Generally, possessing these two things will boost the confidence of any man. The first is money while the second is physical strength. Men are (for the most part, biologically) naturally stronger than women and are proud of that. It is a prominent influencing factor in anything they do. So, any condition that erodes their strength is usually devastating, more on the mind than on the body. It is worse when the man’s life revolves around outdoor activities. In the same vein, a man without money in his pockets will feel incomplete and incapable.
Although PoTS commonly occurs in women, it does not mean that it does not/cannot affect men too. Nonetheless, when it does, such a person may feel like the loneliest person in the world because it may be difficult to get other men to experience such.
Dickson was one such man that did not escape the claws of PoTS. He was the true definition of an outdoor person. He spent most of his time engaged in one outdoor activity or the other. As an outdoor photographer, his nature and way of living were understandable. Dickson started his photography business in 2007 right after school. He had always been certain about what he wanted to do as a means of living after having his education.
His profession required that he kept fit. Carrying his kit, Dickson would walk several miles a day, which sometimes involved strenuous climbing, to get the best shot of the outdoors. His average ascent/descent per day ran into thousands of feet per day. It was the kind of life Dickson adored. Even when he boycotted the outdoors to work in his office, he ensured that he ended the day with a minimum of a two-mile walk in his local countryside.
On a great typical summer day, Dickson’s landscape shoots started in the earliest hours, around 3 am, and ended at dusk, around 11 pm. Even for the healthiest and fittest of all people, it was a challenging way of living. It required utmost fitness, both of the mind and the body. With this type of lifestyle, having PoTS was a recipe for all forms of imaginable disaster. Everything about Dickson’s life was about to change, especially his source of living and his strength; the two most important features in any man’s life.
The onset of PoTS in Dickson drastically altered his life, although he simultaneously had vEDS with the PoTS. Because of that, Dickson was not sure which affected him more out of the two. Regardless of that, he did have a difficult time managing his health.
Although Dickson did not know the nature of what he was facing at the time, the first episode that got him hospitalized started way back when he was fourteen years old. He was still in school, trying to get through that phase of his life before setting up the kind of life he had always envisioned for himself. He spent an entire year in and out of the hospital because of stomach and GI problems. Nothing was conclusive because, as you probably suspected, all the test results came up with nothing!
Eventually, his parents took him to a child psychologist who delicately told him that it was stress-related. In other words, there was nothing wrong with him, and his head was making things up. To Dickson, it felt like he was losing his mind. Of course, these statements and resulting actions were unkind to a child who was going through a difficult phase in life. All efforts on Dickson’s part to convince the psychologist proved abortive. There was a diagnosis, and nothing would change that.
Apart from not being able to find a cause of Dickson’s health challenge, the doctor’s attitude also took away another crucial element in his growth- his confidence. As a teenager, being confident was even more important than food, and Dickson had to fight every day to make sure he developed into a well-rounded teenager. It was unfair that he had to face that, even though he was already battling with PoTS. As a result, Dickson developed what would later become a life-long fear of hospitals and doctors. They became a symbol of unbelief for him.
Despite facing the hospital saga, PoTS did not spare Dickson, and for the next ten years, he moved in and out of the hospital. His social life was also a struggle. He could not fit in both at the college, and later, at the University. He could not participate in the “in thing” that defined being a man. The “drinking culture” was a serious challenge, making him feel odd among his peers.
Each outing created an embarrassing situation for him. His body was either fighting off alcohol, was struggling with the warmness, loud and noisy environment of the clubs, bars, or numerous parties. Although they were mild, the panic attacks always ruined the fun times. His already chipped self-confidence further suffered another dent; so much so that he began to make excuses. Also, the family timeout was a mini hell, especially during visits to restaurants. He always ended up nauseous, but nobody suspected anything.
The fighter that he was, Dickson found a way to cope with some of the social issues, if not all. He became the master pretender, always putting on a brave front so that no one would suspect that he was unwell. For his friends at school, Dickson became the chauffeur. As the designated driver, he could always excuse himself from drinking and escape the taunts he would have otherwise faced. That way, he could go out with them, have fun, and still not take alcohol.
For a budding teenager, having such a heavy burden at heart was not helpful. The only time Dickson enjoyed was when he was by himself. It did not stop PoTS symptoms, but at least he could express his frustration without having to explain anything to anyone. But the telltales of all Dickson bore soon began to show. The masks that he wore started falling off, revealing the child within. He began scheming how he would see a different psychologist without anyone knowing. He believed the psychologist’s diagnosis of generalized anxiety to be only part of a larger truth; that something deeper must be wrong with him. The seed of self-doubt rooted itself and started growing in his mind. The only thing that stopped him from taking such a desperate step was his greater fear of hospitals and doctors. As a result, he continued to battle with the PoTS in his solo way of doing things.
Eventually, in his 20s, Dickson’s blue days increased. He would experience many days of strange illness and tiredness, despite his many attempts to sleep on time. It did not make much sense to him at the time, and he continued his life. He thought that it must be the stress of his job that was getting to him. In other to combat it, he began to sleep much earlier and take the due rest, but nothing changed.
Dickson saw the changes in his body, but his mind was at rest. After a particular winter photography hike in the peak district, he noticed that he was fatigued and had lost a few pounds of flesh. It should have prompted him to action, but Dickson carelessly dismissed it again. He thought it was due to the chilly weather and the recent stress he put his body through. Once again, he let another vital sign from his body slide.
Eventually, after trying to communicate with Dickson, he did not get the message, his body had enough. He began to experience extreme tiredness coupled with digestive system upset. Month after month, his health grew worse. Then, constant nausea set in. Whatever pain he had felt in the early periods was nothing compared to what he started going through. Things became difficult with a slight dizziness. All the symptoms began to affect his work. His camera bag became too heavy for him to carry, especially with his heart pounding from any minor exertion. Nonetheless, Dickson did not listen to the messages his body sent him. He carried on as if everything was okay.
A turn of events in June 2020 drove the message home for Dickson. He went on a solo trip for camping and photography in the Lake District; it became his last. He fell ill during those few days as he could not stay away from the heat of the sun. His tent was also like a sauna as a result of the constant beating it got from the sun. In his naivety, he assumed his symptoms must have something to do with a 48-hour bug. Fortunately, the shade of an Ash tree nearby saved him from becoming overheated. Dickson recognized and treated it as a place of refuge: a safe haven from the sun.
After some days of weakness and not being able to work or enjoy himself, he mustered enough strength to make the long drive back home. Back home, Dickson observed that he had lost more weight than expected. Again, he tried to tackle it using his own methods. He went on a high-calorie diet of 5 meals per day. All things being equal, that should restore his weight, but Dickson was yet to know the true nature of what was happening.
The diet plan did not only fail as he lost extra two pounds after two weeks but his body also violently reacted to it. He became incredibly ill with stomach cramps and indigestion. That was when it dawned on him that something was wrong somewhere. At last, Dickson got the message and paid attention to his body. It should have been apparent all along, but the cloak of fear surrounding the doctors and hospital use prevented him from seeking the medical help he needed.
Fear is a crippling factor. Many people like Dickson are out there, suffering and hiding, and in turn, empowering PoTS. Finally, it got to a stage where he could no longer handle the pressure of the silence. Dickson realized one thing; he needed a support system of love. He knew he could not count on the hospital to give him that, but there was an area he was constantly ignoring. Getting his wits together, he summoned enough courage to confide in his mother’s tears who reprimanded him for his oversight. They could have tackled it together as a team.
Working hand in hand, they started scouring for the right diagnosis and cure for whatever was wrong. The rule of two heads being better than one came in handy. Not only could Dickson discuss his fears and feelings with someone else, but he also became encouraged to try seeing doctors again. As expected, it was not a smooth experience because the tests still showed that nothing was wrong with him. If anything, they came back satisfactory. Dickson was back to having to prove to the medics that he was unwell. Nonetheless, this time around, he had his mother on his side. She became a psychological boost for him.
However, as time passed by and his condition got worse, Dickson found his self-doubts coming back to him. He was frustrated because the simple act of just standing was enough to make him tachycardic. At that stage, he believed he had no blood left for any other test. Still, nothing showed up. Dickson started thinking that maybe the first diagnosis was correct, and he was losing his mind for real. The fourteen-year-old Dickson began to resurface. With each visit to a new doctor, his fears grew real. He believed that they all looked down on him and muttered about how their time was wasted by seeing him. All of these were nowhere else but in Dickson’s head.
The doctors kept on trying different methods to get a reliable diagnosis. Each opened door ended in a “no-way” zone. Dickson felt that maybe he had missed out on something. He knew that the illness did not originate from him. He could not have made his body pass through all that agony to get attention. The pressure of consistently having to prove that something was wrong added to his body’s ill health.
The deterioration that was once gradual soon became apparent every week. All the scales pointed downwards except for his weight. The weight settled, even though it fell in the underweight region. It became difficult for him to perform simple tasks like brushing his teeth. For Dickson, walking was almost out of his options. The life he knew was no more!
The outdoors, the photography, the runs, the hikes, everything became phased out just like that. His camera bag sat in the corner of the room, accumulating one layer of dust over another. Dickson felt trapped in a body that was no longer his. Every day, the pain of his body’s incapability cut through his heart. He had the will, but his body could no longer be controlled at will. He would simply plod along, breathless and lacking the energy to go any faster.
He could not describe the feelings. It was akin to having a healthy person running flat out, as fast as they possibly can, and then trying to run faster. For Dickson, trying to reach walking was as impossible as that. In turn, he started pestering the doctors daily to get answers. Soon, he got attached to three different consultants at the hospital. They simultaneously examined him. He had another rendition of tests, ranging from MRI scans to cameras being inserted into dark and internal places. He also had injections, and needle pricks to get more blood samples.
The doctors were unsure of what was wrong. As such, they queried many conditions. Some suggested Lyme Disease, another thought about thyroid-related problems, while some attributed his symptoms to allergic reactions to gluten. Dickson felt like being fourteen years old all over again. Somewhere inside him, that boy-child never recovered from the words and actions of several years ago.
Meanwhile, he would not stop badgering the consultants’ secretaries even when he had no appointments with the doctors. He consistently tried to push his appointments forward while pursuing test results at the other end. Once he got the results, he would try to find a way to bring them to the top of the unending pile of case notes the doctors had to daily examine. That was only the first phase of the case. The second phase entailed how to convince the doctors and other medics that although his results kept coming back satisfactory, there was something sinister going on.
Finally, fate decided to smile at Dickson. During one of his endless trips to the hospital, he met an Internal Medical Consultant by the name of Dr. Mike. Dr. Mike was familiar with PoTS, but to be on the safe side, he requested some additional tests and x-rays. He wanted to be sure that his suspicion was what Dickson had. Tired but holding on to a shred of hope, Dickson went for the tests.
On the third visit to the hospital after about a month, Dr. Mike asked a nurse to check Dickson’s pulse whilst standing and on the bed. He laid on the bed, ensuring that he was as still as he could be. The nurse later checked his pulse after three minutes which was 118 bpm. Then, she asked him to stand up. Aware of what could happen, Dickson slowly dropped his legs off the bed and stood.
At that point, the attending nurse commented that he looked dizzy. To keep him steady, she placed one hand on his shoulder. Dickson knew within him that the battle was over; now, they would believe him. Immediately he stood upright, the machine began to beep and flash all sorts of colors. The noise was deafening. The baffled nurse checked that everything was intact while muttering, “That’s not right. That can’t be right” to herself. She confirmed that the machine was still attached to Dickson’s finger.
Sure of her assessment, she looked at him and said, “I think we’ve found that there is most definitely something wrong.” Within seconds of standing up, Dickson’s heart rate had shot up from 118 bpm to 253 bpm! That was incredible! It left the nurse astonished, with many questions rising up from there.
Dr. Mike knew just what to do. He immediately prescribed beta-blockers to control Dickson’s heart rate, then wrote a reference letter addressed to Prof Mathias in London. The drugs controlled the heart rate but also reduced the blood pressure a lot, one of the side effects Dickson had to suffer.
Eventually, he met with Prof Mathias on the 19th of April 2011. He had autonomic testing later and met with one of Prof Grahame’s consultants on an EDS appointment on the 27th of June. His stomach problems also received medical attention at Barts on the 21st. Dickson understands that he is suffering from a chronic illness. Nonetheless, he is relieved that he can finally understand something that has mentally and physically troubled him for years.
The power PoTS has over its victims relies heavily on its rarity and the inability of many others to immediately see what is wrong. Many people who have had PoTS or taken care of someone who had it know that it is traumatic for the body. It causes both psychological and physical on the body. In Dickson’s case, the fear of the doctors and the hospital system compounded it.
Just like worrying, nursing any type of phobia gives you work to do without taking you anywhere. Dickson spent many years suffering from the claws of PoTS because he allowed his fear to tie him down and erode his self-confidence. We cannot always stop people from being negative or doubtful, but we can control how we react to them. Opening up to his mother marked the first step in the right direction. Not only could he talk to her about his feelings, but she also became the support system he needed. The medical world may not know much about how you feel, but never forget to tap into your support system. It may be a tight circle of friends or a consultant, hold on tight to them. Do not keep your feelings bottled up inside; it can cause more damage than the illness itself.
Our bodies are special and intricate works of art. They are easy, yet, also difficult to handle; that depends on how we manage them. Signs and symptoms are the body’s way of communicating to us if we listen. Dickson’s failure to acknowledge that something was wrong on time cost him unnecessary years of suffering and pain. No other person can know how we feel as we do. PoTS is a silent killer that would take every lackadaisical attitude toward the body as an opportunity to grow and cause havoc.
Lastly, Dickson had a final victory by not dwelling too much on the damage PoTS caused. He experienced a drastic and negative turnaround, but he did not allow that to depress him. He chased after the single window of hope that remained like his life depended on it (it did), even though it took him a long time. Dickson could have remained in the shell of a fourteen-year-old, but he did not. It took him a lot of courage, but he knew that talking out was better than dying in silence. Afterward, he relentlessly continued looking for an explanation until his tenacity yielded results. Dickson knew that he had a life-long battle on his hands, but he did not dwell on that.
Amid all the doubts, lack of explanation, and pain of several tests, always focus on staying true to yourself. Stick to what your body is telling you, and the needed help will come in no time.
