My name is Sarah. I am a solo mother to a beautiful five-year-old named Ensley! I’m not quite sure where to begin, but my world abruptly changed post-COVID-infection: January 7th of 2024. I can’t say for the worst or the best. I’m learning to mend as I move forward with the diagnoses I have received shortly after falling ill after my 30th birthday. What a time to be alive! A time to thrive and enjoy your prime! I remember my last healthy day all too well. It replays in my mind often. I would give anything to be a healthy normal young woman again. I remember a few of my friends invited me out to the sunflower field for my birthday celebration! We had fresh blueberry margaritas, took pictures, got to cut and handpick home grown sunflowers, and enjoyed delicious food vendors on the farm! Afterward we went for pedicures, and unknowingly they surprised me at the end of the evening with all my old coworkers and delicious birthday cake at one of my favorite craft beer bars. It was an amazing day and such a joy-filled time. I had recently started working for a boutique as a full-time pet stylist. This was my passion! Working with dogs has always been something I have wanted to pursue since I was a little girl. I fell in love and enjoyed this career for ten years. I learned a lot and my skills were unmatched! I devoted my time outside of being a mother to learning all I could, investing wisely and building relationships in hopes of someday starting my own grooming business. That was the dream I envisioned for myself! Looking back to a year and half ago when I became suddenly ill, I experienced symptoms of what I now know was POTS (Postural Orthostatic Tachycardia Syndrome) on my birthday at that time I was not diagnosed but I briefly remember feeling off and feeling like I would faint after walking to the sunflower field in the heat. At that time, I just chalked it up to big life changes and the hustle and bustle of being a mother to a toddler.
Fast forward to the weekend after my birthday, I remember waking up with a resting heart rate of 165, intense sweating, extreme nausea, all over body tremors, stomach pain, low-grade fever, vertigo that was so intense I could not stand up straight. I thought, “Wow I must have a stomach bug,” and continued to brush the symptoms off. I remember calling out of work for a couple days to rest. The symptoms seemed to subside a little, but I lost my appetite for nearly 3 weeks. I couldn’t keep any food down, couldn’t stand up without my entire body collapsing. Continually I started to blackout and pass out in the shower. My muscles felt as if someone had plowed over me with a dump truck five times over and over. I was falling asleep sitting up and felt lethargic.
At the time I called my mom and told her I needed to seek a doctor’s care. During these episodes, I would feel a sense of impending doom; it felt like anxiety and panic attacks. I would get them driving down the road, trying to perform at work, in the shower, after eating foods, or just doing bare-minimum activities like watching TV or watering the flowers in my yard. I ended up bed-bound for nearly 3 months because of this. I fought like hell to find a small ounce of normalcy while feeling like I was intensely ill. I made an appointment with my PCP to which I fainted after walking into her office. At this point I couldn’t stand upright without an extremely high heart rate, and odd blood pressure. She escorted me urgently to the ER once my vitals were read. She asked me how I felt, and I remember not being able to speak. She thought I was having a stroke or a possible heart attack at 30 years old. I was rushed into do scans such as CT, MRI to check for bleeding in the brain or signs of a stroke. They also checked my blood for infection and levels for heart attack. In my mind it was a blur. I felt so incredibly sick I had to stop working. I remember going to the ER and they ran multiple tests and diagnosed me with severe anxiety not once but 5 times. None of it made sense to me because I’ve always been a laid-back individual. I was at a happy point in my life and successful. I got told to take Xanax and Prozac. I was discharged and I knew in my heart there was something more going on as I started the medications and became sicker. I made it for three days and landed back into the ER department via ambulance ride. I begged my mom to call them because my blackout episodes were intense. I would often lose my hearing and end up collapsing to the floor. I did this multiple times during these flares and/or episodes because each time I felt like I was going to die. I remember sitting in the ER bed with a pulse of 163 and the doctor told me to “just breathe” – I couldn’t. I felt terrified, worried, and as if I was having a possible heart attack. Again, I was told I need to seek therapy for this issue.
I attempted to reach a therapist, and these episodes turned into something that were happening 5-15 times a day. At one point the therapist was just laughing at my struggles. I stopped going because I was getting worse. I would pass out in my daughter’s school parking lot upon pick up, or forget where I was driving to after what felt like intense brain fog. It was as if I was living in a nightmare. I ended up going to a stroke/heart trauma hospital and was originally misdiagnosed with Wolff-Parkinson-White Syndrome. After five days in ICU, I remember crying and sitting alone while Googling my symptoms because I was so scared. These attacks were nothing like an anxiety attack. As someone who is not an anxious person, I still couldn’t understand what was physiologically happening inside my body. I’m a firm believer in everything happening for a reason. A cardiologist did an echocardiogram on my heart which came back beautifully! I was puzzled, confused, and at one point I felt insane. Was I really losing my mind at 30? This can’t be a new normal for my daily life. I can’t live with constant blackouts, fainting, extremely high heart rate, stroke-level blood pressure, and then abnormally low blood pressure. Where is my future going? How can I continue to be a present mother while experiencing all these odd symptoms at random?
These were the main symptoms, but I’ve learned this syndrome is now so much more than just that. A person with this condition can be affected in nearly every body organ inside the body due to dysfunction with the nerves, and a lack of blood flow. This includes gastrointestinal, neurological, cardiovascular, bladder symptoms etc. The cardiologist came into the room and said “I think you have a syndrome called POTS.” I had never heard of this syndrome before, so automatically I asked, “What exactly is that? Is it fatal? Is there a cure? These everyday symptoms are debilitating to live with. I can’t function. I can’t work. At one point my memory was so bad I forgot how to groom dogs. I couldn’t remember my blade lengths, dog breeds, or guard comb lengths, and forgot my clients that I had cared for nearly 8 years. It was bad and intense. I still struggle with bad days and memory issues. Every time I stand up, I instantly feel intensely sick.”
He said, “Well it’s a syndrome, it will not go away, but there are certain things you can try to adjust your life to it to help ease symptoms.” In that moment I knew I was strapped into the rollercoaster and my journey began. I remember getting discharged and my mom having to shower me, and pick me up multiple times off the floor. She would cry and get angry because even then she didn’t quite understand what was happening to me. I didn’t understand it either until I educated myself and joined a support group on social media. I’ve done my share of research on the condition and feel honored to be able to share my experience to hopefully help others better understand and or find comfort knowing they are not alone. A lot of people think with POTS that you take medicine, eat a high-salt diet and drink a lot of electrolytes and you’re fine. That is the farthest thing from the truth. I have symptoms everyday regardless of all doctors’ recommendations. It is much deeper and affects multiple bodily systems in an intense way. Lack of blood flow = chaos! Being allergic to gravity is the hardest thing I have ever experienced.
A year and a half later, I see the cardiologist every six months for a checkup. I’m trialing different medications to hopefully help my body stabilize. He told me trying to find medications that are appropriate, like throwing spaghetti at a wall to see if it sticks. The only medications for treatment are off-label. They aren’t usually prescribed for POTS. My heart sank because before this I was active, exercising four days a week, working full-time, leading a very normal life. I felt great! It now feels like I am 31 in a 70-year-olds body. To say it’s been a journey is an understatement. POTS is a form of autonomic dysfunction, also a form of Dysautonomia. My body does not respond normally to postural changes and gravity which in turn creates debilitating symptoms from blood pooling below the heart.
It sounds so simple, but imagine not being able to perform everyday life because your body will not maintain blood pressure or a normal heart rate just doing basic things like brushing your teeth, or eating a meal, and driving a car. Your nervous system helps regulate body functions you do not have to think about. It performs automatically. In my case, my brain is not communicating with the rest of my body. It has made me lose a lot in a short amount of time. It also made me see how much I had taken for granted prior to getting sick.
I trialed some medications the cardiovascular doctor prescribed and had to stop them after six months because I started experiencing allergic reactions to nearly all of them. I found myself also reacting to foods and drinks I have consumed all my life. I started writing down when I’d eat something and get tachycardia, shortness of breath, low blood pressure, nausea, and flu like symptoms. This continued to happen during my worst POTS flares over and over. I contacted an allergist who ran blood test checking Tryptase levels, and for a specific gene mutation for Mastocytosis. She confirmed I was allergic to 56 of the 58 things she tested me for. She started me on allergy shots which made me feel so much sicker that I had to stop after the 3rd visit.
At this point my symptoms were intense. To name all of them sounds insane but I want to go in-depth with very real things I have felt nearly every day since being officially diagnosed with a second disorder called Mast Cell Activation Syndrome (MCAS). I now consume a low-histamine diet, eat as clean as I can afford, and take high-dose antihistamines multiple times a day to help some of these symptoms to not be so enhanced inside the body. Think histamine intolerance on steroids!
MCAS is a condition that occurs when mast cells (a type of white blood cell) release chemicals too often, or in response to non-harmful triggers. These chemical mediators, like histamine, can cause intense episodes of symptoms or allergic reactions affecting multiple organ systems at the same time. I now carry two EpiPens in case of a spontaneous anaphylaxis reaction. Basically, it is terrifying not knowing what will cause my body distress. I react to a lot of smells and can’t wear my favorite perfumes anymore, or eat many foods, or tolerate temperature changes, makeup products, weather changes, even my own hormones. During flare-ups, I am mostly bed-bound from how debilitating my symptoms are. Adding this to the mix with POTS has been brutal to manage and cope with. I walk on eggshells, and if I do go out it’s me being insanely brave. My doctor wants me to see a specialist at Mayo clinic to manage these conditions because MCAS is considered “rare” in nature. However, post-COVID-infection my body has never been the same. I truly wonder if COVID has caused my immune system to become hyperactive.
These are symptoms I have struggled with for a year-and-a-half, with little answers from doctors on how to make them subside. I lost my career because of these conditions and hope someday that more doctors are on board with treating patients struggling with these syndromes. These are my symptoms I have battled with for a year-and-a-half now:
Pre-syncope, blacking out, fainting, intense head pressure, constant ear ringing, shortness of breath, cough, oxygen level fluctuating to dangerous levels, chronic nausea, reduced appetite, acid reflux even with healthy low histamine foods, rapid weight loss, skin swelling in my face, knees, ankles, blocked nose, migraines, facial tremors, eye floaters, blurry vision, vertigo, lightheadedness, high pulse, high blood pressure, low blood pressure, intense bone, joint, muscle pain, extreme fatigue, brain fog, vomiting, memory loss, skin rashes, flushing, cold sweats, hair loss, severe neck pain, abdominal pain, gastrointestinal discomfort, muscle cramps, internal body tremors, menstrual irregularities (like intense bleeding up to 12 days at a time), food sensitivities, allergic reactions to medications, smell sensitivities, mood swings, adrenaline dumps, depression, emotional instability/crying spells, irritability, tongue burning, dry mouth, TMJ pain in my teeth, temperature dysregulation, pupil dysfunction, seeing double, eyeball pain, sun and heat sensitivity, insomnia, trouble swallowing, trouble concentrating, “wired-but-tired” feeling, extreme exercise intolerance, sound sensitivity, trouble speaking, slurring my words, intense cognitive and/or neurological issues to the extent that I feel like I’ve been poisoned.
I am currently being referred to a Rheumatologist for another possible connection – Ehlers-Danlos Syndrome (EDS). This is a genetic connective tissue disorder that can cause these syndromes to occur as a cluster. Otherwise known as “The Trifecta.” I often dislocate my shoulders, ankles, and kneecaps just walking or moving my body. My doctor believes that this trifecta is wreaking havoc with my entire body as it affects joints, muscles, and blood vessels. It also can cause widespread chronic inflammation.
Undeniably, a chronic illness can profoundly have an impact on an individual’s life. Nearly a year later, I continue to be astonished by the persistent changes happening in my life. It has given me a ton of heartache, but personal growth and spirit – good and bad. Some changes have been easy to accept, others remain a struggle. I’ve also had to embrace many of the lessons, alongside the hurt that still lingers. The lived experience cannot be acquired through medical abstract. It’s through navigating the daily impact of incurable disease that one truly comprehends its complexity.
The painful lessons of chronic illness. Some of these lessons have proven to be just as painful as the illness itself. I’ve faced stigma, misconceptions, and lack of understanding. Unfortunately, societal ignorance can result in discrimination, misunderstanding and lack of empathy. Individuals with POTS/MCAS often face skepticism and dismissive attitudes from those who fail to grasp the invisible nature of their conditions. This can significantly affect mental well-being and make it difficult to seek support when needed.
It wasn’t until I personally became a person with a disability that I truly grasped the concept of ableism. Ableism, by definition, entails bias, prejudice, and discrimination against individuals with disabilities. In simple terms, it means viewing those as less valuable than their non-disabled counterparts. Looking at me, I look healthy! I can’t say how many times I have heard “you look so good” and yet they still can’t grasp what I’m encountering every day. I would not wish them to. It’s harsh, heartbreaking, and one of the most exhausting things I have ever experienced. One important aspect I am learning is to advocate for myself. I’ve grown to resent the saying “It takes a village to raise a child,” because the contrast in support I received before and after my diagnosis highlights its toxicity. It is unwise to assume people will understand your experiences, as no matter how much you explain, some people will never grasp what you’re going through. I’ve continued to advocate regardless.
Living with these conditions has taught me the importance of establishing boundaries, saying no when I am unable to fulfill certain demands on the days my body fair warns me to stop and rest. Before this diagnosis, I feared solitude; now, I must face it regularly. Since I was diagnosed, I’ve learned friendships can be fleeting. Following my illness, several friends drifted away from my life – a common experience when someone is diagnosed with a chronic illness. The most challenging aspect was realizing that it was not my fault. As a result, I have learned to keep my social circle small. Dealing with loss and grief often leads to anger, resentment, and guilt. The constant battle against limitations imposed by the conditions is something I have struggled with the most. Reminders of a life once lived fully, now replaced by a challenging journey against physical obstacles as well as emotional. Mourning the loss of a vibrant and carefree existence takes its own toll.
A diagnosis of a debilitating disease like POTS/MCAS can teach both negative and positive lessons. Though living with these conditions presents its challenges, there are some silver linings. For example, the lessons learned along the way can ultimately lead to personal growth, resilience, and a deeper understanding of oneself. The amount of growth that I have done since my diagnosis is hard to describe completely, but it did indeed happen.
Facing limitations and adjusting to a new way of life was and is still incredibly challenging. Activities that were once effortless now require adaptations or modifications, so they don’t hurt and tire me out. I’ve had to learn how to pace myself, ask for help when needed, and find alternative ways to pursue my passions. I’m still working the kinks out. Finding creative solutions to be able to provide stability to myself and my beautiful daughter throughout this difficult journey. I’m currently trialing Midodrine in hopes of raising my blood pressure to help the orthostatic intolerance. However, the symptoms persist a year-and-a-half later and I struggle doing the most basic life necessities. I hope to someday have the funds to see a dysautonomia specialist who can change my life for the better.
All in all, we cannot tell what someone is going through just by looking at them. Someone can look fine but be struggling in ways we don’t understand. This diagnosis taught me to be more empathetic toward others. I am a firm believer in treating others with kindness and respect, just as I would like to be treated. As for the future I will continue to be a voice for others who are struggling in silence. Thank you for taking the time to read my story so my voice can also be heard.
About the author: My name is Sarah Marie. I am 31 years old and I absolutely adore animals! I was a pet-stylist for ten years prior to getting sick. I’m a full time mother to a 5 year old who is indeed my best friend! We enjoy cooking together, music, doing art crafts, reading books and recently we’ve started our own small vegetable garden! We have a dog named Mowgli who loves to play fetch. I am grateful to be enrolling into an online school for a medical billing and coding diploma, as well as graphic design. I try to not let the hard days win, and if they do I try again tomorrow! I’m always striving to make people smile, laugh and feel loved! I hope to inspire someone to keep going and find strength in the hard moments. Keep advocating for yourself and never lose hope.
