting healthy again quickly became a full-time job for both of us. We threw ourselves into learning everything there was to know about these diseases, and what evidence-based interventions would bring us the most relief. As we dove into the research, it became abundantly clear how underserved our community was and how desperately we needed better support and tools. So we decided to team up and left our full-time jobs to fill the major systemic gaps that exist in today’s standard of care.

    Last year, we launched a virtual care platform called WellTheory to help women shortcut, and ultimately improve, the current path to an autoimmune diagnosis and receiving care. Our goal is to increase access to high-quality autoimmune care – making it affordable, empathetic, empowering, effective, and what we so desperately needed from the beginning. 

    But WellTheory is just one piece of the equation to reversing autoimmune disease. More broadly, it takes arming women with the resources to navigate the under researched and overlooked health issues that affect us the most – from fertility and menopause to autoimmune disease and beyond. 

    Ellen Rudolph

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  • Epilepsy Made Me Fear My Body — How I Reclaimed My Confidence

    Epilepsy Made Me Fear My Body — How I Reclaimed My Confidence

    At age 13, I was diagnosed with juvenile myoclonic epilepsy (or JME). It’s not nearly as severe as my sister’s form of the condition, but nevertheless serious.

    When I was 15, I experienced my first tonic-clonic seizure (also known as a grand mal seizure), which causes muscle contractions along with loss of consciousness (probably what someone might imagine when they think of a stereotypical seizure). At that point, I was put on medication for my epilepsy. 

    I had a lot of side effects as a result of this medication, and I wasn’t really open with anyone about what I was going through. I experienced a lot of anxiety, hyperactivity, and insomnia. Plus, the moment I was put on medication, my quality of sleep was severely impacted. I felt very low, and unable to concentrate—which are symptoms of epilepsy, but I believe they were exacerbated by the medication, as well. Considering sleep deprivation and stress are two major triggers, this was all very concerning. 

    While people primarily associate my condition with seizures, it’s also about living with the fear of a seizure. In my case, I was having close to one grand mal a year, but there was an incessant fear of getting one at the wrong time, or what might happen as a result—falling and hitting my head, losing control of my bladder, experiencing it when no one was around. 

    There are also different kinds of seizures, beyond grand mal. I also suffer from myoclonic jerks, which are little interruptions in the brain—I always describe them as like matrix interruptions, when my hands will sort of jerk open. I also experience what’s known as an aura, which looks like I’m zoning out, but really it’s a type of seizure. Plus, people who are epileptic have photosensitivity, so I needed to be wary of bright flashing lights, to avoid triggering a seizure. 

    Each time I had a seizure, I felt like a piece of myself had been robbed in some way. Each one caused brain damage to some degree and, in my experience, a loss of confidence. It feels like your whole world has been turned upside down. It’s absolutely terrifying to wake up and see people above you, asking if you know who they are, and if you’re okay. In those moments, you have no idea what happened, apart from your pounding headache. 

    There are just so many layers to it that people who don’t have this condition may not consider. And, unfortunately, epilepsy comes with a horrible stigma, so I pretty much kept my invisible illness to myself for years. 

    Chelsea Leyland

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  • After Multiple Traumas, DBT Helped Me Take Back My Mental Health

    After Multiple Traumas, DBT Helped Me Take Back My Mental Health

    Flash forward to the beginning of college. I started my freshman year at UCLA in 2018, and I had never been more excited for anything in my life. Like most 18-year-olds, I thought it was a chance to reinvent myself and start over. However, one month after I started school, I was sexually assaulted, and it sent me into a deep spiral.

    Instead of reaching out for help, I isolated myself in my dorm room and refrained from telling anyone what had happened to me. Even though I was in such a negative headspace, I entered an unhealthy relationship that left me feeling more alone and ashamed than ever.

    All of this compacted on to the trauma I experienced when I was sick led to me self-harm and eventually attempt to take my own life. During this time, I was diagnosed with clinical depression, PTSD, and OCD. I began going to talk therapy regularly, but I needed more support than I was getting.

    This was when Dialectical Behavior Therapy, better known as DBT, was recommended to me. 

    I had no idea there were even multiple types of therapy before I started DBT. However, there are actually five unique categories of therapy recognized by the American Psychological Association: psychoanalysis, behavioral therapy, cognitive therapy, humanistic therapy, and integrative or holistic therapy.

    According to psychologist Lauren Kerwin, Ph.D., DBT is “a treatment that blends humanistic interpersonal systems, zen philosophy, and cognitive behavioral approaches into a coherent whole that helps clients not only survive but learn the skills necessary to build a life worth living.”

    In other words, DBT helps people learn new ways to manage their emotions rather than just talking about their experiences. It was helpful for me to learn about tangible skills I can actually use in my everyday life. 

    Caitlyn Somers

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  • My Chronic Stomach Aches Turned Out To Be This Autoimmune Disease

    My Chronic Stomach Aches Turned Out To Be This Autoimmune Disease

    The diagnosis brought some relief, but it took years to learn how to manage.

    Rosie White

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  • My MS Diagnosis Was Devastating — How I Found A New Normal

    My MS Diagnosis Was Devastating — How I Found A New Normal

    From there, I knew I had to get on the ball, and get my proper care team together. That included a good neurologist, a therapist, and a supportive community. 

    Truly, I can’t emphasize enough how important it is to surround yourself with a circle of friends and family who can be there through every step. When I was first diagnosed, my husband told me this isn’t just your disease, it’s our disease. This type of caring and compassion is how I’m able to get through the really tough times. 

    I also began incorporating healthy lifestyle practices into my routine, which I’ve kept up to this day. First and foremost, moving my body regularly is key—if I don’t, I feel like I get super stiff and my mental health isn’t where it should be. 

    As I progressed on this journey, I also discovered music therapy—which has been around for an extremely long time. I began doing this type of work through MS in Harmony. They have different educational modules on their website led by board-certified music therapists. These exercises are designed to help people with MS support brain function, and potentially mitigate physical and mental symptoms. I’ve found this type of therapy to be so powerful.

    Another thing I’ve had to learn is how important it is to be realistic about my bandwidth, and preserve my energy accordingly. 

    Courtney Platt

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  • Doctors Dismissed My Period Pain For Years — Until This Diagnosis

    Doctors Dismissed My Period Pain For Years — Until This Diagnosis

    Years later, when I was 27, the OB/GYN I’d been seeing said to me: You might have this condition called endometriosis. In order to diagnose it, the doctor said they’d need to do an invasive procedure called a laparoscoppy. It’s a keyhole surgery where doctors look for endometrial tissue on the exterior wall of the uterus, and remove any they find. The doctor thought I likely didn’t have it—but if I wanted to double-check, they could move forward.

    Lo and behold, I had the procedure, and I was diagnosed with endometriosis. 

    After the surgery, I experienced relief for about six months. But then the symptoms came back. Around the same time, I had begun experimenting with taking medical cannabis to help with my seizures. About a year into weaning off my epilepsy medication, I noticed some of my endometriosis pains were improving, as well. 

    So, I decided from that point to try to take things into my own hands a bit more, and test out how certain lifestyle interventions might impact my symptoms. I began to lean into acupuncture, herbs, and yoga. I also began using cannabinoids internally. As a result, I started to experience profound relief. 

    Now, I’d be lying if I said my symptoms completely vanished and I don’t have endometriosis anymore. But, I will say things have improved dramatically. If I was experiencing pain at a 10 before, I’m now closer to a 4—all thanks to natural interventions including nutrition, stress management, meditation, yoga, TCM, and using cannabis in many forms. I also learned so much about hormonal health, and how much my choices impacted my menstrual cycle. 

    It was actually that realization that was the catalyst for starting Looni, my menstrual health and wellness company.

    Chelsea Leyland

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  • It Took Years Of Feeling Burnt Out For Me To Reconsider My Goals

    It Took Years Of Feeling Burnt Out For Me To Reconsider My Goals

    To back up for a minute: I grew up in a South Asian American family with a super high-achieving home culture. My dad is a professor, so education has always been very important to him. There was always this sense of guilt constantly weighing on me about how my parents sacrificed everything to give me a better life. In fact, my mom got pregnant when she was in grad school, and she ended up dropping out so she could help make money to raise me. 

    With all of that in the back of my head, I ended up pursuing the “practical” fields of computer science and business. After graduating, I wound up taking a job in finance, and at a company with a super corporate, intense culture. I thought all of it was what I wanted. 

    This job ultimately led to the most traditional definition of burnout—I was working all the time, and it seriously impacted my physical health. However, this was in 2012, and no one talked about mental health or burnout culture. We didn’t even know what to label it. So I just experienced physiological fatigue and exhaustion, but I didn’t know how to channel it. I remember trying to journal about what was bothering me, what I needed to get done, or what was causing my anxious feelings. 

    And whenever I would start to notice those unsettling feelings creep in (usually every six to 12 months), I would just try to cover it with a bandaid solution and move along. Sometimes, I would pivot jobs, but that didn’t necessarily fix anything. With my computer science degree, I took several positions as a software engineer, as I was conditioned to believe in building a safety net. As a result, because I was living to achieve someone else’s dreams, burnout would creep back in.

    Then, I ended up moving to San Francisco to start a new job at a company that was about to go public. I was dating a new guy (spoiler alert: my now husband). On paper, it looked like my life was pretty incredible. However, I was still waking up feeling tired, even when I wasn’t working long days. I was also constantly unhappy, cranky, and negative—all the things you wouldn’t necessarily expect as a high-achieving woman whose life was checking all her own boxes.

    What I began to realize, however, was that I was chasing society’s definition of success—but not my own. I was living life on autopilot rather than one that aligned with my personal core values. It wasn’t just the amount of work that was causing my burnout; it was a lack of fulfillment in what I was doing every day, because I knew I wanted to be doing something else. 

    Meha Agrawal

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  • What I Want People To Know About Living With Bipolar Disorder

    What I Want People To Know About Living With Bipolar Disorder

    My mental health journey began when I was eleven years old. It was 1991, and Kurt Cobain hadn’t stepped up to the mic to sing “All Apologies” yet. He hadn’t smashed one guitar out of rage in public. Hadn’t yet dyed his hair purple in a fit of mania for all to see.

    At eleven years old I was supposed to be all bubblegum and board games. Riding my bike and laughing with friends.

    Instead, I spent most of my days stuck in some purgatory—caught between the rush of tween hormones and something that felt more sinister broiling beneath the surface.

    When a psychiatrist finally said the word “bipolar” to my mother and suggested a dose of lithium, she was terrified. Mental health was not a buzzword. There was a stigma attached to the diagnosis and an implication that my mother had done something wrong.

    So we moved on.

    We would keep moving on to new therapists throughout my teen years. Making attempts at talk therapy—only to discover that there were some secrets that my mother didn’t want to be disclosed. Trying different cocktails of medications. Maybe Zoloft. Maybe Ritalin. Maybe the new wonder drug at the time, Prozac.

    None of these worked. Everything just made my world more foggy and confusing.

    By the time I hit my “rebellious” teenage years, I was crawling out of my skin. I could not escape myself, so I started self-medicating. Weed and booze were my drugs of choice, and I spent a lot of time experimenting with different mixtures to see which one could take me the farthest outside of myself. Of course, this just made my mood swings more erratic and severe, and I pushed down my real emotions until I was a shell of myself.

    I rock-bottomed in my 20s. I vacillated between sorority president and black-out drunk. During my upswings, I was an A student, making the dean’s list and planning food drives for battered women’s shelters. In my downswings, I would binge drink and wake up on the floor of a frat house, wondering where my friends had gone and what I had done to make them leave me.

    Jessica Groff

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  • How I Finally Treated My Eating Disorder After Years Undetected

    How I Finally Treated My Eating Disorder After Years Undetected

    After starting college in 2010, the first group I interacted with was the cross country team. While the camaraderie was positive at first, there was a lot of toxic culture around food and body image. In fact, I remember the upperclassmen really emphasized the necessity of losing your period, and running so hard that it was inevitable. Having no other role models in the sport, I took to that goal, and made it one of my own moving forward. When I lost my period, I relished in that fact, rather than flagging it as a cause for concern.

    All of us had a drive to be thin—to reach performance goals, feel lighter during a race, or even slim down our bodies to look more like a competitor runner. What began as ambition very quickly became a disease.

    Everyone on the team was extremely anxious about food, myself included. I vividly remember the tension when meeting up with teammates at the dining hall. We would anxiously look at each other’s plates, which never had much on them—usually a light salad, even after running 10-plus miles that day. Everyone was so nervous about eating too much. No one wanted to be the odd one out, and that feeling was so visceral.

    There was also so much stigma around breakfast and eating before or during runs. We would never eat beforehand, and after a very long run, we would treat ourselves to a latte. Ultimately we ended up fasting most of the day, despite rigorous training.

    I internalized all of these ideas, and they grew tenfold in my own mind. The voice in my head would remind me: “you don’t need to eat that” or “you’ve been crushing it lately, but maybe if you lost a couple more pounds, you’d run even faster.” I truly believed that running extremely high mileage while eating very little was what it took to be a runner. 

    I was left with an extremely unhealthy body with no menstrual cycle, energy deficiency, and a lot of mental fog. I was fueled by my negative body image, and continued to move through unhealthy training.

    The problem was, I did start to see some early success in trail running, so I had no tangible reason to change my ways. After undergraduate, I decided to pursue running as a career, rather than go to medical school. While I continued to have success at the beginning, it quickly became a rollercoaster. I would have a stellar race, then crash and burn for a while. I was so in the weeds of being under fueled, undernourished, and overtrained—until my body finally started to break down.

    For a couple of years, I stayed broken. My body wasn’t functioning, my mind wasn’t functioning—and in 2016, I finally got to a point where I knew something had to change. Luckily for me, I also studied hormones and performance, so when I started to honestly look at the bigger picture of my health, I couldn’t deny how horribly I’d been treating my body. I needed to pivot if I wanted to stay in the sport and reach my potential, rather than continuing to underperform and just feel like a miserable human.

    Keely Henniger

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  • How A Pulmonary Embolism Forced Me To Reckon With My Health

    How A Pulmonary Embolism Forced Me To Reckon With My Health

    When I got to the ER, I learned that I had showers of clots in my lungs and was very lucky to be alive. It was the start of a long healing journey.

    It was a true invisible illness in that I looked fit and healthy on the outside, but on the inside I was struggling with the most fundamental element of life: breath. After my diagnosis, it was scary to ride the train on hot, crowded days when it was a struggle to breathe. I remember rushing to empty seats, sometimes beating out senior citizens, becuase I knew it would be easier to breathe when seated as opposed to standing.

    I also did not have any significant predispositions to clotting, especially the markers that they test for in pregnancy, when a woman is at an increased risk of a clot. I likely got the clot from being on birth control pills, which have been associated with an increased risk of clotting1.

    When I wrote an article about my pulmonary embolism on mindbodygreen, I heard from hundreds of women who had either personally experienced a clot on birth control or had a friend, sister, or cousin who had. Many times, the consequences were tragic. 

    I’m not against pharmaceuticals, but we do need to have more conversations about the risks involved. Nowadays, I am much more responsible about researching anything I put into my body.

    Colleen Wachob

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  • I Was Sick On And Off For Years — Until I Found This Routine

    I Was Sick On And Off For Years — Until I Found This Routine

    I spent my high school years living in Bangladesh. Even though it’s on the Eastern side of the world, in my experience, there was a pretty strong emphasis on allopathic, Western medicine. So any time I would see a doctor, I was given a course of antibiotics—but they never investigated the root cause.

    In addition to constantly getting sick, I also started developing skin conditions, like rosacea, which had never happened to me before. When I was going through skin issues, I actually traveled to Singapore and Thailand, to see a few more doctors, but they just gave me steroid cream for treatment. 

    None of the practitioners I saw suggested looking at my gut to see if it was having an impact on my skin or immune system. 

    Needless to say, my challenges continued into college. I even somehow got meningitis during my sophomore year, which is an incredibly rare infection. I also struggled with chronic UTIs during my entire college experience. 

    Through college, when something went wrong, I was either given antibiotics or pain medication. I actually became resistant to antibiotics while dealing with the UTIs. Ultimately, I never got any definitive answers, just bandaid solutions. 

    Right after starting my first job post-graduation, I was sent to the ER due to pain around my ribs. As it turned out, I’d actually fractured one of my ribs, as a result of a chronic cough that would not go away. 

    It was one thing after another, for such a long time. 

    Siffat Haider

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  • After Years Of Testing & No Diagnosis, This Is What's Helped Me Feel Better

    After Years Of Testing & No Diagnosis, This Is What's Helped Me Feel Better

    Years spent in and out of hospitals forced me to make some hard changes.

    Tegan Bukowski

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