By Emily Yzquierdo
“It’s just anxiety.” This is a phrase I’ve come to loathe, and it is too often what patients, particularly women, hear when seeking medical attention. And it needs to stop.
While lying on the floor, feeling my body turn into a stranger, the wave of adrenaline surged, my heart rate rose to 160 then quickly plummeted in half, rising and falling over and over again and pushing the edges of my vision to darkness. I felt like I was at the end.
What could I have done to bring on this torment, the feeling of tremendous fear like I’m stuck in place awaiting a chasing bear? A few minutes prior, I had been eating pizza and enjoying a movie with my husband. It was a completely normal, stress free moment that had been interrupted by the unexplainable workings of a medical condition that recently swept my life up into a raging storm of unpredictability.
These episodes began six weeks prior in addition to symptoms of extreme fatigue, low blood pressure, memory loss, tremors, low body temperature, and vertigo. The first time, after an hour of these symptoms, my husband called for an ambulance. I ended up in the ER three times in the span of eight days, each time with the same complaints, each time not receiving any concrete answers as to what was happening to me.
It’s just anxiety. You must be having panic attacks. You’re just stressed. That’s what I was told after being admitted to the hospital. Six days as an inpatient being provided minimal treatment and feeling like a prisoner, I was growing tired of doctors dismissing the very real and terrifying thing that was happening to me. I knew that the judgements they passed were inaccurate, but it felt as though they wouldn’t listen to the truth.
On the sixth day, I underwent a title table test. The test itself is straightforward enough. I was strapped to a table and changed from a lying position to nearly standing to measure the changes of my heart rate and blood pressure. I thought I was doing okay until about fourteen minutes in when I realized my breathing started to change and become heavier. Then the fuzziness, the tingle of darkness that creeps up the back of my head before my vision turns to black, appeared. My head felt heavy, and I warned the nurse I was going to black out. With those words, my eyes closed and the world fell away.
When I woke up drenched in sweat with a doctor and two nurses standing over me, I knew I had failed the test. The nurse told me that my heart rate had steadily risen while in the standing position. When I felt ‘fuzzy’ my heart rate hit 140, then dropped rapidly into the thirties and thrusted me into a fainting spell. I was returned to my hospital room where the tremors began, and my fluctuating heart pushed me again to the brink of unconsciousness. That’s when I was finally diagnosed with Postural Orthostatic Tachycardia Syndrome (POTS) in addition to neurocardiogenic syncope.
Neurocardiogenic syncope (also referred to as vasovagal syncope) is a long, clinical word for a fainting spell. It is simply the sudden drop in heart rate and blood pressure that leads to fainting and not an unusual secondary condition for those with POTS. Now, POTS is a little more complicated. And, as I’ve come to learn, not very well understood by the medical community.
POTS is one of many disorders that fall under the term dysautonomia, which pertains to the dysfunction of the autonomic nervous system. POTS is not a new condition, however, according to Dysautonomia International, the term was not used until 1993 when Dr. Philip Low and his team of researchers at the Mayo Clinic first introduced it. POTS affects a person’s heart rate when they change from sitting to standing or even from lying down to a sitting position. It also inflicts a slew of symptoms that disrupt daily life including heart palpitations, headaches, nausea, tremors, exercise intolerance, lightheadedness, fatigue, brain fog, and pooling of blood in the lower extremities.
According to John Hopkins Medicine, approximately one to three million Americans are suffering from this disorder. With that many people dealing with this often debilitating condition, why have so few of us heard of it? There are a number of reasons that contribute to this lack of knowledge and awareness. For example, limited research and testing is performed and POTS is not always taught in medical school. Most doctors, in fact, have little experience in identifying and treating POTS and some have never even heard of it. However, what I’ve come to experience and understand from others with this condition, is there is an even more detrimental reason why so few know much about it and many are left undiagnosed…stigma.
It is not unusual for POTS patients to be incorrectly diagnosed with anxiety or panic disorders even though studies have shown they do not tend to have higher levels of anxiety than the general public. Although many symptoms of POTS are similar to the symptoms experienced with anxiety, POTS is not caused by anxiety. Treating it as an anxiety disorder only leads to longer wait times to receive proper treatment and extended, unnecessary suffering.
Anxiety is generally regarded as a female problem. It is true that women are twice as likely than men to be diagnosed with anxiety, and one in five Americans are diagnosed with the disorder as reported by the U.S Department of Health and Human Services. It is estimated that nearly 80% of those with POTS are women typically between the ages of 15-50 years old. So, it’s easy to see where the connection is made. A young woman presents to a doctor with an erratic heart rate, trouble concentrating, difficulty sleeping, urinary and stomach problems, and it is an obvious assumption that she may have anxiety. However, even when the patient takes anxiety medication and heeds the advice of doctors, the problems persist. Yet, doctors seem quick to hold on to the belief that the patient’s symptoms must still stem from anxiety. The patient is left with a dilemma to either concede and believe their symptoms are psychological or challenge the doctor and push for further evaluation.
Although anxiety is common, it is not a catchall condition to be thrown around to explain away persistent medical complaints and concerns. From my experience, not being believed can be more frightening than the debilitating effects of POTS. Prior to these episodes, I walked five miles a day, often hiking and biking on the weekends. I couldn’t understand how I went from extremely active to struggling to manage basic tasks. Still, the more I thought about my long term health, the more I realized that these issues were there all along. I have endured unexplained fatigue, black outs, low blood pressure, and gastrointestinal problems for two decades. Remembering all those years I was told by doctors that I was ‘fine’ brought on a sense of relief and anger. I finally felt validated, that I knew something was wrong and I was right. But I was so angry that it had taken so long to get an answer. Why wasn’t I believed? Why did doctors not take me seriously? Why is it acceptable for medical professionals to write women off?
Women’s health issues being disregarded as anxiety is really an extension of how society has and continues to treat women who push back and ask for better, for the truth, or at least the help to find the truth about their health. We have a bad history of labeling women as being ‘dramatic’ when, in fact, they simply want to understand what is happening with their bodies. Even the term ‘hysteria’ that is commonly used to describe someone who is acting out of control or irrationally comes from the Greek word for ‘uterus’.
Gender bias is real. A 2018 study was conducted and published in the National Library of Medicine on gender bias as it relates to pain. It was found that men are more often considered ‘macho’ in tolerating pain while women are deemed ‘too emotional’ with chronic pain in women being attributed to psychological factors instead of physical. Women are silenced and deflated into believing that their concerns are invalid and are prescribed treatment that is not suitable to effectively treat their condition. Their concerns are disregarded because it is easier to make assumptions than dig into the difficult to understand.
Gender bias is a persistent disease in our healthcare system that is a potentially life altering, life ending threat to women. Women will not receive adequate treatment in a timely manner until the stigma is removed. How many women have to live with pain and fear and uncertainty because they are not given the basic human kindness to simply be heard and believed? When can they finally be given the help they so desperately want and deserve to receive?
This is a plea to doctors and nurses and anyone else who has the influence to help those seeking advice and treatment. Please listen to your patients. Believe what they are telling you. Care for them in those moments when they are afraid just as you’d want to be cared for. Open your mind to the possibility that the typical diagnosis isn’t the correct one.
I never thought at my age I’d be in a position having to advocate for my health. Yet, this is far too common for too many people with chronic or difficult to diagnose disorders. When a patient seeks help, remember that they have lived in their body every moment of their life. No one knows their body better than they do. What they want from you is compassion, understanding, and perseverance to fix what is broken. The power you have to show empathy and hear them, to truly listen, is a miracle to those who’ve been long dismissed.