Our Views on Illness and Disability Must Change.
Five years ago, I had the privilege of gracing the cover of Southern Maryland Woman Magazine for my activism with mental health awareness. In that photo, I was wearing a black dress and was standing on my own two feet. There was no wheelchair, central line in my chest, or nasal cannula helping me breathe. So, what happened? In a wild turn of events, everything I thought I knew about my body and mind changed.
I was misdiagnosed. How could this happen? How could doctors miss my genetic illness and several other comorbidities? I don’t doubt for a second that medical bias was to blame. My former doctors frequently parroted out phrases commonly heard by young women: “You’re too young to be sick,” “You look fine to me,” and “You’re just anxious.” Despite the range of strange symptoms, doctors told me that my problems were likely psychosomatic even with abnormal test results. For most of my life, I was misdiagnosed as being mentally ill. But that wasn’t entirely true. I was physically sick…because I was born ill. I just didn’t know.
For as long as I can remember, I’ve had pain—pains in my stomach, back, and head…everywhere. The thing is, I thought the discomforts I felt in my body were normal.
I cried inconsolably every day in my first month of life because my stomach was not absorbing my mother’s breast milk. As a result, I was not gaining weight. As a 5-year-old, I had such dramatic nosebleeds that my clothes would look like evidence from a crime scene. At around 8 or 9 years old, I developed an aversion to food. The stomach pains I would get when eating further exacerbated the “perfect storm” in developing anorexia at such a young age. I moved from the US Virgin Islands to Southern California, which was a significant culture shock—being the new, brown girl who looked different and even spoke differently made me the target of bullying. I now know that the trauma I experienced in adjusting to a new culture and being bullied was not the only thing that contributed to my eating disorder as a child. As I went into puberty, I started having recurrent bladder infections and strep throat several times a year and quickly caught common viruses. And even though I had the flu vaccine, I would still get the flu almost every year. Always being sick was such a regular thing for me, but when I did bring it up to medical professionals as a teenager, it was dismissed.
As I entered adulthood, my health issues worsened. I spent several years visiting neurologists who would perform one or two tests, give up, or diagnose me with migraines. I had some luck when one found that I was having partial, Jacksonian seizures and had an 8mm brain lesion—but my doctors didn’t know why. They thought I had MS, but the results were inconclusive, and they gave up after that. I had a gynecologist who performed exploratory surgery and found that I had endometriosis. However, her inexperience with endometriosis caused it to spread to my bowels, bladder, and appendix. Endocrinologists even discovered a small tumor on my pituitary gland. And with all that information and my symptoms, no medical professional thought to check for systemic conditions. Instead, they told me that even with those things, I still looked healthy. It wasn’t until I ended up in the ICU following life-threatening complications from a second endometriosis surgery that doctors realized that my body wasn’t like everyone else’s.
Within weeks, I became a wheelchair and oxygen user and got my first central venous catheter (also known as a chest port). Although it seemed sudden to people outside of my immediate circle, this decline had been going on for years—and the months prior were particularly hectic. I had lost more than 30 pounds in 6 months and would sometimes sit on the floor at work because I would feel faint. Suddenly, everything I had been experiencing for more than two decades made sense.
At 29 years old, I was finally diagnosed with Ehlers-Danlos Syndrome and Autoimmune Autonomic Ganglionopathy/Dysautonomia. Ehlers-Danlos Syndrome (EDS) is a genetic connective tissue disease. Since everything in our body is constructed of connective tissue, Ehlers-Danlos Syndrome is a recipe for bodily disaster. Simply put, my body is like a house made with poor materials. Even though the floor was creaking, and the roof was leaking, it looked great on the outside. However, over time, the house made with faulty materials will eventually fall apart—the floor will give out, the electrical lines and plumbing will fail, and it will no longer function. In essence, my body is a poorly built house—many of the comorbidities that I have directly result from having defective DNA. The Autoimmune Autonomic Ganglionopathy (AAG) is likely related to my genetic illness. AAG is an extremely rare form of dysautonomia. It causes my immune system to attack my autonomic nervous system, affecting functions like digestion, respiration, heart rhythm, and dozens of other things we don’t consciously think about. As you can imagine, it is relatively common for neurological conditions to affect behavior and mental health. Sadly, mental illness misdiagnosis in physically ill women is not uncommon.
Implicit medical bias about a person’s age, race, gender, disability, sexual orientation, identity, and even mental health status leads to prolonged suffering, post-traumatic stress, and even death. An alarming 30-50% of women diagnosed with mental health issues really had a physical health condition. The psychological diagnosis delayed an accurate diagnosis up to 14 times more than if they had been misdiagnosed with a physical illness. These statistics are even higher among women with an underlying neurological condition, frequently labeled as having hysteria. Once a mental health diagnosis is on your chart, the likeliness of being dismissed massively increases.
Mental health stigma prevents medical professionals from seeing the patient as a whole person and minimizes any physical distress as a plea for attention or a complication of an unhealthy mind. Frankly, Mental health stigma is dangerous to everyone, even if we don’t suffer from a mental illness ourselves. Being a young woman of color, I understand the helplessness that arises when you’re begging doctors to listen. It is a fight for your life of epic proportions.
The medical professionals I see now (many from top research hospitals) do not believe that I ever had an anxiety disorder, borderline personality disorder, or even major depression. The licensed psychologist I have now been seeing for nearly three years disagrees with the labels I was given. I was diagnosed with those conditions after only 1 or 2 visits with a psychiatrist and then was pumped full of pills that never worked. Mental health conditions typically take months to diagnose. Still, I was diagnosed immediately— after talking about disassociation, mood swings, irritation, feelings of doom, and severe anxiety, which are common in neurological conditions. Instead, my psychologist believes that I am experiencing post-traumatic stress and grief from years of medical gaslighting and mistreatment. Ironically, implicit medical bias can create mental health issues that weren’t present before.
So, what do we do about this silent epidemic of implicit medical bias? The most critical thing medical professionals can do is practice empathetic and active listening. Part of the problem is that medical students have learned that when they “hear hoofbeats to think of horses, not zebras.” This phrase means that when a patient comes in with symptoms, to look for the most common cause. Medical students become doctors who believe it is unlikely that “zebras” (those with rare conditions) will ever come into their offices. Unfortunately, rare, and chronic diseases are grossly underdiagnosed because of this. Many rare conditions may not be rare; they’re just rarely diagnosed. The most important thing a doctor can do is listen to their patients, and if they don’t know the answer, it is their responsibility to help them find it—even if that means referring them to someone else. It is doubtful that someone is lying or exaggerating their symptoms and making that unsubstantiated claim can have deadly results. Secondly, medical professionals must understand that illness does not have a minimum age requirement. If that were the case, children and young adults would never face illness. For perspective, 43% of children and teens have a chronic disease, so the idea that one can be “too young” to be sick is not rooted in fact. Third, appearance has very little to do with what is going on inside someone’s body. Most people with chronic illness have an invisible disease—but invisible does not mean imaginary.
Lastly, American healthcare and societal views on illness and disability must change quickly. Socioeconomic status, for-profit medical systems, prejudice, mental health stigma, and ignorance make access to healthcare difficult. Substantial change only occurs when compassion and education replace stigma and bias. We also need to remember that medical professionals make mistakes. They are practicing medicine; It is okay to seek a second opinion outside of your local medical system and advocate for yourself. Keep all your records, take notes, ask questions, and request the tests you think you need. If they refuse, make sure you document that and have them write it in their records. No one knows your body better than you, and if something seems off, you’re probably right. It shouldn’t take nearly dying to finally be believed. I am very fortunate to now have an incredible team of doctors consisting of more than 14 specialists, who not only empathetically listen to me, but also do everything in their power to assist me through my conditions. I also have an amazing, home nurse who goes above and beyond each week that she sees me. There are excellent, compassionate medical professionals out there and they are worth looking for.
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