Of Dutch origin, Sarah’s childhood revolved around the Netherlands. They were good years. Sarah’s ordeal started way back in 1994 when she was only 20 years old. She was a postgraduate student who had her eyes on bagging her Master’s degree in Art History. Full of life and in her prime, Sarah was a bundle of positivity and energy; as healthy as an ox. Not only was she a die-hard fan of positivity, but she was also down-to-earth. She was the most accommodating person one could ever meet.
However, PoTS was lurking around the corner, seeking to dash the hopes and positive outlook Sarah had. She was on a two-week study trip to Florence when she felt a wave of nausea, shakiness, and dizziness. An Italian doctor checked her up and dryly commented that she should eat more meat. It should have ended there, but Sarah knew something was not right. She was not a frail woman even if she did not look like it. She acknowledged the doctor’s report but made up her mind to take it up later.
Once she got back home, Sarah visited her GP. She was not satisfied with the Italian doctor’s assessment. Unfortunately, her GP could not pinpoint anything. She met another consultant who also ordered a range of tests that showed nothing. From there, she visited other specialists who advised that there was nothing wrong with her. Whilst some of the specialists had kind words for her, others insinuated that it must have all been in her head. According to them, she was either overtired or anxious; whatever she felt was imagined. One thing Sarah knew was that she did not have one anxious bone in her body. She liked to live each day as it came; with optimism and expected good endings. She started to get really worried about the turn of events.
Her dizziness became worse, and it was almost as if she felt exhausted all the time. She also started suffering from muscle pains, palpitations, and nausea. Regularly, Sarah would have episodes where she felt as if she was about to pass out, but she never did. Instead, she increasingly suffered from dizziness, nausea, impaired vision, severe shaking, and sweating, alongside other symptoms. Sarah’s body would often go into the “cold-red” alert for no apparent reason.
She became immobile and struggled to talk, even though she was conscious. She got frightened. Although her episodes came at an interval of two days, they were swallowed up because it took almost two days for her to become completely stabilized. Hence, she moved from one episode to another.
By this time, Sarah had a new GP who did not only doubt her but was also very vocal about his opinions. He penned down her actions and reactions to over-anxiety and depression. This alone was enough to set Sarah rolling into depression, but she remained unyielding. Becoming depressed would only validate all the insinuations.
Days rolled into weeks and then months, but Sarah was yet to understand what she was experiencing. She had exhausted all known medical solutions with nothing to show for it. Sarah had tried all the consultants that she could, but they could not help her. She could feel herself getting exhausted from time to time. She felt terrible about everything.
As expected, her university studies slowed down, pushing her into a desperate, confused, and scared corner. She became frightened that whatever was happening inside her must be sinister and chronic. Here she was, a ghost of herself. She reminisced about her past active life and wished she could turn back the hands of time. More depressing was the fact that she had no clue about what was happening. On the other hand, there appeared to be no immediate help for her. Sarah went down the journey of self-pity and loss of faith.
She decided to put school on hold for the time being to avoid wasting her money. There was no need for her to keep pumping cash on such ventures when she obviously could not attend school. Also, she could not work. So, her resources kept depleting, and she had to take more bank loans to make ends meet.
Without any external help, Sarah realized that even if she was dealing with something chronic and serious, she could not remain in bed for the rest of her life. She had to do something meaningful and impactful for herself. Who knows, she may just find the diagnosis and cure for her strange ailment.
With this in her mind, she delved into the path of alternative medicine. Sarah tried various diagnoses such as ME and Hypoglycemia in the search for a solution. She used many indigenous methods, including homeopathy and acupuncture. As the down-to-earth person that Sarah was, she had quite a bit of struggle with their effectiveness. In the end, none of it did anything for her.
Sarah’s open-mindedness and optimism helped her along the path of recovery. Although the battle for healing and wholeness was ongoing, she decided to put her time to excellent use. On the good days, she went on with her life as usual. On the blue days, she took it one step at a time. Gradually, she picked herself up and made considerable progress. She went back to school and completed her Master’s education.
Encouraged by her progress, Sarah further enrolled in a Ph.D. program to pursue an academic program. The flexibility of the program was to her advantage because a 9-5 everyday job was a no-no with her health status. All these achievements did not stop her from having fainting episodes. Sometimes, they happened in public places, other times, at home.
Sarah’s case and the fantastic way she dealt with PoTS is truly an encouragement. Not once through her fight against the condition did she allow it to put a damper on her zeal for life, energy, and positivity. She faced it alone with superb strength and vigor that is almost surreal. Sarah’s life is a source of hope that when there is life, there is a will. Of course, she initially took a break to align her goals and achievement to fit into her current health status. But the more important detail is that she bounced back with increased spring. She made juicy and sweet lemonades from the very bitter lemons life threw at her.
Sarah’s feat did not end with pursuing a higher degree. During her research, she made a trip to England many times, where she eventually met her English husband. Later, she moved to England, where she gave birth to two children.
Sarah was not about to allow a faceless condition to rob her of the joy of motherhood. So, despite the PoTS, she decided to have children. Yes, pregnancy and labor were tenacious and life-threatening. Once, during her second pregnancy, she fainted while dangerously perched at the top of the stair with her youngest son. Her survival was a miracle because, despite the fainting, she did not fall. Meanwhile, she continued her trips to the doctors, who in turn, failed to find what was wrong with her.
Over the years, Sarah learned to fold and knead her life around the illness. No, she could not work full-time or regularly like others, and she could not commit to regular appointments. Long shopping and clubbing were impossible for her too. Hot weathers were a no-no, and she regularly had to call on her supportive husband to come home, scrape her off the pavement, or take over the household when she felt ill. She had a lot of off-days, many scares, and pre-syncope symptoms, but with her husband fully supporting her, she managed. They weathered the storms together, sticking and supporting each other. Sarah realized that as long as she lived like a plant, she felt ok. Plants do not stress themselves the way we do. They have an approach to life. They carry out all life’s processes on one spot, living each day as it comes with unnecessarily worrying about tomorrow. So, she tried to moderate the things she did and found a balance between plant life and fun.
She slept with three pillows at night for comfort. Her family got used to seeing mummy up in the middle of the night when she felt bad, eating little and often to avoid upsetting her stomach, or having an afternoon nap while sitting on the sofa. They adjusted their way of life to accommodate and support her while they still had no idea what was wrong with her.
The battle against PoTS for a victim is often a lonely path as established by the few stories shared so far. However, it does not have to be like that. With support, people with PoTS not only fare better but are also able to cope better with the changes they have to unavoidably make. PoTS takes its toll on both the body and the mind. When the mind is empowered, it becomes easier for the body to fight against it. Sarah enjoyed the support her family gave her, even when the medical community was not a place to search for succor. They did not have to understand what was wrong before loving her; knowing that she was unwell was enough to prompt them to act.
The year 2007 was not a particularly pleasant period for Sarah. She had several severe episodes of PoTS. It was terrible enough to spur her to try another GP. As of then, she had stopped making the fruitless trips to the GPs since her disappointing days in the Netherlands several years back. This time around, a pleasant surprise awaited her. The new GP shocked her by taking her seriously. That was not a common occurrence based on her experience. Based on her case, the GP referred her to a neurologist.
The condition worsened so much that Sarah had to be on admission to the hospital for a few days while the neurologist tried to gather all possible tests. This was beyond just conducting the necessary observations. Anything that could give a clue to her ailment got included. Finally, the neurologist concluded that he could not find anything wrong with her except a raised heart rate and blood pressure at times.
Although the neurologist had no idea what postural tachycardia was, he arranged for a tilt-table test. It confirmed the increased heart rate with movement. Based on that, he suggested that she should try beta-blockers. It was only a blind suggestion as he had never heard of PoTS. Once she got used to the drugs, she stabilized a bit. The beta-blockers took the sharp edges off her condition. So, even though the episodes did not stop, they would not become full-blown; a wave of dizziness would remain a wave of dizziness. Gradually, she could rely on herself again. With that, Sarah managed the severity of her condition.
In 2010, three years after starting the beta-blockers, she decided to try another specialist again. She went ready for battle, defense, and disappointment. After all, that was the norm. However, she got the shock of her life when the specialist said, “Before I tell you what you have, I need to ask you a few questions.”
Sarah nearly fell off her seat. That was a new one. Immediately, her mind went on a charade of questions; “Would the man actually know what the matter was with her? “Was she going to be free after all?” Putting her acts together, she paid attention to what he was saying. The specialist told her she had vasovagal syncope or PoTS. Then, he referred her to “current” research and available pieces of information about it.
Sarah spent a good while in the car park afterward, trying to come to terms with what just happened. She could not believe that after 16 years of always meeting with brick walls of misunderstanding, unwillingness to understand, ignorance, and helplessness, he had found the answer. Her search on the internet coincided with what he told her, and the symptoms she had battled with over the years. She leaned more towards PoTS than vasovagal syncope as more of her symptoms and signs fell in line with it. Nonetheless, both appeared to be part of the same family. A year later, Sarah visited another specialist who diagnosed her PoTS, and she agreed.
Finally, she was sure of what was wrong with her. Sarah could not describe how amazing it felt to be able to put a name to what appeared invisible and a lonely journey so far. She could not believe that she was not the only one who had it. Whilst getting to know what ailed her, Sarah discovered that a patient organization existed.
Still, on beta-blockers, Sarah found her happy and functional life. She has a family, people she can call friends, and above all, she does what she loves. It meant making compromises and accepting her limits, but she has a better life because of that. Many things may still be a no-go for her, but she does not let that bother her. She knows what she can take on, and what is too much.
Although she is not working as an academic as she set out to be, she found a new love of painting. Being an artist is something she can combine with her health, her beautiful children, and her life. Her career as an artist is always growing, and her optimism for a beautiful future never diminishes. She has been lucky to have her works included in some prestigious exhibitions. Every day, Sarah looks forward with new vigor and energy, all directed toward pushing her craft forward.
Sarah hopes that her story will be informative for easy diagnosis of those who may be going through what she has experienced. Every day, she believes that someone somewhere will find encouragement and hope to start all over again by reading her life’s story.
