Lupus and Mental Health | Patient Stories
Sick, Misunderstood, and Dismissed: How Lupus Impacts Our Bodies and Mental Health
There has been one sentence consistently repeated to me throughout my years working, writing and conducting interviews with those who have lupus.
“Doctors told me it was in my head.”
The first time an interviewee told me this, I felt a sense of camaraderie because I had experienced the exact same thing.
When I was 19 years old, and dealing with the life-threatening symptoms of untreated lupus, I was constantly told by emergency room doctors that my symptoms were anxiety and “all in my head.”
But what I thought would be a singular, unique experience turned out to be a common one for those in the lupus community.
My mental health was at its lowest during the time I was in and out of hospitals. Not only was my body falling apart, but nobody in the medical sphere seemed to believe my condition was as serious as I made it seem.
A 2023 research paper conducted by Reumatologia found that depression, anxiety, and stress are common in patients with SLE, and the quality of a patient’s life is significantly affected.
Similarly, a 2011 study by J Clin Psychiatry found that psychiatric symptoms are present in the majority of patients with SLE. Depression (in up to 39% of patients) and cognitive dysfunction (up to 80%) are the most common psychiatric manifestations; because lupus impacts major organs, the brain is no exception – flares in our mental health can be symptoms of the disease being active.
So, according to multiple research studies, my own and several others’ experiences, it is fair to say mental health does play a part in lupus and vice versa.
Natasha’s Story
I reached out to a social media group dedicated to those with lupus across the world, inquiring if anybody had a negative experience receiving a lupus diagnosis due to their mental health. Within a few minutes, I started to receive feedback from people.
One of the first people to respond to my inquiry was 35-year-old Natasha Dominix from Nova Scotia. Natasha started experiencing symptoms of lupus at a young age, as she grew up with chronic migraines, rashes, and heightened sensitivities to light.
“I was told I had an overactive imagination,” says Natasha.
At 15 years old, Natasha was told by a physician that her symptoms were actually due to a learning disability, ADHD, and possible bipolar disorder.
“During our routine check-ups, he would ask about improvements, to which I consistently reported back the same symptoms and feelings of distress,” she says.
“Unfortunately, his response was often to dismiss my concerns and increase my medications. Eventually, this led to me collapsing in class one day and resulted in being taken off this medication. I still vividly remember his dismissive demeanour.”
This situation caused Natasha to refrain from telling doctors and medical practitioners in the future about her mental health and symptoms, due to the fear of being invalidated.
When Natasha was 28, her symptoms grew more severe – and doctors could not provide her with any answers. Natasha had to capture every flare-up, write down her symptoms, and explain them over and over to doctors.
“I felt so isolated, frustrated, and crazy at times. Not only was I exhausted from the medical issue itself, but from the fighting for my diagnosis.”
That time was difficult for Natasha, and her mental health was significantly impacted, not only because of the lack of understanding from doctors, but, the disease itself was taking over.
As Natasha grew older, she became more trusting of her instincts and more assertive with her doctors. At 32 years old, her symptoms became life-threatening after a severe gallbladder attack. This flare-up is what finally kick-started the progress of diagnosis.
Throughout the process of self-advocacy, Natasha learned she was not alone in her experiences with mental health and dismissive doctors. Like me, she found solace through community support and practising positive self-care and mental care.
Dr. Rosalind Ramsey-Goldman of Feinberg School of Medicine at Northwestern University explains that mental health has been neglected in the past when it comes to lupus care and treatment.
“Throughout my career, it wasn’t even on the radar,” says Dr. Rosalind Ramsey-Goldman. “There is definitely an increased interest in mental health both in clinical care and in research.”
Patient-Reported Outcomes (PROs) have helped shape the voice of patients and their mental health experiences related to lupus for research, according to Dr. Rosalind Ramsey-Goldman.
However, she acknowledges there is no clear-cut solution as “The body is trying to stay resilient despite the physical and mental stress.”
Alexa’s Story
A 2017 study conducted by the Canadian College of Health Leaders found that mental illness stigma among health care providers creates serious barriers to access and quality care. The consequences of this are that patients do not receive the treatment they need, as their symptoms are not taken seriously or considered at all.
Likewise, patients who are dismissed due to their perceived mental health delay receiving medical care again, putting themselves at risk.
This is exactly what happened to 25-year-old Alexa Smith from Florida, who wanted to share her experience in the United States.
In 2024, she was dealing with intense dizzy spells, fevers, chronic fatigue and heart palpitations.
“I have celiac disease,” says Alexa. “I thought it was maybe that. But, once my symptoms got worse, I realized something bigger was happening.”
Concerned, Alexa informed her primary care doctor about her condition and was quickly dismissed.
“They basically shut me down,” says Alexa. “And told me it was my anxiety or my celiac disease.”
But Alexa knew something more serious was going on, and by this point, skin rashes and hair loss were prevalent.
Unhappy with the care she was receiving, Alexa made appointments with another doctor to find a better primary doctor.
“This doctor didn’t know what celiac disease was, so it was a bit difficult,” said Alexa. “But I explained my symptoms, and she gave me a bunch of blood tests, and everything came back normal.”
After going back and forth between a neurologist, a cardiologist and a gastrologist, lupus was mentioned as a possibility.
She returned to her new doctor with the information and specifically asked for an Antinuclear Antibody (ANA) test, which came back inconclusive.
“I knew I had to see a rheumatologist, so I wrote my doctor a letter stating why I needed one.”
During a particularly awful flare-up, Alexa showed up at her doctor’s office essentially to ‘prove’ something was wrong. The nurse practitioner immediately validated Alexa’s concerns and gave her an ANA test. And of course, the test came back positive.
After months and months of fighting and advocating for herself, Alexa was diagnosed with lupus by a rheumatologist.
“Fortunately, my rheumatologist today is phenomenal,” said Alexa. “She told me, it’s unfortunately very common for lupus patients to be told their symptoms are in their head, or just anxiety.”
Sunita’s Story
Similar to Alexa and Natasha, 40-year-old Sunita Mandi from Cameroon, Central Africa, lupus symptoms were not taken seriously and dismissed as anxiety. While living in the United States, Sunita’s fevers, intense headaches, pain, and fatigue had worsened. Initially, they diagnosed her with malaria and anemia, but soon realized that something else was wrong due to the treatment not working.
“The doctors said it was just my hormones acting up, or the stress due to school,” says Sunita, as she was studying to become a nurse.
However, Sunita knew this was not the case, and her school workload was not the reason for her decline in health. To prove everyone wrong, she wrote and passed her board exam and graduated from nursing school, yet her symptoms persisted.
“I knew something was wrong with my immune system,” she says. “It wasn’t my stress.”
Then, Sunita uprooted her life and decided to leave the United States to pursue a career in nursing in Milton, Ontario. Unfortunately, her health continued to decline during the move, and she was in and out of Ontario hospitals. However, this time around, the rheumatologist assigned her an ANA test.
“That’s how I found out I had lupus,” she says.
Today, Sunita’s health is steady, despite the ups and downs the disease has on her daily life. She remarks that her diagnosis and lupus treatment in Canada, for the most part, has been positive. Sunita works a busy job as a field supervisor in the medical industry; however, this time around, her lupus symptoms are being boiled down to stress intolerance.
Why Empathetic Care Matters
Once I was officially diagnosed and referred to a lupus clinic in Toronto, my experience with rheumatologists and the medical sphere completely changed. My rheumatologist not only believed me, but he also asked me about my mental health and encouraged me to take care of my mind and body.
Natasha explains that over the last year and a half, not having a thorough rheumatologist who considers her mental and physical health has caused her some frustration.
“I believe both myself and my current medical team would feel stronger with a more thorough rheumatologist,” she says.
Similar to my experience, after Sunita and Alexa’s experience with the medical system improved once they found rheumatologists, they felt valued and listened to their concerns and symptoms. Alexa explains, having a doctor who validates her concerns and anxiety rather than dismissing them has positively impacted her outlook.
Reumatologia states, “Lupus is likely to affect psychological, social, and physical aspects of a patient’s life. Therefore, it is important to evaluate the patient’s perspective and quality of life in addition to disease activity.”
It is imperative for those of us with lupus to have our mental health symptoms addressed and assessed. Those with lupus symptoms should not be dismissed because they have a mental health diagnosis or are showing characteristics of one.