From Scientist to Patient: When Health Care Equity Becomes a Personal Struggle
Manisha Gupta, 39, has battled a constellation of chronic pain symptoms for more than 15 years. And for just as long, she’s fought a parallel battle: getting providers to believe that her pain is real.
Manisha was 23 and doing development work in India when severe bilateral sciatic pain abruptly announced itself in her life. She was rushed to the emergency room over concerns of exhibiting cauda equina syndrome, a rare but serious condition that can lead to permanent neurological impairment. Surgical intervention to decompress the spinal nerve roots is usually recommended in these cases, but because Manisha was young and alone in a different country, surgeons decided not to move for-ward. Since then, she has accumulated a number of additional injuries and diagnoses that have resulted in chronic migraine, neck, back, myofascial, and multi-joint pain. She also regularly experiences neuropathic pain throughout her entire body, including burning, electric shocks, and stabbing sensations.
After completing a PhD in social psychology, Manisha moved to Washington, D.C., in 2015, where she worked on science policy and advocacy with policymakers, researchers, and practitioners, trying to combat health disparities and the chronic pain epidemic. Her chronic pain conditions have made it difficult for her to maintain steady employment since the COVID-19 pandemic began, but she has remained in Washington, D.C., because it is one of the only places in the country where she qualifies for the health care assistance necessary to manage her disabling conditions. Manisha has faced several obstacles in her pursuit of a comprehensive pain management treatment plan.
“As a woman of color who has had multiple invisible disabilities from a young age, it can be hard to find doctors who are willing to listen and take your symptoms seriously,” Manisha says. “Women and BIPOC are more likely to be targets of bias, stigma, and discrimination when seeking access to pain care—data shows we often face longer waits to be diagnosed and are treated less aggressively for our acute and chronic pain conditions, leading to poorer outcomes and higher rates of morbidity.”
EVEN WITH TOOLS IN PLACE, DISPARITIES ABOUND
With two doctors as parents, and professional experience collaborating with medical and legal professionals, Manisha plays a very active role in her health care. In her 15 years with chronic pain, she has solicited advice from family members and friends who are medical professionals and has researched her symptoms, possible diagnoses, diagnostic tests, and treatment.
Despite that, she has repeatedly been given generic instructions such as to lose weight, exercise more, or use over-the-counter painkillers. For years, the only referrals she received for pain management were ones she researched and pushed for.
“Like many women and BIPOC, I kept getting referred to a psychiatrist when I asked for help managing my chronic pain conditions,” Manisha says. “We have to work that much harder to try to get providers to take our symptoms seriously, and offer us the same breadth of pain management treatment options as they would other patients walking into the room without questioning if their conditions are real, or if they can afford it, or if they deserve access to those services.”
SYMPTOMS DISMISSED, SUGGESTIONS IGNORED: ‘YOU’RE TOO YOUNG’
In several cases, citing Manisha’s young age, providers have told her they can’t justify referrals, additional testing, or treatments, stating that they’ve “done everything they can.”
She recalls, “Every time I would go to the doctor’s office, I would ask them, ‘Is it possible I have chronic nerve damage? Is it possible I have XYZ?’ and I was told, ‘That’d be highly unusual; you need to calm down; you’re too young.’”
She’s been told many times that her pain is in her head, that her symptoms are predominantly psychosomatic, a result of anxiety or stress. Manisha was dealing with chronic pain from her neurological and musculoskeletal conditions for more than 10 years before she was able to get a referral to pain management—and only under the label of fibromyalgia. In her experience, she says, women are frequently diagnosed with fibromyalgia when they have complex pain conditions. She has found that the diagnosis can carry heavy stigma and bias, and often halts further investigation into a patient’s other symptoms. These delays can cause those conditions to worsen and pain to become more intractable to treatment.
Manisha has also dealt with a difficult cycle for years in which she can’t get the accommodations she needs at work and her work conditions have exacerbated her pain, causing other instances of feeling under the microscope in the doctor’s office.
“I’ve had it insinuated that I’m malingering, or trying to use providers to get access to unemployment or disability benefits by asking them for help securing accommodations that could enable me to return to full-time work,” Manisha shares.
Ironically, Manisha has found that her Medicaid coverage has provided her with increased access to a range of conservative, interventional, and alternative pain management treatment options that she has routinely struggled to get covered by top-tier commercial plans in the past. While being dependent on Medicaid comes with its own challenges, for now Manisha is grateful that it provides her access to leading research hospitals and treatment programs. The coverage allows her to seek out routine care to help manage her chronic conditions, decreasing the chances that they will become permanently disabling.
Manisha has even had providers joke, after seeing her extensive medical record, that she must love going to see the doctor. “I’ve been labeled a hypochondriac, a doctor shopper, a ‘frequent flyer,’ a drug seeker. Why would anyone want to do this?” Manisha wonders. “I don’t understand why they’d think a person would enjoy going over and over to the doctor, begging for help.”
THE CONSEQUENCES OF DISBELIEF
Not being believed affects how Manisha sees herself and her pain.
“Once providers gaslight you into believing that there’s no physiological explanation for your pain, or your pain is all in your head, then you start to believe that as well,” Manisha says. “I started to question my own judgment and ignore potentially dangerous symptoms because I was convinced they weren’t real.”
When women and BIPOC aren’t believed about their pain and aren’t offered help, it’s easy to become desperate—and that can be dangerous, Manisha says: “The more we feel stigmatized, scrutinized, and invalidated about our painful conditions, the less we will be motivated to seek help from our providers, and the more we are at risk for resorting to unsafe and harmful methods for managing our pain.”
Recent tests, which Manisha has had to push for, have suggested an autoimmune cause of her painful small-fiber neuropathy. She doesn’t have all the answers yet, but she’s found hope in the potential of new therapies, as well as in providers who trust her judgment and are willing to help her find ways to improve her day-to-day function while they continue to search for a comprehensive diagnosis and treatment plan.
Manisha has also found the validation, motivation, and courage to continue with her pursuits by hearing the stories of other young women and BIPOC chronic pain patients who are facing similar challenges. She says it can be particularly difficult for women of color to learn how to advocate for themselves.
“We tend to blame ourselves for our struggles, and don’t believe that we deserve access to better treatment,” she says.
To other women of color, she shares, “You’re not alone. You’re not the problem, or the one who is broken—it’s the system. Trust in the validity of your experience. It’s OK to be ‘difficult’ and to speak up if your concerns aren’t being taken seriously. Many women and BIPOC are starting to voice similar frustrations about their experiences—and these conversations are helping to push the envelope on addressing systemic bias and barriers in our health care system.”