My Lyme Disease Diagnosis Took Forever Because of Mental Health Stigma
She was told for years that her constant fatigue was caused by her mental illness issues. Finally, she received a diagnosis of chronic Lyme disease.
In a small lakeside town in upstate New York, I sat in a doctor’s office next to my mother, anxiously awaiting the results of blood tests taken a few weeks earlier. I was 16 years old, in pain, and sleeping through my summer break.
Originally, upon hearing my symptoms, the doctor was concerned and compassionate. She promised to do a full workup and search diligently for the reason I was struggling to get out of bed each day, falling asleep by seven each night, and seeming to have been in a nearly constant state of pain and malaise.
On this day, the doctor seemed relieved, eager to share her results with my worried mother and me.
“So,” she said, smiling at my chart, “your blood work came back completely normal.”
She paused, glancing at my mom, and then back at me, “It says here you have a diagnosis of depression and anxiety. Are you continuing to treat that? My suspicion is that’s the cause of all your fatigue.”
She smiled again, as if she was proposing a simple solution to a complicated question.
Suddenly, all of the time spent wondering, all of the hope I’d felt, the waiting and praying for a diagnosis or answer, all of it disappeared.
She doesn’t believe me, I thought to myself.
I bit my lip to fight back tears as we thanked her and headed to the car.
Once in the car, I began to sob. How unfair, I thought, how embarrassing. I am sick, I feel sick, yet once again, another doctor is telling me this isn’t physical illness, it’s related to my mental health.
I felt immensely frustrated, convinced I knew my body better than the doctor, yet unable to argue because the more I did, the more I was seen as mentally unwell, overdramatic, or untrustworthy.
This scene happened again and again over the years — I would go to a different doctor, certain this time they’d see past my previous mental health diagnoses, and yet each time when the solution was not immediately visible, they’d return to my mental health, encouraging me to seek out therapy or support.
While my mood disorder was real and something I struggled with, I felt as if I knew the difference between depression and deep fatigue. Yet, again and again I struggled to feel heard and believed.
Mental health stigma
The stigma around mental illness is no secret to those of us who deal with symptoms related to mental health.
According to the National Alliance on Mental Illness, one in five adults in the United States, or almost 44 million people, experience mental illness in a given year. And for them, the stigma around mental illness is often just as destructive and difficult to manage as the illnesses themselves.
“I always say, without mental health, we don’t have health,” said Allison Abrams, LCSW-R, in a phone interview with Healthline from her home in New York City.
Abrams discussed the frequency with which she sees clients experience mental health stigma, including one client who went to the emergency room with panic attacks several times, only to be dismissed and turned away without proper follow-up care or referrals.
“I can imagine [if] somebody has on their medical record that they’ve been admitted so many times for so many panic attacks and they went in and they had signs of a heart attack, they would be dismissed,” Abrams said.
Erica Curtis, a California-based marriage and family therapist and board-certified art therapist, explained the stigma further.
“Mental health stigma is the negative beliefs, attitudes, and accompanying discrimination directed toward individuals who experience mental health challenges,” she told Healthline. “One of the many areas that people experience the negative effects of mental health stigma is in the healthcare system itself.”
Seeing the stigma firsthand
For me, the mental health stigma within the medical field was an undeniable truth.
Over and over I met with doctors who appeared relieved to find there was nothing wrong with me besides a misfiring brain. I was seen as overreacting to symptoms of depression due to my anxiety, even by those closest to me.
I became increasingly frustrated by blood tests that came back inconclusive and the shift in response I received from the practitioner once they decided it was “all in my head.”
Finally, five years after that first doctor’s appointment, I was diagnosed with chronic Lyme disease, a controversial diagnosis that manifests itself for me with frequent joint and muscle pain, swollen lymph nodes, weakness, and severe fatigue.
Chronic Lyme disease is difficult to diagnose due to the available tests largely being only able to assess whether you have been infected, instead of being able to provide insight on why the symptoms are continuing.
For many individuals, however, chronic Lyme is a harsh reality that leaves people often unable to work, in almost constant pain, and experiencing debilitating levels of fatigue.
It was a relief to find that my mental illnesses had not been the cause of my low energy and pain after all. Yet, the years of misdiagnosis and ignored symptoms had left me frustrated, hurt, and feeling as if I had lost a great deal of my youth searching for a diagnosis within a system deeply affected by mental health stigma.
Additionally, Lyme is a highly debated diagnosis. Often new doctors or practitioners will question my symptoms as being psychosomatic, even with my Lyme diagnosis.
Dr. Rosalind Kaplan, an associate professor of clinical medicine at Sidney Kimmel Medical College, stated that she thinks the issue comes down to a fundamental frustration many doctors have of wanting to help, and not always being able to do so.
“I think particularly when there are symptoms that are difficult to explain we get very frustrated with that. And we want explanations. And not everything can be necessarily stuck in boxes; we can’t always find lab reasons or anatomical reasons for things,” Kaplan told Healthline.
“Sometimes we can’t even make a diagnosis,” she continued, “I know there’s something wrong because you don’t feel well, but I don’t know what it is. Admitting that we just don’t know is really hard.”
Kaplan said when she was in medical school, she received little to no training on mental health stigma, but she feels that now the field is doing a bit better on teaching courses about stigma and mental health concerns to medical students.
For Kaplan, a lot of the work of combating stigma has to do with knowing when to admit you don’t know what’s wrong and developing a strong patient-doctor relationship.
“I think that if you have a good relationship with a patient you’ll be able to say I don’t really know the answer, I think we should try some things, but I don’t really know the answer,” she said. “But that takes a lot of work, to get to that point. And you have to be willing to do the work.”
When asked for what advice she’d give people who are impacted by mental health stigma in the healthcare field, Curtis said, “Name it for what it is. Discrimination. Remind yourself that it’s not that you are ‘overemotional’ or ‘a burden,’ ‘crazy,’ or ‘not helpable.’ Being shamed, ignored, labeled, or mistreated due to a mental health issue is discrimination.”
For me, it’s still often a constant fight to be taken seriously and to get the care needed to fight my chronic illness.
Now, years after diagnosis, I still remain grateful and appreciative of the doctors who take me seriously, listen to my symptoms, and are willing to “do the work” to help me get well.
An all too familiar story with Lyme/MSIDS, I’m afraid. This must change.