A sudden and immense fatigue derailed his once promising academic career, and despite years of incapacitating symptoms, Kade has yet to find a satisfactory diagnosis
A patient's medical record, a comprehensive summary of all their past encounters and diagnoses, can be both a blessing and a curse.
On the one hand, it allows any doctor to easily access many years' worth of information about medical visits, specialty consultations, procedures and prescriptions, helping to coordinate and streamline care.
But it can also lead to diagnostic bias. Kade Frazier has learned this the hard way. A patient with an undiagnosed condition, or one he feels has not been correctly diagnosed, can find himself pigeonholed, with each new doctor agreeing with what others have concluded in the past, seemingly uninterested in considering other possibilities.
Kade's interactions with the health care system have been colored, in one way or another, by his mental health history. Starting in his teenage years, he put tremendous pressure on himself to succeed academically. He took college-level classes when he was a junior in high school, earning straight As. He was interested in science and planned to eventually get a PhD in biochemistry.
Outside of school, his pursuits included bodybuilding and nutrition. Kade is transgender, and prior to transitioning at age 18, he sought to eliminate as much body fat as possible in preparation for chest surgery to remove breast tissue. Meanwhile, he was under financial stress trying to pay for school and save up for the operation. As the costs mounted, his anxiety spiraled and his sleep suffered.
"I moved out of my parents' home, I moved into my own new place, and I had menopause and puberty all in one year."
Things came to a head during his first semester of college. He continued to push himself academically and physically, at the expense of his mental wellbeing. His obsession with fitness and nutrition transformed into a restrictive eating disorder—he would go days at a time without food. A deep depression crept in, further fueling his eating behaviors.
"You're not going to be able to be happy if you don’t feed yourself," Kade explained. "That spirals in the way that depression does, you know, you feel bad, and then you take bad care of yourself."
At the same time, he had started hormone therapy for his gender transition, which caused discombobulating changes in his mood and physical appearance. He felt like too much was happening at once—perhaps he had bitten off more than he could chew.
"I moved out of my parents' home, I moved into my own new place, and I had menopause and puberty all in one year," he said. "It was just a lot."
"I was so unstabilized in my life that everything was just sort of chaos."
He dropped out of school. The next two years of his life involved multiple psychiatric hospitalizations for suicide attempts, and a prolonged involuntary admission for treatment of his eating disorder. He was also diagnosed with borderline personality disorder.
During that dark time, Kade says, he couldn't envision a future for himself. Or, even worse, he worried that this might be his future: suffering from crippling depression, starving his body, bouncing in and out of psych facilities.
But gradually, as he committed to prioritizing his mental health and eliminating stressors from his life, things came into focus. His mood stabilized. He found an antidepressant—venlafaxine—that worked particularly well for him.
"I got everything back to where I was feeling like, at the very least, I could start working my way up to where I was," he said.
As he set to rebuild his life, he was careful not to take on too much all at once. He enrolled in community college, resuming some of the science courses he had left behind several years before. He found that he was still a strong student. Classmates would come to him for help, and he was hired as a teaching assistant for a chemistry course. He remembers thinking, "I can see myself having a future, I can see myself getting my feet back under me."
He was happy at community college, but he knew his academic and career ambitions would require him to graduate from a four-year university. Now was the time, he thought, to try again. He re-enrolled at the University of Minnesota, the same school he had dropped out of five years before, with a plan to start classes in the fall.
A few weeks before he was to become a college student again, a fire broke out at his parents' home, causing significant damage and rendering the house uninhabitable. His parents were forced to move into a hotel. Kade's mother, permanently disabled from a back injury and with limited mobility, was mostly confined indoors, so Kade tried to visit when he could to lift her spirits. He would bring snacks and they would have a "picnic" in the hotel room, sitting and talking for a couple of hours.
Having grown up in California to an Italian family, one his mother's favorite foods was fresh figs, but she found them hard to come by in Minnesota. Kade located a store that carried them and bought some, and he planned to surprise her with them at their next picnic.
On the morning they were to meet, before he left his house for the hotel, Kade got a frantic call from his father, telling him to come as soon as possible. "It's bad," he warned Kade.
He arrived at the hotel. His father took him aside and told him the devastating news: His mother had gone to sleep the night before and never woken up.
"It was out of nowhere," he said. "I had my prosciutto and figs ready to go. I wasn't expecting my mom to be dead."
It was an emotionally charged time, and though he was in an improved mental state, things were still delicate.
Kade's mother was only 54 when she died. She had had a hard life, made more difficult by her disability, and she took morphine for pain control. The immediate assumption was that she had accidentally overdosed, but an autopsy ruled that out. Her cause of death remained unclear, however. To this day Kade does not know precisely what happened.
In retrospect, Kade should have taken some time off to process all this; he acknowledges that now. It was an emotionally charged time, and though he was in an improved mental state, things were still delicate. Amid coordinating the autopsy and funeral arrangements, he matriculated at university. "It's not the best foundation," he thought at the time, "but I can still do it."
He turned out to be wrong—it was too much to simply bury and move on. For the first few weeks Kade felt like he was managing, but then things took a turn. He doesn't remember much about this time; he's not even sure if he completed the semester or not. But at some point, he felt like his body had been pummeled by the worst flu he'd ever experienced—"I just needed to rest, but no amount of resting ever helped." He waited, but the symptoms persisted. He found himself utterly helpless, unable to study, socialize, exercise. For the second time, he dropped out of school, putting his dreams on hold.
Kade was overwhelmed by a fatigue like he had never known before. It wasn't the mental tiredness that came with severe depression—he knew what that was like. This was more bodily, a feeling of being "physically drained," like he had run a marathon without even getting out of bed. He likened it to when he was in the throes of his eating disorder and he would go several days without food. His energy was depleted. Just typing out a text on his phone could feel like a monumental task.
Kade's initial thought was that this was just a physiologic backlash to the tidal wave of stress that had hit him—his body telling him that he needed to slow down and recharge. So he did. He focused on resting his body and mind and doing as little as possible, hoping that this might trigger a reset.
Weeks passed, then months. He didn't get better. What little power he could muster during the day he spent on mundane chores, like cooking, dressing and cleaning. After that he'd be worn out and have to the spend the rest of the day in bed.
"It's just like, I have no mental energy and it's all used up doing things that I have to do," he said. "It's like I'm constantly having to ration every drop of energy I have."
Eventually, these symptoms led him to a doctor's office. He ended up being evaluated by a few different specialists: a rheumatologist, an endocrinologist, a sleep specialist. They briefly considered that he might have chronic fatigue syndrome (also known as myalgic encephalomyelitis), but this was excluded because of his lack of "post-exertional malaise;" in other words, his symptoms did not worsen depending on his level of activity. In the end, they settled on a diagnosis of fibromyalgia.
Kade felt shortchanged by his diagnosis. He thought that the doctors who evaluated him had not done their due diligence.
Fibromyalgia is a syndrome characterized by diffuse body aches and pains, along with fatigue and cognitive disturbances like insomnia and difficulty concentrating. The symptoms are thought to be related to hypersensitization of the nervous system, such that the brain inappropriately amplifies stimuli that are transmitted to it. There is no specific test for fibromyalgia—the criteria for diagnosis are mainly based on history and physical exam. Likewise, there is no cure, only medications and lifestyle modifications that have been shown to help.
Kade acknowledged that much of what he was going through did sound like fibromyalgia, but he nevertheless felt shortchanged by the diagnosis. He thought that the doctors who evaluated him had not done their due diligence—they had arrived at their decision too quickly, too easily, without trying to exclude other illnesses.
Fibromyalgia is more common in women and is often associated with concurrent anxiety and depression. Because of this, and because there is no conclusive test for it, some practitioners in the medical community write it off as a primarily psychogenic condition—a manifestation of a psychiatric disorder, as opposed to an entity unto itself. Kade felt this especially acutely when he went to see the rheumatologist, who was brusque to the point of rudeness. Kade's plight, and the suffering that came with it, were quickly dismissed. Within minutes, he was shown the door.
"Did I just come in and you saw that I was female assigned at birth, and you decided I'm some lady with fibromyalgia?" Kade thought.
Kade educated himself, reading up on fibromyalgia, even delving a bit into the online communities of people living with the disease. He understood why it might be a fitting diagnosis for him. He learned about the theory of the "straw that broke the camel's back," which posits that fibromyalgia arises as a physiologic reaction to a period of unbearable stress in one's life. He had certainly gone through that.
"I understand the kind of tax that mental stuff can have on your physical perception," Kade said. He didn't necessarily disagree with the diagnosis, but he also wasn't fully on board.
There was, of course, the nagging fact that Kade really doesn't suffer from pain, a hallmark of the syndrome. Though it is no longer part of the diagnostic criteria for fibromyalgia, some providers still do tender point testing, which consists of pressing a finger into 18 focal areas on both sides of the body to see if it elicits disproportionate pain. Kade didn’t find any of the areas particularly tender, until the doctor jammed her thumb deep into his hip joint, hitting bone and making him jump.
"Pain?" she asked. He grimaced. "No."
"I'm gonna say yes," she said.
When he mentioned the incongruence between labeling him a fibromyalgia patient and his lack of pain, he was met with roundabout answers.
"They were like, 'Well, each person's pain is relative, and, you know, one person's pain is another person's soreness. Have you ever been sore in your entire life, anywhere on your body, ever?'"
"I mean, yeah," Kade replied. Who hadn't?
"And then they're like, 'See? You have fibromyalgia.'"
Kade sat with this for a while. He didn’t see another doctor for a long time, or seek any more opinions—going to the appointments had been hard on him, and he didn't think the outcome would be any different a second time around.
"It just feels like as soon as you're diagnosed, everything is confirmation bias," Kade said.
He did make a good faith effort to engage with the diagnosis and do some of the things that had been recommended to him, to see if they helped. He tried graded exercise, a program of gradually escalating physical activity. He emphasized periodic rests and good sleep. He optimized his diet. But he didn't see the results he'd hoped for.
"Their whole solution [for treating fibromyalgia] is chillax to the max and eat a healthy diet," Kade said. "I've chillaxed to the max and my diet is as good as I can make it. I still feel miserable."
Eventually, though, someone convinced him to seek care at the Mayo Clinic, which was not too far from where he lived. He allowed himself to hope that maybe this time would be different—maybe he'd be taken more seriously, and doctors would give his situation a little more time and thought.
To his dismay, he was immediately triaged into their fibromyalgia "pipeline," and he was referred to the same specialists he had seen the first time around. He underwent much of the same testing, and the conclusion was what he had expected.
"It just feels like as soon as you're diagnosed, everything is confirmation bias," Kade said. "You're not taking in the information from the patient and then using that to diagnose them. The patient comes in, and you've decided they have fibromyalgia, and you try to lead that to a diagnosis; you try to force them into saying yes."
"It bothered me, because it was like, did you really rule out everything?"
Kade is unfortunate to fall into a diagnostic gray area in modern medicine. There are many patients out there like him who suffer from a host of chronic and often disabling symptoms which do not have a readily available medical explanation or effective treatment.
In the absence of an organic and diagnosable medical condition, it is easy for providers to chalk up unexplained symptoms to psychiatric illness, or even to make a psychiatric diagnosis based on them. Rather than ask a patient if he feels depressed, the patient is told his crippling aches and fatigue are due to depression.
And even with conditions like fibromyalgia or chronic fatigue syndrome, which are well described yet poorly understood, doctors can become frustrated when patients don’t seem to get better, despite the many medications and lifestyle recommendations they throw at them.
The truth is, it's not the patients they are upset with, but the limitations of their own understanding of the disease and lack of adequate tools to treat it. One of the hardest things for a doctor to tell a patient—and for a patient to accept—is that they may never feel fully well again, and that managing their symptoms is probably a more realistic goal than eliminating them entirely.
For Kade, the active, academically gifted, physically fit version of himself now seems like a distant memory. Most of his days are indistinguishable from one another. He doesn't study or work, though he would like to. He lost his social security, which was his only source of income, and now lives with a friend rent-free. "I just try to exist," he said.
He is torn between trying to summon the drive to continue pursuing an alternative diagnosis, which he is skeptical he would even be able to do, and settling into an acceptance that maybe this is the way things are going to be from now on.
"It feels totally crazy to just sit here and decay and lose my life when I don't necessarily think things have even been sufficiently excluded," he said. "But I can't even advocate for myself because I have such a hard time having energy."
He also wants to protect himself from the disappointment and despair that another fruitless bout with the medical establishment might yield.
"Sometimes trying to pursue a cure or a cause or a treatment, you're sacrificing your quality of life," he said. But then again, when it comes to his quality of life, Kade doesn't have much to lose.
For the time being, he is stuck in this terrible limbo.
"I'm sad because I'm not diagnosed with something that seems correct, and I'm not being treated for something that could be treated," he said. "But if I just constantly obsess over my symptoms, then I'm also gonna be miserable."
Kade thinks about his mother, who died suddenly and unexpectedly at a relatively young age. He wonders if maybe the two of them share an as-yet undiagnosed condition that will also, eventually, get the better of him. He believes there's a chance that over time his disease—whatever it is—will more plainly declare itself, allowing him to put a name to it and, hopefully, get treated.
"It feels like at this point getting better is not…" Kade paused, thinking.
"I don't see that happening."