Part 1: Persistent Spinal Pain Syndrome: A Nurse’s Experience Navigating Chronic Pain and Healthcare Inequities

A personal perspective on chronic pain, neurodiversity, and navigating healthcare as both provider and patient

Why I’m Revisiting This Story

April is recognized as Neurodiversity Awareness Month, and for me, that reflection is not theoretical—it’s lived.

Before I was a coach…Before I fully stepped into health equity work…

I was a nurse who understood the system from the inside.

What I did not yet understand was what it meant to experience that same system as a patient—and more specifically, as a neurodivergent patient navigating pain, identity, and care.

These pieces were originally published on Medium, but I’m revisiting them here because they represent something foundational:

The lived experiences that shaped how I now approach coaching, resilience, and health equity.

Over the past several years, I have found myself more often on the patient side of healthcare than I ever expected.

And that shift has changed me.

It has deepened my empathy. It has challenged my assumptions.And it has made me a more intentional listener—in both clinical and coaching spaces.

I can say honestly:

I did not carry this level of humility when I was a young bedside nurse.

And that realization matters.

Because how we experience healthcare—as providers, as patients, and across identities—shapes how we lead, advocate, and care for others.

Best Laid Plans

In 2019, I underwent a complex anterior/posterior spinal fusion from my pelvis to my ribcage to address severe scoliosis and trauma from a motor vehicle accident. The goal was clear: reduce my pain and restore my quality of life.

Image of the author post surgery illustrating the extent of the spinal procedure

Yet here I am, years later, still navigating the murky waters of persistent post-surgical pain, becoming all too familiar with what medical literature clinically labels as “Failed Back Surgery Syndrome.”

As a nurse, a coach, and a health equity advocate, I once viewed healthcare through a critical and professional lens.

Experiencing it as a patient—repeatedly—has transformed that understanding into something far more personal.

This experience has required me to hold multiple identities at once:provider, advocate, patient, and neurodivergent individual.

And in doing so, I’ve had to confront something I now bring into my coaching work:

We often believe we understand healthcare—until we are required to navigate it ourselves.

Failed Back Surgery Syndrome: The New Terminology of Persistent Spinal Pain

Let me start by saying: I’m not alone. Between 5% to 27.6% of patients experience chronic pain after spinal surgery, with a pooled prevalence of about 15%. That means one in seven people who undergo spine surgery walk away with persistent pain rather than the relief they sought.

For decades, we’ve called this condition “Failed Back Surgery Syndrome” or FBSS. But there’s a problem with this terminology that goes beyond mere semantics. The word “failed” placed a burden on me and my healthcare team that neither I nor they deserved to carry. It suggested something went wrong technically, when often that’s not the case at all.

Reflecting on this label, I strongly advocate for the newer terminology that better reflects the complex nature of this condition without the stigma. The latest International Classification of Diseases (ICD-11) now categorizes this condition as “chronic pain after spine surgery,” placing it within the broader context of chronic postsurgical pain.

Recently, experts have introduced the term “Persistent Spinal Pain Syndrome” (PSPS), which I believe is a significant advancement in understanding chronic pain. This terminology emphasizes that the issue is not solely the fault of either the healthcare provider or the patient. Instead of viewing outcomes through a simplistic “success/failure” lens, it recognizes that persistent pain following surgery is a complex, multifaceted syndrome that requires comprehensive care and attention, rather than dismissal.

My personal journey reflects the importance of this new classification. I began advocating for myself and urging my doctors to consider whether my condition could be categorized as Failed Back Surgery Syndrome. After numerous appointments, one of my doctors, albeit reluctantly, acknowledged my condition by using the term “spinal pain syndrome.” This small moment of recognition was validating and transformative, as it provided me with a sense of understanding and support that I had not received in previous interactions.

Why My Pain Went Unrecognized: The Intersection of Race, Gender, and Neurodiversity

After my fusion surgery, I quickly discovered how ill-equipped many healthcare providers were to address persistent pain effectively. But my experience wasn’t shaped solely by the complexities of persistent post-surgical pain—it was profoundly influenced by who I am: a Black woman with autism who is also navigating menopause.

The Weight of Multiple Marginalized Identities

Research consistently confirms what I’ve experienced throughout my healthcare journey: Black patients, particularly Black women, face significant disparities in pain assessment and treatment. A study published in the Journal of the National Medical Association found that physicians are twice as likely to underestimate pain in Black patients compared with all other ethnicities combined.

More disturbingly, research from 2016 revealed that among medical students and residents, about 12% believed Black people’s nerve endings were less sensitive than those of White people, and about 58% thought Black people’s skin was thicker than Whites’.

These biases translate directly into treatment disparities:

• A recent analysis of medical interactions found that racial and ethnic minorities had significantly lower odds of being prescribed opioids for their pain, even when reporting severe symptoms

• Black patients were 74% more likely to receive inadequate pain treatment after surgery

• Black patients were 29% less likely to receive comprehensive multimodal pain management

As a menopausal woman, I face additional challenges. The medical establishment has historically minimized women’s pain, often attributing it to psychological rather than physiological causes. When these gender biases intersect with racial biases, the barriers to appropriate care multiply.

The Complexity of Autism and “High Masking”

My autism adds yet another layer of complexity to my healthcare interactions. I am what is often called a “high masker”—I’ve developed sophisticated strategies to present myself in ways that appear more neurotypical or “normal” to healthcare providers. This masking is a survival mechanism many autistic individuals develop to navigate a world not designed for our neurotype.

In medical settings, I find myself adopting a specific persona: “Not to bother you, I am one of you, please take me seriously.”

As a healthcare professional myself, I slip into clinical language, minimize my own suffering, and maintain a composed demeanor even when in significant pain—behaviors that often lead providers to underestimate the severity of my condition.

Research on autism and pain management is still emerging, but studies suggest that autistic individuals may process and express pain differently than neurotypical people. Some evidence indicates that healthcare providers may misinterpret autistic patients’ atypical pain expressions, leading to inadequate treatment. For those of us who mask effectively, the problem can be even more pronounced—our carefully constructed “normal” presentations may hide our true level of suffering.

The Fragmentation of Medical Care

My journey took me from my spine surgeon to pain management specialists to physical therapists, each with their own perspective but few with a comprehensive understanding of my condition. Spine surgeons are experts in correcting structural problems but may have limited training in chronic pain management. Pain specialists might not fully understand the biomechanical aspects of spine surgery. This fragmentation of care left me falling through the cracks.

The Psychological Dismissal

As my pain continued despite “successful” surgery, I began to notice subtle shifts in how healthcare providers approached me. Suggestions that my pain might be “catastrophizing” or that I needed to “accept my new normal” became more frequent.

While psychological factors certainly influence pain perception, this labeling often served to dismiss my legitimate physical suffering.

As someone who advocates for a trauma-informed approach to healthcare, I find this particularly concerning. When we dismiss patients’ pain experiences, we risk retraumatizing them and further entrenching their suffering.

The Pain Management Industry: Capitalism’s Impact on Chronic Back Pain Treatment

What became increasingly clear through my journey was how pain management has evolved into an enormously profitable industry. According to a report by the Institute of Medicine, chronic pain affects approximately 100 million American adults and costs the nation between $560-635 billion annually in direct medical treatment costs and lost productivity.

This creates a market ripe for exploitation. Consider these statistics:

• The global pain management drugs market was valued at $71.4 billion in 2020 and is projected to reach $91.6 billion by 2027

• The spinal cord stimulation market alone is expected to reach $2.8 billion by 2028

• Americans spend an estimated $30 billion annually on alternative treatments for pain

What’s particularly troubling is how this system disadvantages those already struggling financially. A 2019 study published in Pain found that individuals with lower socioeconomic status not only experience higher rates of chronic pain but also have less access to comprehensive pain management services.

My own insurance covered my surgery and some initial physical therapy, but as my pain persisted, I discovered that many of the most promising treatments were partially or completely uncovered. From specialized physical therapy approaches to integrative pain management programs, I found myself paying thousands out-of-pocket, a privilege many don’t have.

Comparing Treatment Costs for Persistent Spinal Pain Syndrome

Treatment	Approximate Cost	Typically Covered by Insurance?
Spinal Fusion Surgery	$80,000-$150,000	Yes (with pre-approval)
Basic Physical Therapy	$1,000-$3,000 (10 sessions)	Partially (limited sessions)
Specialized Physical Therapy	$2,000-$5,000 (10 sessions)	Rarely fully covered
Massage Therapy	$6,000+ annually (weekly)	Rarely covered
Private Pilates Sessions	$7,200 annually ($600/month)	Not covered
Aquatic Therapy	$1,200-$2,400 (12-week program)	Sometimes partially covered
Mental Health Services	$3,000-$7,800 annually	Limited coverage with high barriers
Heating Pads/Support Belts	$100-$500	Rarely covered
Alternative Pain Clinic Packages	$3,000-$10,000	Not covered

The Wild West of Alternative Pain Clinics

As my frustration with conventional medicine grew, I began exploring the burgeoning world of private “holistic” pain management clinics. These facilities—often sleek, modern, and targeting middle to upper-class patients—offer a dizzying array of alternative therapies:

• Red light therapy promising cellular regeneration

• Infrared sauna treatments for inflammation reduction

• Laser therapy claiming to heal damaged tissues

• Specialized injections not covered by insurance

• Proprietary supplements with miraculous claims

What struck me most was the minimal regulation surrounding these clinics and their claims. Similar to the $43 billion supplement industry, which operates with limited FDA oversight, these clinics can make sweeping promises with minimal scientific backing.

One clinic I visited charged $250 for an initial consultation and recommended a $6,000 treatment package that combined various modalities—none covered by insurance. They showcased testimonials from patients claiming complete pain resolution, but when I asked for published clinical trials or success rates, I received vague responses about “proprietary methods” and “individualized care.”

This phenomenon represents what I call “hopeful exploitation”—capitalizing on the desperation of people in pain who have been failed by conventional medicine and will try anything for relief. A 2020 survey by the American Chronic Pain Association found that chronic pain patients spend an average of $8,300 annually on out-of-pocket pain-related expenses, with over 70% reporting significant financial hardship as a result.

Part 1 Conclusion: The System That Fails Pain Patients

As we’ve explored in this first part of my story, persistent pain after spine surgery represents a complex intersection of medical, social, economic, and personal factors. The terminology we use matters—moving from “Failed Back Surgery Syndrome” to “Persistent Spinal Pain Syndrome” reflects a deeper understanding of this condition as more than just a technical failure.

The challenges I’ve faced as a Black woman with autism navigating this system highlight how our identities profoundly shape our healthcare experiences. Meanwhile, the capitalist underpinnings of our healthcare system have created a pain management industry that often prioritizes profit over patient wellbeing, leaving many to seek unregulated alternatives out of desperation.

In Part 2 of this series, I’ll share the specific therapies and approaches that have actually helped me manage my persistent pain, explore the complex relationship between capitalism, mental health, and pain perception, and offer thoughts on creating a more just approach to pain management.

I’d Love to Hear From You

Have you experienced persistent pain after spine surgery? Do you relate to the challenges of navigating the healthcare system with marginalized identities? What terminology do you prefer when discussing post-surgical pain conditions?

Share your thoughts in the comments below, and look for Part 2 of this series where I’ll dive into, "Persistent Spinal Pain Syndrome Treatment: What Actually Helped After Spinal Fusion Surgery”

About the Author: Tahitia is a health equity diversity and inclusion consultant who advocates for a trauma-informed approach to healthcare. With personal experience in the LGBTQ+ community and professional expertise in health equity, she brings both personal insight and professional knowledge to complex health topics. After undergoing complex spinal fusion surgery in 2019, she has become an advocate for improved approaches to persistent post-surgical pain management.