My name is Kelly

I contracted Covid on Jan. 24th 2022. I was sick with active Covid symptoms for 14 days, then more debilitating symptoms followed as Covid became Long Covid. For me Covid never went away, the symptoms just changed slightly becoming chronic and disabling. I was an active wife, mom of 3 and Public School teacher before Long Covid. Over the past 2 years of battling Long I have been stripped of the happy, active life I had as it has been replaced with being partially bed bound, watching my health deteriorate at a rapid rate. From Covid 19 I am in heart failure, have a feeding tube for nutrition, a surgically implanted catheter and am permanently in a wheelchair full time, and fighting several other diagnosis as well. I am now trying to enjoy every moment I feel well, and am determined to never give up, and to always continue fighting.

My name is Peter

My name is Peter, “Seemingly, I’m one of the millions of very active people who have ended up with Long COVID.  Prior to catching COVID, I was running a marathon (more or less) every Saturday since the start of the pandemic two and a half years earlier. Now, ten months into Long COVID, walking any distance is a challenge and stairs are daunting.   I had significant side-effects from each dose of COVID vaccine, so I was a bit worried how sick I might be if I actually caught COVID. And I was right to be worried – when I did contract COVID in September 2022, I was very ill for quite a few days, including having a 40C fever for four days. I wasn’t hospitalized, but that was only because our hospitals were inundated with other COVID patients, and they couldn’t handle more people. I suspect my experience was worsened by getting a booster a couple of days after being exposed to the virus.   After a couple of weeks, I thought I should be over acute COVID, so I went for a 20km run even though I didn’t feel all that well yet. I was very in tune with my body from all that running and knew that my body wasn’t right: my muscles screamed from a lack of oxygen or energy or something. I kept giving it a bit more time between runs and each run became harder even though each one was shorter and each one would wipe me out more than the previous.   Long COVID didn’t even cross my mind until at least a month after having acute COVID. I didn’t fit the demographic: a fully vaccinated, healthy, white guy without any pre-existing conditions.  However, for the next three months, I got progressively worse week after week.   One symptom that has devastated me is fatigue. I hate the term though – I’ve been fatigued after long runs, but what those of us with Long COVID (and likely other illnesses like ME/CFS) suffer from is something orders of magnitude more impactful than anything you can do to your own body. An intake nurse for a Long COVID clinic suggested that I might just be tired because I was anemic. Wait, what?! That was such an infuriating suggestion! I knew she had never had Long COVID.  I think I convinced her that I actually had Long COVID and wasn’t just suffering from anemia after explaining that I had lost my senses of smell and taste a couple of weeks after my acute COVID infection and hadn’t regained them yet.   Long COVID is an infuriating illness: • it’s inconsistent – some people are asymptomatic, some people die, and everything in between; some people get better in a few days while others end up with Long COVID  • it’s invisible – many people, including too many medical professionals, don’t believe it exists; even those who do believe it exists have a hard time understanding the illness; people often only see Long COVID sufferers at their best • there are so many unknowns – there are no diagnostic tests; there are no treatments, just symptom management; there’s no consensus on what the virus does to our systems; there’s no timeline for recovering from Long COVID   From my male perspective: from the stories I’ve heard, I think I may be better believed than some women have been. But, I think I caused my system harm by trying to push through things after my acute infection – by toughing it out. I’ve had a very hard time coping with not being able to work, being so disabled, and not knowing if I’ll ever get better. I continue to try to act normally despite my persistent, unforgiving symptoms.

My name is Debbie

My name is Debbie, “Summer 2022 visiting granddaughter in CA for two weeks. Went to ER very ill one night. Family there was told I had Critical Covid and Double Pneumonia and they need to contact my family in Arkansas and tell them I most likely would not make it through the night. They called my family and also called and put me on EVERY PRAYER LIST they could find. When the pulmonologist NP / PA came in the next day to check on me, he DID NOT EXPECT ME TO STILL BE ALIVE. The whole first week was very “IFY”. Everyone was shocked I survived. It wasn’t until my 4th week in the hospital that I even KNEW WHAT WAS GOING ON OR WHERE I WAS. The doctor told me about the previous three weeks. He said I WAS A MIRACLE THAT I SHOULD NOT have survived through the ICU stage. Now, almost one year later, I am still here. I had several medical issues, but I survived, and thank God and ALL who prayed for me and ALL the medical technology that was also available to save my life. I DO NOT REMEMBER ANYTHING from the time they saw me in the ER I didn’t know who I was, where I was, I knew NOTHING. They originally thought I had a mini-stroke. I was out of it til the beginning of the 4th week. I never was intubated, but this breathing apparatus I was on for about five days is what they told me. There again, I remember NOTHING and NOBODY. The Monday of the 4th week, I was in a room with a roommate, FEEDING MYSELF, talking to my roommate Teresa and watching the Price is Right. They said I was awake some during the first three weeks off and on, but all I could do was look at them. I did not/ could not respond. I struggle to this day a year later with breathing (still on oxygen almost 24/7), chronic fatigue (I had to use a walker the first month or so after leaving the hospital), and still have brain fog. I don’t drive. My hubby is my chauffeur. There are times I am so tired of hurting and needing help (I used to work and be so independent), tired of being tired and forgetting what I am in the middle of saying… Just lose my train of thought. I have accepted this is my NEW NORMAL I just don’t like it.”

My name is Jennifer

“A person hailed as “healed” is declared a phoenix, rising from the ashes. This expression is deceiving, for one’s healing is never over. It’s easy to think that way since the mythical bird expression is spoken without much thought to its meaning. A magnificent bird set on fire, rebirthing into the world brand new, forgetting everything it knows. The brutal symbolism of the phoenix has been my map to reconcile Long Haul Covid. On Tuesday, April 21, 2020, I was in a tent when I heard strange words come out of a doctor’s bodysuit, “You have coronavirus”. The doctor’s words struck a match that sparked cycles. Cycles have no order, only chaos. They hoop you in, forcing you to be. I was to be sick with an unknown virus the world was not prepared for. I was to be hidden away for the safety of others. I was to be hopeful that my body would bounce back from an unknown entity. I am to be in the long haul. I do not want to be in the long haul. I went through cycles of anger, denial, and avoidance to disguise the long haul. I don’t want to accept Long Haul because that means I have to permanently measure time with rings of fire, instead of clocks. Rings of fire bursts your life away from you, deceiving you, enclosing you in, while everyone else is free, unborn. These cycles happen simultaneously. All are felt on the inside, but nowhere to be seen on the outside. How exhausting for the phoenix to constantly be on fire. How many feathers can the phoenix wear, only for them to molt? How often is the phoenix isolated by other birds, since the phoenix’s cycle is unique to itself? How can the phoenix thrive, knowing that the version of oneself will be lost. Perhaps that’s the wisdom of the phoenix; you cannot do whatever you want, in a world where you can do whatever you want in. The bird senses that flying away from the fire is useless. The phoenix must rise from the ashes, and accept its own fate. Long Haul Covid is the oxygen to my fire, fueling my inflammation, heated by the virus. I’ve been tossed into this fire, forced to burn what I know. When I ignite new knowledge, that knowledge is set ablaze, forcing me to start the process all over. Now it’s time to accept my fate, and use chemistry to burn the promise of going back to the last version. A version when I was 23, unfamiliar with coronavirus, and ignorant of cycles being inextinguishable. I’m ready to take my ashes and strike the match myself. Let my feathers be brilliant along the flames as I ignite my own cycle of acceptance. Though I can’t change that I have Long Covid, I will extend my wingspan, and fly into my next cycle, the way the phoenix has done for millennium.”

My name is Rayna

My name is Heather

I contracted covid in July 2022. The infection itself was not horrible, just a lot of fatigue mostly and lasted about a week. I was fine the entire month of August. The very last week of August, I started experiencing presyncope every time I tried to sit to eat, specifically when in restaurants or around other people. I had to leave the situation and go lie down. I had a virtual doctor visit and they told me it sounded like vasovagal. My old PCP ran the standard blood test and said I was fine. But I continued to get worse and started having symptoms just sitting at my desk working (I work remote) or having my daily cup of coffee. I couldn’t do dishes. I couldn’t work out anymore. I couldn’t drive. In October, after a few sips of coffee, I felt so bad and was so scared that I had my husband take me to the Urgent Care. I couldn’t lift my head. I just kept leaning over, holding my head and rubbing it with my hands, and my whole body was shaking. They checked my BP and checked for POTS and couldn’t find anything. They did mention I was slightly anemic, so I immediately bought some iron. Shortly after that, my friend’s sister-in-law mentioned that she had had the exact same symptoms I was having and that it started after she had covid. Everything clicked. I went on Reddit and saw thousands of people experiencing what I was experiencing. I felt seen. I also realized that sugar was triggering me and that covid can cause glucose intolerance or insulin resistance. I started taking B12, vitamin C, D3, oregano, and turmeric (some I had already been taking but I upped my dosage), and completely cut out sugar, alcohol, and coffee. Saying goodbye to coffee was very difficult for me. I started indoor biking based on my friend’s sister-in-law’s recommendation. Most of her symptoms disappeared after 8 months. I scheduled an appointment with a new PCP and he ran extensive blood work. With that, I discovered I had low B12 and an autoimmune disease called Sjogren’s Syndrome. But the autoimmune still didn’t explain all of my symptoms. I went to multiple specialists including a neurologist, cardiologist, pulmonologist, rheumatologist, and psychologist. Neurology didn’t find anything. Cardiology only found a little extra fluid around my heart and said it would go away with time. They could never explain my feeling of palpitations, feeling of heart stopping, low BP, gasping for air, or inability to yawn. They basically said “you have a healthy heart for your age” and sent me on my way. Which is good news, right? But also frustrating when you have unexplained symptoms. Psychology said I had some anxiety but that it wasn’t the core of my issues. I started seeing a therapist which helped a little. But I stood by the fact that I had had anxiety my entire life and it never felt this way. Someone on Reddit described it well. They said it was as if they were experiencing the physical symptoms of anxiety without reason or without feeling anxious mentally. That was exactly it. I grew really tired of everyone saying I was just anxious or depressed. I didn’t stop researching. I was missing a lot of work and my PTO had run out. Thank God for my husband and his job. Fast forward to May 2023. I was flipping back through my bloodwork from November and noticed something on the Lupus panel. Something was three times the amount it should be. I looked it up. I found I had a 90% chance that I had pernicious anemia. This means that your body cannot absorb B12, even sublingually, which I had been taking. You have to have shots for the rest of your life. Without B12, your body cannot make new red blood cells. Without B12, you can die. And no one said anything about this. I was upset. I was happy. I was all the things. I called my PCP. He admitted that he didn’t know enough about it and sent me to a hematologist. I was so excited for the appointment. The first thing the doctor said to me was, “You don’t have it.” He didn’t even listen to me. I had done my research and knew that I could have it even if my anemia labs looked fine. I left defeated. He told me to see my rheumatologist. I went back to her. She said I needed to see a hematologist, but ran some additional tests for me that I requested, including D, B6, anemia panel, and potassium (all I learned I needed to check). I was beyond frustrated and went to get a B12 shot anyway. Then I went to a different hematologist to get a second opinion. What a difference. He told me I had it. I felt relieved, but also… numb. It felt surreal. The other lab results came back and I was deficient in D and high in B6 (can be toxic). I added K2 to my D3 and cut out any B6. I know there are many things I have left out of my story. It’s so hard to remember everything. I believe covid wreaked havoc on my body and wiped out my B12 and D, and awakened or worsened these autoimmune issues. It’s been almost 2 months of twice weekly B12 shots. It has made such a difference. I have been able to be a little more social. The symptoms are usually there right at first but then die down. I can drive short distances by myself. I have eaten at restaurants a few times as long as I’m not in the center of the room. Next, I’m going to try walking at the gym. I see the light at the end of the tunnel. Through all of this, God and my husband and my mom are the ones that have kept me going. I have prayed throughout this whole ordeal. I have worked on my faith. I know there is a reason for this and that it can be used for good. I am looking forward to being myself again!

My name is Angela

My name is Angela, “There is no time nor enough words in this world to describe the crippling agony this condition has caused me. It’s a painful mourning of my old self. It is as if a tsunami has come in and taken everything away without warning. A shock to my system and most certainly a wakeup call that will leave me to fight my way out of the water alone. I am drowning in fear, debt, anguish, and sadly the constant urge to give up. I was a yoga instructor and I was an avid flow arts connoisseur. Someone that loved nature and constantly moving through the motions of, “what can I accomplish next”? I was vibrant and a fluent multi-tasker with robust goals. This came to a screeching halt when I couldn’t even hold food on my fork. I wasn’t able to walk or see straight. I was living in a constant state of feeling drugged. I incurred more than forty symptoms which were all presenting as rare or very rare. I had never felt such fear in my life! Every doctor and person I knew told me I needed therapy and it was all in my head. I felt utterly alone. This battle has been ongoing for almost two years, and the truth of it is, I don’t know who I am anymore. I have never missed anyone as much as I miss myself. I spent all this time and money searching for any bit of hope there is. Seeking the guidance of numerous doctors, naturopaths, healers, and I have thrown every protocol and test at this beast known to man. I have done things others would not understand. There has been little to no support, no answers and no help. Most of those willing to assist are only trying to profit off of my debility. The diagnoses that I did finally acquire are none to be proud of and will forever change how I live. Although this time has given me the ability to empower myself and support those that are also dealing with this hell, I will forever feel burdened. I do not know what the future holds for myself and others suffering from long covid, but we must continue telling our stories. And even though the light I see is oceans away, I will continue to swim towards it and I hope to be the hero at the end of this.”

My name is Clare

My name is Corinne

I caught my first and only Covid infection July 2022 and although I had mild symptoms for 5 days I decided to to go back to work and life. Two weeks after I crashed extremely hard with shortness of breath,heart palpitations and severe inflammation for months. When that subsided the virus attacked my microbiome and left me bedridden for quite some time. Today I still deal with gut issues, autonomic nerve issues in my back and waste, twitching skin, anxiety, depression and have lost so much to this illness. I have to pace daily and rest and eat differently and have lost so much weight. I try to stay hopeful that this will eventually go away. Long Covid is a beast that I wouldn’t wish on my worst enemy.

My name is Kathleen

Went to bed March 11, 2020 with a scratchy throat and woke up on March 12 with a fever. Couldn’t get a test. Also never fully recovered from a so-called “mild” case. Was sent home from the ER. Told my husband I refused to go back. Worked 1/2 time for 6 months burning up accumulated leave time, then went on partial long term disability for a year. Eventually returned to work full time, but all the other things I used to have energy for, like running, are in the past. Still living with symptoms, lots of testing, not much treatment. Tested positive in October 2023, a couple weeks later had a breakdown resulting in an extended leave from work. I’m on my third week back. Covid has stolen part of my life, and I am figuring out how to rebuild with the bricks I have left. I also recognize how fortunate I am to have the support of family, friends, colleagues and an understanding employer. I remain angry at public health and elected officials for collectively failing so many of us.

My name is Lawanda

I am from Manchester, CT. I would like to share some of my experience dealing with Long Covid. I tested positive for the second time in July of 2022 with a mild infection recovered fully within 2 weeks , 3 weeks forward I started experiencing pain throughout my body along with tremors and rapid heartbeat that sent me to the ER. A month later bed bound had to take a leave of absence from work , multiple ER visits and testing which were all normal my world was shattered and I was in a very dark place. In March of 2023 I took charge and began getting furious with doctors the medical system is damaged I went a different route and began looking into holistic treatment which may have helped just a little. I have came a long way compared to 2022 I still have a long way to go it is now 2024 I still have sob along with chest pain and occasional rapid heartbeat, neurological symptoms. About 30 percent of my symptoms have resolved and I started going back to the gym this month. I take it day by day and I will not let this demon win and take over my life.

My name is Stacey

My name is Stacey, “I woke up November 4th 2020 like any other day, still cleaning up from the Halloween party we had had the weekend before. As I went to use the restroom all of a sudden I got this headache from hell. I have never felt such pain and thought I might be having an aneurysm. I screamed out to my husband call 911, call 911. He came running and saw me holding my head laying on the floor and throwing up. The ambulance arrived and immediately asked me questions to see if I was having a stroke. I was able to answer, but still screaming in pain, please help me!! They of course took my blood pressure which was an alarming 203/118. That is when they rushed me to the hospital. The ER gave me a mocktail intervenous for the migraine and we proceeded to do several tests. I had a CAT scan done on my head and some bloodwork, but nothing came back to serious, so was sent back home. Later that evening, the same headache happened again and I yelled to my husband call 911!  He wanted to just drive me, but for some reason I didn’t think I was gonna make it and yelled for him to call the ambulance. They came again & rushed me back to ER. They kept me overnight with several more tests, including a spinal tap. Living up in the San Bernardino, California mountains the small hospital did not have an MRI machine, so was unable to check for anything in my head. They finally gave me some prednisone and sent me home. Two days later, the same thing happened and my husband rushed me back to ER. They finally gave me a Covid test, which came back positive. The headaches were so terrible which I now know to be thunderclap headaches. The worst headache of your life. My husband was not satisfied, so drove me down the mountain to a bigger hospital. As we were right in the middle of the Covid19 pandemic, there were tents set up outside & hundreds of people lined up around the ER room. I didn’t know how I was going to be able to go in there and sit but knew I had to find out what was going on. As we sat in the waiting room for 12 hours I really didn’t know what to expect. Looking around at all the sick people was so terrifying, but my heart went out to everyone, They finally took me in and gave me an MRI. It wasn’t long after that they told me I had had a stroke, probably due to the high blood pressure from Covid. I was very lucky that it didn’t do any permanent damage or so I thought. I went home and spent 54 days in bed with my husband trying and buying everything and anything he could to ease my pain. Christmas Eve day I woke up and the headache was gone. I couldn’t believe it. It was a Christmas miracle. Fast forward to now 2024. It has been a rough road the fatigue, the joint pain, the migraines, the nausea, the insomnia, the feeling like I have the flu constantly is very different than what I was used to. I was calling in sick more often & now unable to work. I wasn’t able to go out with my friends on the weekends and vacations with my husband are short, and usually end up in the hospital wherever we go My whole life has changed. I have seen several different doctors & have been diagnosed with several autoimmune disorders I’ve been on every medication some helped & some did not. I have had Covid three separate times. Even though I was vaccinated and the last time I tested positive for six months straight. I am still working with different doctors some who believe the long Covid symptoms and the ones that don’t I move on. I don’t know if I will ever be the same person, so I have mourned the person I was and I’m learning to live with the person I am. My prayers go out to anyone and everyone that has lost someone to Covid, went through Covid, or are experiencing long-haul Covid now. We have a long way to go, but together we can do this! New Me   I lay here daily in my bed outside the world goes by   Not sure how all this came to be, only God knows why.   I try my best to push myself when I am feeling ill   but sometimes it just can’t be fixed by taking a small pill    The good days,  well let’s just say,  there far and few between   But the ones that get me out of bed the world to me they mean   I mourn the life that I once had & do it just because    I know I don’t deserve this I mean who really does?   They say it makes you stronger & who is they you say?   All the many Drs that try to make it go away    Although I know deep in my heart I’m going to be alright   This awful Covid illness I will forever have to fight.    But I’ve been known to not give up, & so this life a new   I’ll learn to love myself again & that’s exactly what I’ll do.”

My name is Grace

I have been sick since I got Covid in 2020. I am not diagnosed with lupus, dysautonomia, gastroparesis, and a non specific blood disorder. It has stopped me from riding horses, teaching/working, and living a normal life. I have many symptoms but one of my most puzzling and debilitating is a daily fever.

My name is Erica

“I am a mom and wife, a computer nerd and designer, an animal lover, star watcher, and most recently, a Long Covid advocate. In late 2020, I was 36 years old and my family of four caught covid. Before covid, my family was always on the go. I worked at a fast paced job in technology and was doing extremely well in my career. My youngest son spent over 40 hours a week in daycare. Spring through fall we ate more meals at the little league fields than at home. My 13 year old’s feet were suddenly as big as mine. Swim lessons, t-ball and baseball, camping, canoeing, birthday parties, sleep overs, hack-a-thons, conferences, company travel, social lives. Life was moving so fast. And then it all just came to a halt. Despite our best efforts, our family still caught covid early on, either from a masked trip to the museum or through my husband’s work at a hospital. Testing appointments were hard to obtain and the tests themselves were not very reliable. Eventually my family tested positive and we had all lost our sense of taste and smell. My 5 year old was outraged that the grocery store had messed up ALL of his food and juice! Oddly enough, my acute infection was largely uneventful. I can tell you, having had a baby in daycare, I had viruses lay me out 10000x worse and I didn’t even have to miss a day of work since I was remote then. I remember feeling so much relief that we were okay! No hospital needed, no one died, and now we would have immunity, right? On day 14 I started folding laundry and after just one towel, the act of lifting my arms made me so exhausted and unwell that I needed to go lay down. And as soon as I stood up I realized I was extremely lightheaded. From there on out, I had all of the symptoms that I now know are so common with post-viral illness: heart palpitations, dizziness, hives, wheezing and rashes. Convinced I was having some type of heart problem, I went to the emergency room double masked. The nurse noted my abnormal heart responses from laying, to sitting, and standing. But in the end, they gave me IV fluids and told me this was just a reaction to being sick and that my ECG and bloodwork was normal and I would be okay. As you could have guessed, for whatever reason, covid mostly impacted my immune and neurological systems and as time went on I wasn’t getting any better. I started seeing specialists and running tests. Though my doctors didn’t know why my body was reacting in such an extreme way, my story is unique in that none of my doctors dismissed me or suggested that what I was experiencing was the product of anxiety. I was lucky. I was also lucky that my career in technology prepared me as a professional googler. I eventually connected the dots to what seemed to be Dysautonomia and Mast Cell Activation Syndrome—two illnesses that can take years to get testing and diagnosis took me only a few months because I found the local experts to see. My allergy symptoms and inflammation was recognized as probable Mast Cell Activation Syndrome and treated at month three. At month four, I did a test to see why I had palpitations and dizziness when standing, known as a tilt table test. I failed the test within the first 10 minutes when my blood pressure had dropped substantially enough to make me black out and start to faint. I was diagnosed with Orthostatic Hypotension, which is similar to POTS but with blood pressure involvement as well. As I mentioned, I am lucky to have figured these things out so quickly, but to that point the diagnosis got me nothing more than antihistamines, compression socks, and a free pass to salt the living shit out of all of my food. Which honestly I was already doing naturally because my taste had not fully returned yet on month four. Next comes the piece of my story that is much less fortunate. I was referred to the Long Covid Clinic and prescribed physical therapy for exercise intolerance. I loved my doctor and physical therapist, both of whom had demonstrated compassionate care for me. But they just didn’t know much about post-viral illness yet. And did not know that exercise could ever make a patient’s condition worse long term or even permanently. Over a three month period, despite getting sicker and developing new and scarier symptoms, I tried to stick with the TINIEST bit of a weekly cardio workout. I had developed an on-and-off tremor, problems with grip, my balance was way off, my headaches worsened, and I started having cognitive issues and memory loss. I was on the floor of local stores and doctors offices when my blood pressure would suddenly drop with little to no warning. I was forgetting the names of people I knew well and names for everyday objects. I suddenly had problems walking around my house because I couldn’t maintain a normal blood pressure some days when upright. If my blood pressure was okay, my heart rate was through the roof just from standing. I had difficulty speaking and thinking. My condition deteriorated so much that I was forced to take a leave from my job exactly one year after my initial covid infection. It felt like a Hail Mary, I would rest and recover. But instead 2 weeks turned into 6 weeks, which turned into 3 months, and then 6 months. Before I knew it, I was told that if I couldn’t come back to work then I had to apply for long term disability. I again want to nod to my luck that I even had a long term disability plan. Many people do not and then are left with no income in a very scary situation. It was during my sharp decline in 2021 that I heard about Myalgic Encephalomyelitis, also known as chronic fatigue syndrome, and shortened to ME/CFS. Because of the name “chronic fatigue”, I hadn’t paid too much attention to mentions of the illness. Sure I was tired, but more so it felt like I was dying. I was being tested for serious illnesses like Addison’s Disease and Multiple Sclerosis. My illness is more severe than something that is named “chronic fatigue syndrome,” surely? But when I reviewed the criteria for diagnosis, I was shocked to learn that most people are triggered by an infection, and experience Orthostatic Intolerance or Dysautonomia as a key symptom. I had been visiting specialists for months trying to find an underlying cause of my blood pressure drops, and realized that maybe it was part of this larger, under-diagnosed disease, ME/CFS. To make the situation more astonishing, physical exercise programs that were based on increasing the time and intensity of sessions had been proven to make most people with ME/CFS much worse, sometimes permanently. I was horrified and furious and by this point was prescribed a mobility scooter so that I could still go places without fainting, but that would take 7 months to receive. The first year that I was not working I spent a lot of time grieving. None of my local doctors could tell me that the future would look like. When I brought up ME/CFS to the Long Covid Clinic, my doctor was honest with me that they didn’t know much about it and had to google. We ran through the criteria and she agreed I should probably try to see one of the experts listed on the CDC website. The list was short and the closest one to home was a 6 hour drive and not covered by insurance. I have experienced many ups-and-downs along the way and surprising additional diagnoses like Ehlers Danlos Syndrome, Chiari Malformation 1, and other brain and spine abnormalities. I have spent periods of time mostly bedbound, sensitive to light and sound and forced to lay flat in a dark and quiet room. I wasn’t aware that there was the possibility of being so ill that going to the hospital could make me worse just from all of the sensory input and interactions weighing on your nervous system. We desperately need education on post viral illnesses like mine for our medical professionals so that we can be treated safely and effectively. Since becoming sick I have done everything that I can to learn about my conditions. I wouldn’t have made it this far if it wasn’t for the community of those living with Long Covid, ME/CFS, and other chronic conditions supporting and guiding me. I no longer am winning hack-a-thons like the nerdy badass I once was, but I find some fulfillment in connecting with the community and trying to help people like me on their path. I participate in online advocacy and tell my story whenever I can. I speak with government officials, send emails, and leave voicemails. It’s been extremely difficult to respect my own limitations while I try to find effective treatments. Some things have helped, and some things have made me worse. I am a combination of hopeful, devastated, grateful, and scared, that is hard to express. I hope this book can help others who are also dealing with these challenges. You’re not alone. We’re in this together.” Connect with Erica @EricaAdvocating on tiktok & instagram.

My name is Rosemarie

“I could feel the raindrops make their way through the car window, gently soothing my lethargic body in the back seat. Each breath sucked my energy. Extreme hot flashes came and went, my vision looked like the static of an old TV, a metal taste at the tip of my tongue, this powerful pressure sitting in the front of my head, my heart racing yet randomly pounding, nausea, constantly feeling on the verge of blackout. Words faintly escaped my mouth as I heard car doors slam nearby. No one heard me. I was terrified. I had noticed a lesser version of these symptoms the past couple attempts to hike Sequoia as I entered any elevation above 2500 feet. They would dissipate quite quickly once down in the foothills, but this strange phenomenon would leave muscles throughout my body completely weakened for hours… sometimes days. It didn’t make sense. A few months before, I had hiked at 10,000 feet in a snowstorm no problem. I had never experienced elevation sickness in my life. These symptoms continued at sea level during workouts and certain movements. What changed? Covid. My safe space, my most effective coping tool, my respite, my love, my mountains, were stripped of me. I was no stranger to chronic illness and the continuous cycles of grief and acceptance one has to navigate each day. I had learned to embrace the detours after experiencing delayed and misdiagnosis, shame, pain, fear, isolation, physician and appointment anxiety, and treatment roulette. Endometriosis, adenomyosis, and PCOS destroyed organs and left me with 34 scars from 13 surgeries. Yet no matter how sick I was or how much pain I was in, I could always rest in the mountains. Whether challenged on a trail or driving to a summit to watch the sunset, this was a space where joy and struggle coexisted with ease. Today? A space of longing, frustration, fear. The bittersweet is a sacred intersection. Without it we are hungrily searching for, instead of being present in. I was gutted with grief after Sequoia. Learning to befriend the havoc long covid wrought on my body has been an excruciating path and an exquisite reminder. A broken heart is an open heart if we let it. Each day I experience that rhythm of grief and acceptance, while my heart remains shattered. And with these truths I keep an open heart – cultivating greater self-awareness and compassion, extending support and guidance to newcomers navigating this existence with illness, and learning from more brave and remarkable humans than I ever imagined. I am settling into the discomfort one moment at a time. Some days still feel like mere existence, but many are in a state of poignancy calling me deeper into strength and resilience. For now, this is my life well-loved.” Learn more about Rosemarie and her organization: (The goal of a life well-loved is to erode ableism by empowering people to lead their fullest lives regardless of background, ability, or identity. We host an inclusive online learning space with resources that help nurture well-being and hone skills of resilience: curiosity, empathy, compassion, connection. Discover your life well-loved here: https://alifewell-loved.org) Connect with Rosemarie at the link above or at www.rosemariephilip.com

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My name is Mindy

My name is Grace

My name is Brandy

My name is Trina

“I was advised by 3 different doctors not to take the COVID vaccine, based on my medical history and reactions to pharmaceuticals. However, I live in a state where vaccines were mandated-it was either take the vax or find another career. I loved my 20 year career as a message therapist. It was truly my calling. So, my compromise was to listen to my doctors “wait for Novavax to come out, its the best option for you.” It was due to be out in the states in November 2021, so just a few months behind the main vaccines that debuted in the spring of 2021. Novavax wasn’t released in the states until August 2022. While waiting for my turn in line, I was belittled, ridiculed, shamed, harassed, and thrown out of medial appointments based solely on my vaccine statues, despite having documented medical exemption. I lost quite a few people to COVID, including my father, who died out of state so I was unable to attend services. My message therapy practice also suffered, as people were just not interested in hearing my reasoning why someone couldn’t be vaccinated – even though I was following my doctors advice. Finally, Novavax debuted. I thought I could rebuild my award-winning business and get on with my life. I was so wrong. About one month after receiving my 2nd vaccine, my legs started having issues. Things got much worse, despite my best efforts. My neurologist was the one who told me I have symptoms of long haul COVID, despite never having COVID. The county where I live was drastic in attempts to control exposure to the virus, so if you wanted to go anywhere within the county you either had to have a vax card or a recent (with 48 hours) PCR test, so I had several PCR tests 2-3 times weekly for quite a few months. Never one positive. I also donated blood regularly during that time and the blood banks checked for past infections- never one positive. Plenty of home tests- never on positive. I have long haul COVID and never had COVID. 4 doctors have diagnosed me as vaccine injured. As of late spring 2023, I’ve been confined to my bed, and my symptoms are getting worse. I’m in the rabbit hole of medical testing- I joke that I should have a punch card at the imaging center. I’ve had so many MRIs, CT scans, X-rays, etc. I’ve had so many blood draws I’m surprised I have any blood left. My life is just waiting-waiting for this , specialist, for this test, fighting with insurance, etc. I use to be very active- I practiced martial arts 10-20 hours per week, did yoga and Pilates, all while maintaining a successful solo massage practice. Now I can’t even sit at my own sofa because I can’t sit up for more then 10 minutes. I use a walker to get around, and no longer drive. I feel like collateral damage.”

My name is Jessica

My name is Jessica, “I tested positive at work on September 29th. I am a Physical Therapist Assistant. I was working full time at a long term care facility in Texas. I’ve lived since getting Covid in 2020 with:  Nerve pain throughout my entire body No taste  No smell  Burning mouth  Sensitive teeth  Losing a lot of hair Weakness  Increased anxiety  Migraines  Dizziness  Blurry vision  Unable to eat meat, onion, garlic, gluten, tomatoes,  Increased fatigue with ADL’s  Decreased grip strength Decreased balance along with falls  Reddening of my skin along with swelling  I’ve seen several doctors and they have no answers except “we don’t know enough about Covid.”  It’s completely changed my life. I can’t work full time anymore. Which impacted my family.” 

My name is Courtney

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My name is Sara

My name is Sara, “I was extremely careful from the beginning of the pandemic with limiting my time in public spaces and masking when around other people. I was exposed to coronavirus for a 45-minute time period wearing an N95 mask but no eye protection in November 2020. I remember lying in bed during the acute stage of the virus before I got my PCR test results back and thinking “I hope it is Covid so I can get it over it and have natural immunity.” I had no idea how substantial the impact of Covid was going to have on my body and mind. Throughout the last two and a half years, I’ve experienced the following symptoms: chronic fatigue, intolerance of physical activity, post-exertional malaise, tachycardia including postural orthostatic tachycardia, shortness of breath, dizziness and nausea, loss of smell, excessive sleeping, brain fog (loss of concentration, trouble with multistep tasks, word recall, and memory), trouble with emotional regulation, chronic tension headaches, chest pain, temperature regulation, hair loss, and brittle nails. Experiencing these symptoms was a shock to me as at the time of getting Covid, I was 29 years old with no pre existing conditions and was a fitness instructor. Now, in July 2023, I see vast improvements reflecting on how I was functioning in the beginning of having long Covid. Still, I see how far away I am from my pre-Covid self. I am lucky that I am capable of holding a job in my specialty and can now rally for higher-exertion activities. While I can do those things, there are still adaptations and support that I need. When I am working, I need my parents’ support including cooking, dishes, laundry, and cleaning. I have improved tolerance for exercise when in the water or seated, but still cannot teach or take a full fitness class. I have found a wonderful group of people who also have long Covid through social media that share information and support each other. I have learned so much through my care team and research. I look at my experience of having long Covid as a challenge but also look at the silver lining.”