Authors Note: A Message of gratitude from Ellie, Creator and Author of A Note of Hope.
"I am excited to share Juliana’s story for the ‘A Note of Hope’ project. Juliana connected with our initiative through TikTok and completed our standard questionnaire to share her journey with multiple chronic illnesses. Diagnosed with Inappropriate Sinus Tachycardia (IST), Postural Orthostatic Tachycardia Syndrome (POTS), Hypermobile Ehlers-Danlos Syndrome (hEDS), Mast Cell Activation Syndrome (MCAS), and Median Arcuate Ligament Syndrome (MALS), Juliana’s path is a testament to her remarkable resilience. Once a competitive cheerleader and pole vaulter from the USA, she faced the additional challenge of having her symptoms dismissed by numerous healthcare professionals—a common issue for young women worldwide. Her experiences echo similar stories I’ve heard from here in the UK and globally, highlighting a critical issue in healthcare. Despite these challenges, she continues to pursue her education, even studying abroad in London, and remains passionate about her dreams and goals.
Juliana’s journey underscores the power of self-advocacy, the importance of supportive relationships, and the ability to find joy in small victories. Her story is a beacon of hope, showing that perseverance makes it possible to overcome obstacles and continue striving for one’s dreams. Although I didn’t get the chance to chat with Juliana face to face, her radiant and bubbly energy shone through as I read her answers and followed her social media. I hope Juliana’s story inspires others facing similar challenges as much as it inspired me!" - Ellie Howe, creator and author of 'A Note of Hope.'
"My name is Juliana, I am 20 years old. My main symptoms are fatigue, heart palpitations, joint pains, dizziness, GI issues, and so so much more…”
At just 20 years old, Juliana's life took an unexpected turn when she was diagnosed with multiple complex health conditions.
Juliana's journey into the world of chronic illness began gradually and almost imperceptibly. She explains that strange and unexplainable symptoms had plagued her throughout her entire life. Fatigue would sometimes slow her down, heart palpitations caused fleeting moments of discomfort, and occasional dizziness made her pause. Despite these symptoms, she continued to lead an active lifestyle, passionately engaging in competitive cheerleading and pole vaulting.
The turning point in Juliana's health journey came in 2020 with the onset of the COVID-19 pandemic. Contracting the virus once was a blow, but Juliana faced an even harsher reality: she experienced the illness not just once but four times. Each encounter with COVID-19 intensified her symptoms, transforming them from manageable inconveniences to significant health impediments. The fatigue that had once slowed her down occasionally became debilitating, making even simple daily tasks feel like monumental challenges. Her heart palpitations, which had been fleeting moments of discomfort, grew more frequent and alarming, disrupting her daily activities and filling her with anxiety. Dizziness, once an occasional inconvenience, became a constant companion, affecting her balance and ability to focus.
The sports that once brought her immense joy and fulfilment now seemed like insurmountable challenges. As a competitive cheerleader and a state-ranked pole vaulter, these activities were her passions and sources of pride. Yet, they soon became draining and left her feeling severely unwell. The rigorous training sessions she once looked forward to now seemed impossible as her body struggled to meet the demands. Each practice and competition, which had previously energised her, now sapped her strength and exacerbated her symptoms. The physical exertion that had been a source of joy and accomplishment was now a trigger for her worsening condition, leaving her feeling frustrated and defeated.
“I got COVID in 2020. At the time I was a competitive cheerleader and a pole vaulter, and I started to really struggle to do my sports that I love so much because of my health. I could no longer enjoy them because of my symptoms, it made me just feel so awful. I’ve now had COVID 4 times and everytime my chronic illnesses got worse after.”
Subsequently, Juliana and her parents visited multiple doctors, but her concerns were repeatedly dismissed. She recalls a visit to a cardiologist at her state's children's hospital, for which she and her family had waited months, hopeful they would finally receive answers, only to be told she was "fine" and would grow up to be "a dizzy adult." After many appointments with similar outcomes and "normal" test results, Juliana admits that, for a long time, she had given up on finding answers.
However, in 2021, after numerous doctor visits and further tests, Juliana finally received a diagnosis of Inappropriate Sinus Tachycardia (IST), a condition characterised by an abnormally fast resting heart rate without an apparent cause, such as exercise or stress. The condition can lead to symptoms such as palpitations, fatigue, dizziness, and shortness of breath. Managing IST typically involves medications to control the heart rate and lifestyle modifications to reduce triggers. But for Juliana, the medication she was prescribed wasn't helping her, and when she returned to her doctor to address this, she was once again dismissed and left without help.
While an IST diagnosis explained why her heart would race unpredictably, it did not account for all her symptoms, leaving some aspects of her health still shrouded in mystery. In search of further answers, Juliana stumbled across Postural Orthostatic Tachycardia Syndrome (POTS). POTS is a condition of dysautonomia, where the autonomic nervous system does not function properly, leading to issues with blood flow and blood pressure regulation. Common symptoms include severe lightheadedness, frequent fainting, rapid heartbeat upon standing, chronic fatigue, nausea, and even cognitive impairment, often referred to as "brain fog." Juliana approached her primary care physician to ask if this could be something she might have and was shocked and disheartened by his response.
"He told me to stay off of 'Dr. Google' and 'Dr. TikTok' and basically that POTS didn't exist, and if it did, it was too rare for me to have, and I didn't faint enough for it," she recalls.
In November 2023, however, Juliana proved her primary care physician wrong after she travelled to see a dysautonomia expert who diagnosed her with POTS after conducting a tilt table test. This test involves strapping the patient to a table and gradually tilting it upwards to simulate standing while monitoring heart rate and blood pressure. For Juliana, this diagnosis provided a clearer picture of her health struggles. It explained the wide range of symptoms she had been experiencing relating to her heart rate and blood pressure.
Yet, the journey to understanding her health was far from over. At the beginning of 2024, after contracting COVID for the fourth time, Juliana began experiencing severe gastrointestinal symptoms, which resulted in her being unable to hold down any food or water and multiple emergency room visits for extreme stomach pain and nausea. After doing more research, Juliana suspected that she might have hypermobile Ehlers-Danlos Syndrome (hEDS), a condition closely related to and often comorbid with POTS.
Hypermobile Ehlers-Danlos Syndrome (hEDS) is a genetic disorder that affects the body's connective tissues. It is characterised by joints that can move beyond their normal range, unusually stretchy and fragile skin, and a propensity for bruising and scarring. Desperate for answers and relief from her symptoms, Juliana visited another specialist, this time travelling more than 16 hours and remaining inpatient to undergo ten days of extensive testing. Consequently, they were able to diagnose her with hEDS after she scored highly on the Beighton score test, which is a scoring system used to assess joint hypermobility and a critical diagnostic tool for hEDS. Juliana scored highly on this test, indicating significant hypermobility.
Additionally, she was diagnosed with Mast Cell Activation Syndrome (MCAS) and Median Arcuate Ligament Syndrome (MALS). Mast Cell Activation Syndrome (MCAS) involves the body's mast cells releasing too many chemical mediators, leading to symptoms like severe allergic reactions, chronic inflammation, and various systemic issues. Median Arcuate Ligament Syndrome (MALS) is a condition where the median arcuate ligament compresses the celiac artery, leading to pain and blood flow issues. MALS can cause gastrointestinal symptoms like severe stomach pain, nausea, and vomiting, which Juliana experienced. In her case, while she has the compression associated with MALS, her blood flow remains normal. Her doctor hopes that starting treatment for MCAS will reduce inflammation in her stomach and alleviate the compression, helping her avoid surgery.
Receiving these diagnoses was both a relief and a daunting revelation. While they validated her experiences and provided answers after years of uncertainty, Juliana now also had to confront the reality of living with several chronic illnesses that had no cure and required constant management.
To find out more about Juliana's conditions, click the link below:
Hypermobile Ehlers-Danlos Syndrome (hEDS)
Postural Orthostatic Tachycardia Syndrome (POTS)
Inappropriate Sinus Tachycardia (IST)
Mast Cell Activation Syndrome
Median Arcuate Ligament Syndrome (MALS)
“The biggest challenge for me has definitely been advocating for myself. My main priority right now is working on my advocating skills because at the end of the day it is my body and I know when something is seriously wrong.”
In today's complex healthcare system, patients often feel helpless regarding doctors' decisions and diagnoses. For many, this system works. But for some, particularly those with chronic or elusive conditions, it can be a relentless battle. In her interview, Juliana shares that her greatest obstacle has been the constant struggle to assert herself in a system that frequently ignores her concerns. Despite experiencing symptoms that she knows are indicative of a deeper issue, she has often been met with disbelief. "I've been dismissed by so many doctors that I unfortunately really struggle to push further when they say I'm 'okay,' even though I know I am not."
This struggle is not uncommon. Many patients with chronic illnesses, especially those with conditions that are not easily diagnosed or visible, find it challenging to convince healthcare professionals of the seriousness of their symptoms. This can lead to a dangerous cycle of neglect and worsening health. For those advocating for their health like Juliana, the journey is fraught with hurdles. The lack of understanding and support from healthcare providers can leave them feeling isolated and dismissed. Building self-advocacy skills becomes not just a strategy for improving their health outcomes but a vital lifeline in the fight against the indifference of a system that often overlooks their struggles.
The emotional toll of living with a chronic illness has been another significant hurdle in Juliana's journey. The weight of her diagnosis often feels overwhelming, especially considering her cheerleading and pole vaulting ambitions.
"Coming to grips with the fact that I will have these conditions forever has been hard on my mental state," she admits. The chronic nature of her illnesses brings a heavy psychological burden, one that frequently leads to feelings of fear and despair. "The thought of it sometimes makes me upset and just afraid."
For Juliana, balancing daily life with chronic illness is a delicate act. Her passion for cheerleading and pole vaulting once defined her, filling her days with rigorous training and competitive spirit. These activities were her passions, identity, and source of pride. The limitations imposed by her illnesses now force her to constantly negotiate between listening to her body and trying to maintain some semblance of normalcy.
"I also struggle with balancing my life with these illnesses," she shares. The need to rest and manage symptoms often conflicts with her desire to stay active and engaged in what she loves. "I know it is important to listen to my body and rest when needed, but it's also terrible for me when I isolate myself and let the sickness control my life."
"Doing whatever makes my heart happy, like ordering food or watching Grey's Anatomy in bed, because I deserve it. All of these things really do bring me joy when things feel so dark.”
When things are tough, Juliana finds joy in simple pleasures that make her heart happy. She treats herself to small acts of self-care, like ordering food for delivery or spending a day in bed watching "Grey's Anatomy." These moments of comfort and normalcy are essential for her mental well-being, providing a sense of relief and escape from the daily challenges of living with chronic illnesses.
Supportive relationships also play a crucial role in her life. Juliana has found friends who genuinely try to understand what she's going through, offering her compassion and companionship. She has also connected with people online who share similar experiences, creating a network of empathy and understanding that brings her significant joy, especially during dark times. This community of supporters provides emotional support, practical advice, and shared experiences, helping Juliana feel less isolated in her journey.
Music is another profound source of solace for Juliana. Listening to the music she connects with offers therapeutic benefits, helping her process emotions and find moments of peace. Whether it's a song that resonates with her struggles or an upbeat tune that lifts her spirits, music is a constant companion that soothes her soul. It allows her to express feelings that words sometimes can't capture and offers escape and relaxation.
Through these simple yet powerful acts of self-care, supportive relationships, and the healing power of music, Juliana maintains a sense of balance and joy amidst her health challenges. These elements are vital to her mental well-being, helping her navigate the ups and downs of her journey with grace and resilience.
“Definitely college! I go to college out of state, but even though it can be really difficult, it’s the best decision I’ve ever made. I feel so lucky that even though I struggle with all these things, I am still able to go to school, even if my experience isn’t the ‘typical’ college experience.”
Despite her health challenges, Juliana has achieved significant milestones that speak volumes about her resilience and determination. One of her proudest achievements is attending college out of state, a decision that required her to navigate the complexities of balancing schoolwork with her health, especially during flares. Juliana has mastered the art of utilising the accommodations available to her, often studying at the hospital or heading to the ER late at night, only to attend classes the following day. These efforts, though gruelling, make her feel incredibly proud of herself, demonstrating her unwavering commitment to her education and personal growth.
Juliana recently accomplished an incredible feat in June by studying abroad in London for a month. Although the thought of managing her health in a foreign environment was daunting, the fact that she even attempted to study overseas despite her health issues speaks volumes about her courage and resilience. In a setting far from home, Juliana faced the challenge head-on, adjusting to new surroundings while adhering to her health management routines. This experience broadened her horizons and reaffirmed her belief in her ability to overcome obstacles.
Juliana feels fortunate to pursue her education and explore new experiences, even if her journey isn't the typical college experience.
“If I could write to my younger self I would want to tell her that there ARE people out there who will believe her and will care.”
In a note of hope to her younger self and others in similar positions, Juliana shares how her journey has taught her important lessons about self-advocacy, "These symptoms aren't normal! For the longest time, I wrote off my symptoms, and then when I finally started to connect the dots that these things weren't normal, doctors would tell me they were and that I was overdramatic. I started to believe this as the truth!" Juliana emphasises the importance of researching diseases and using "Dr. Google" to one's advantage. "When it comes to things like these illnesses, more often than not, we're going to 'self-diagnose' and heavily research to find a doctor who understands these specific diseases to get any answers or treatments."
However, Juliana has learned that people will believe in her and care about her struggles despite her challenges. "This is still something I have to tell myself often. It took me years to get diagnosed with IST and POTS, but it eventually happened. I have to have faith that this will happen with all my other undiagnosed issues!"
Juliana's story is one of unwavering spirit, where each challenge she faces only strengthens her resolve. She continues to chase her dreams, whether it's through her studies, travelling, or simply finding joy in the small victories of daily life.
Thank you Juliana for sharing your inspiring story for the 'A Note of Hope' project.
Comments