Like millions of women, I live with chronic pain – and I had to learn to defend myself

For over 15 years I struggled to get treatment for several types of chronic pain. This trip taught me what it is like to have my pain dismissed or ignored by the healthcare system and the hard lesson that I have to be my own advocate with my medical team.

Even though I grew up surrounded by healthcare professionals and have a high level of health literacy – something not everyone is blessed with – I still had a difficult and often discouraging with the medical system. My training as a social psychologist with expertise in implicit biases (beliefs about others that people unknowingly hold) allowed me to look at my healthcare experiences with a more critical lens.

Implicit biases often affect the quality of health care women – especially women of color – receive

I believe most physicians intend to provide the same level of care to all of their patients. However, decades of research have shown that implicit or unconscious bias can negatively affect the quality of care that women — and women of color in particular — receive compared to white men. I am passionate about using my scientific expertise and lived patient experiences to help raise awareness of these disparities and improve outcomes for stigmatized populations in healthcare.

Learn more about health disparities

Over the years, I have observed how stereotypes or assumptions based on my age, appearance, or socioeconomic status have influenced the attitudes and behaviors of health care providers (HCPs) toward me. Medical professionals often told me that I was too young to have the illnesses that I, in fact, have. They would tell me to “calm down” – that I was too anxious or imagining the worst when I asked them about my symptoms.

I could pick up on their nonverbal cues that they were impatient or annoyed with me in the exam room – including eye rolling, sighing, and other negative body language. I have found that stigmatizing language in my medical record—questioning my credibility or portraying me as difficult—has interfered with my ability to obtain unbiased assessments and appropriate follow-up care from other clinicians.

Living with chronic pain led me to become a pain equity advocate

My journey to becoming a pain equity advocate began in 2006, when I was 23 and working in India. It was my first time abroad alone. I woke up one day with a dull ache in my lower back and within a week the back pain had turned into pain, weakness and numbness radiating down to my toes. I could no longer stand or walk on my own.

I was experiencing signs of cauda equina syndrome and was rushed to the ER for help. The pain was unbearable. My symptoms got worse very quickly and my doctors were concerned that they would lead to permanent neurological damage if I didn’t have emergency surgery. But because I was so young, we decided the goal would be to get me well enough that I could recuperate back home in the United States.

It took a full year of treatments before I was able to regain a level of independent functioning, but chronic pain has been a part of my life ever since. Finding ways to cope with my conditions was easier when I had a flexible student schedule or was still young enough to have access to health coverage through my parents’ insurance.

After graduating from my PhD and making the transition to the “real world”, my back pain became frequent and severe enough that I had difficulty working full time and performing activities of daily living.

Learn more about chronic pain

For years I was told that the only option available to help me manage my back pain would be complex spinal fusion surgery that would permanently rejoin some of my vertebrae. However, my spine surgeons agreed that having surgery at such a young age would only set me up for a lifetime of complications. They told me that I should rather “learn to live simply” with the pain. Still, I didn’t have many pain treatment options other than stress reduction and weight loss – even when I was at a healthy weight and exercising as much as possible with the amount of pain I felt.

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When I started talking more openly about my pain so doctors would agree to prescribe pain medication or refer me to a pain specialist, several doctors recommended that I seek help from a psychiatrist instead. . I received the most encouragement to stand up for myself from staff and doctors who were also women of color.

My chronic back pain is just one of many painful conditions I have had to learn to live with.

A few years ago, I started experiencing a different kind of pain: full-body neuropathic pain, which includes burning, electric shock, and stabbing sensations. I was first diagnosed with fibromyalgia – a label that can be fraught with stigma and discrimination for women whose symptoms don’t match a textbook explanation. I knew, however, that we had not ruled out all explanations for my symptoms. And after two years of pushing for more tests and referrals, my medical professionals finally agreed that there was evidence that I had immune-mediated small fiber polyneuropathy – a condition for which detection and early treatment is essential.

I was fortunate enough to live in Washington, DC, where I was able to receive expanded Medicaid coverage when I became too disabled to work full time. Being on Medicaid, however, added another layer of bias, as medical professionals questioned my work ethic or suggested I was drug-seeking or exaggerating my pain to get disability benefits so small that I couldn’t even live on it. Like many women, I’ve gotten into the habit of listing my credentials and accomplishments when I meet new medical professionals, in the hope that they’ll take me more seriously.

Standing up for yourself is an important part of living with a chronic illness

My journey has taught me that our healthcare system is not designed for women of color with complex illnesses to be successful – but I have no intention of stopping trying. I learned to accept that I have multiple invisible disabilities and that I have to fight to get the care I deserve.

Every day I live what I have spent years studying and I am driven to use my knowledge to help improve health outcomes for stigmatized and marginalized communities. I know that women of color are more likely to suffer from implicit bias in the healthcare system because there isn’t as much research or understanding about the causes or symptoms of chronic disease in our communities.

I hope sharing stories like mine can increase awareness of the prevalence of autoimmune and neurological diseases among young women and people of color in general, and improve access to testing and treatment. at earlier stages, before the diseases become permanently disabling.

Finally, I hope that by sharing my story, I can help other women of color living with chronic pain feel validated in their experiences, as well as encourage more healthcare professionals to engage in open dialogue with their patients on overcoming stigma and barriers in pain care.