Ask Rebecca Share-Howard to introduce herself and she’ll start with what her partner says about her: that she’s caring and compassionate, loves details, loves learning, asks way too many questions, is relentless, and doesn’t give up on people. “I think I’m someone who’s always been this way,” she says. “Pain hasn’t changed that. If anything, it’s amplified it.”

Rebecca lives in Los Angeles, where she’s spent nearly her whole life, and where her whole — very small — family still is. A good Saturday, when her body cooperates, starts with coffee and a walk to the farmer’s market, then board games and music on her patio, and no good day is complete without delicious food. About a year ago she got hooked on the New York Times crossword; she can handle the Mondays and Tuesdays on her own, and sometimes does the Saturday puzzles with her mom. She also carries a deep love of the ocean, which started when she spent summer weeks aboard a tall ship at camp as a teenager. She can’t get on a sailboat often these days, but she walks the marina near her home and watches the boats bob up and down. It helps her feel at peace.

On a high-pain day, a good day looks different — it’s found in the moments when her partner or a friend makes her laugh, even about the ridiculousness of the situation, or when a moment of relief arrives and she lets herself bask in it. “I always try to seize those moments,” she says.

A pain without a name

Even as a young child, Rebecca had health problems that didn’t add up to anything her doctors could name. At age ten, things changed drastically. She remembers waiting in the exam room for her first appointment at a pediatric pain clinic — chills, hot flashes, pain throughout her body, unable to sit up. “That’s when it really truly began,” she says. “Looking back, that was only the beginning of my journey, even though I didn’t know it yet.”

More than two decades later, her chronic pain still has no single, clear diagnosis. Other diagnoses have accumulated along the way — some naming pain in other forms, some catch-all diagnoses of exclusion, some conditions medicine has only recently begun to understand. A partial, but not nearly exhaustive list: chronic back pain post multiple spinal surgeries, chronic pelvic pain, hypermobility spectrum disorder (HSD), chronic migraines, mast cell activation syndrome (MCAS), postural orthostatic tachycardia syndrome (POTS), and chronic post traumatic stress disorder (cPTSD). However, the core of Rebecca’s chronic pain and the connection between her many illnesses remains unnamed, and living in that space has shaped her on every level: the struggle within herself to understand what’s malfunctioning in her own body; the difficulty other people have grasping the gravity of an illness they can’t see; and the exhausting requirement to justify her story at nearly every encounter with the medical system.

“A clear diagnosis is a shortcut to belief,” she says. “A clear diagnosis can be a shortcut to treatment.”

What it is not, she insists, is a prerequisite for reality.

“The absence of a clear diagnosis is not the absence of a disease.”

“You seem mad”

At eighteen, Rebecca underwent her first spinal fusion. She’d consulted at least four orthopedic surgeons beforehand, thinking she was being proactive — and not one of them mentioned the risk, well documented and elevated by her history, that the surgery could cause chronic back pain. It did.

In fact, chronic back pain after spinal surgery is so common it has many names: “Failed Back Surgery Syndrome”, “Post-Laminectomy Syndrome”, and, more recently, “Persistent Spinal Pain Syndrome Type 2”.

At a follow-up visit long after her body should have healed, she told her surgeon that she now lived with severe, life-altering back pain every day, above and below the fusion site.

He looked at her and replied: “You seem mad. Spinal fusion does not cause chronic back pain.”

She never went back. She walked out of the office and cried — not because she doubted herself, but because she didn’t. “I needed to be heard. I needed to be acknowledged. I needed to be validated. I needed empathy. And they don’t teach that.”

Years later, the lesson repeated in a new form: a concierge physician who specialized in complex cases signed her on as a patient, then called a day or two later to withdraw. Her case, his office said, was “too complex”. “The story is so absurd, it’s almost funny,” she says. “The system really isn’t built for people like me.”

Putting a name to what she already was

Rebecca once planned to fix that system from inside it. In college at UC Berkeley, she majored in Public Health, minored in Disability Studies, and set out to become a doctor — a medical detective who would build an interdisciplinary practice for the complex cases nobody else wanted. She worked as a patient care coordinator for the chief of clinical gastroenterology at a major Los Angeles hospital. But her body, again and again, told her it wasn’t built for that work, and she had to keep facing that until she could make peace with it.

The dream didn’t die. It changed shape. Everything her journey had taught her — how to push back, how to make her voice heard, how to avoid medical error, how to speak and interpret the language of medicine — was, she realized, the toolkit of an independent patient advocate. “My dream no longer felt like a dream anymore — I could clearly see the path I would take to make it a reality.” Last year she earned her Board Certified Patient Advocate credential. “Becoming board certified, I was just putting a name to something I had already become.”

But the credential itself was a deliberate choice, not a formality. Board certification signifies that an advocate has met — and is committed to maintaining — the profession’s standards of competency and ethics, including continuing education. For Rebecca, it was about trust. “Earning the title of BCPA means that this is a profession and I’m accountable to it,” she says. “I wanted people to know that I’m not just someone with lived experience of chronic illness or a couple years of clinical experience. I’m trained and credentialed to do the job of patient advocacy, and I uphold the standards of the profession.”

How she’s making this a reality

She’s now preparing to launch a professional, independent patient advocacy practice dedicated to the people she understands best: people with chronic pain — undiagnosed, primary, secondary, and every case where those lines blur — the people that repeatedly fall through the cracks.

Rebecca has seen firsthand how care is fragmented between providers that don’t communicate with each other, so crucial things get missed. And then there are the most egregious errors, failures to respond correctly in critical situations, or surgeries that are performed incorrectly, placing your health at risk. “I have lived through all of these experiences. Every one is a hard-learned lesson and something I strive to prevent from occurring again to myself, or to anyone else.”

Rebecca’s own experience gave her what no textbook could ever provide: a deep empathy for the struggles people like her face and the knowledge of the value of belief. When someone says, “no one will really listen to me,” Rebecca doesn’t need convincing, because she has stood there before. “So belief is where I start with every client.” The medical fragmentation Rebecca lived through trained her to be the person who looks at the whole picture, as well as the person who pays attention to all the details.

As an independent patient advocate, Rebecca provides clients with objective guidance, coordinates care, and helps navigate the medical system. “My role is to facilitate, ease, and improve clients’ healthcare journeys based on their specific health situations, their needs, and their goals.” Day to day that might look like communicating with providers, preparing for and attending provider visits, medication reviews, researching alternative or unexplored treatments or diagnoses, connecting clients with support services or resources, and helping with informed, shared decision-making, and client-empowerment, just to name a few examples.

Rebecca’s allegiance runs to one place only. “Nobody else at the table has the allegiance that I have to these people,” she says. “I’m the person that is always in your corner in a system that’s difficult to face alone.”

And because she has been labeled the patient who’s “too complex”, she refuses to let a client’s case get written off that way. “Far too few people are willing to take a crack at the puzzle — I make sure every client always has at least one person who will.”

“I know undiagnosed doesn’t mean untrue, and complex doesn’t mean unsolvable.”

The doors she’s just finding

Rebecca’s advocacy started long before the credential. At nineteen, a year out from her first spinal surgery, she sat at breakfast with a friend’s father, who was weighing deep brain stimulation surgery for Parkinson’s and was afraid. She listened, empathized, and shared her own recovery. He went forward with it — and later told his daughter, “If Rebecca could survive spinal surgery, I knew I could do this.” For several years she visited him monthly at his assisted living facility, until he passed away. “This is when I first realized the profound impact I could have simply by listening, empathizing, showing up, and advocating for someone else.”

Rebecca has big dreams for where that practice goes next.

Beyond care coordination and medical navigation, she wants to build dedicated emotional support services into what she offers — and to pursue formal training and credentialing to do it right. One of the places she wants to start is education on trauma-informed care. “Chronic pain is isolating and comes with so many complex emotions,” she says — grief, anger, fear of the future, the strain on relationships, and the constant balancing act between not pushing too hard and overdoing it and paying for it afterward. “I have a lifetime of experience that has taught me about these emotional struggles and how to be there for someone else who’s also facing them.”

Today she fights for one person at a time, and says she always will. But alongside this, she also wants to begin an advocacy journey that fights for systemic change.

What she’s discovering as she steps into the wider advocacy world is that there’s a second kind of table, and that people with lived experience are being asked to sit at it. Research review panels. Committees where study designs get shaped before a single patient is enrolled. Rooms where healthcare policy and funding decisions get made.

“I want to sit on panels that review research proposals and studies,” she says, “and, as a person with lived experience, ensure that the perspectives of people about whom that research is being done are being heard and taken into account. I want to be present at tables where healthcare policies get written or where funding decisions get made.”

She’s at the beginning of that road, and she’s finding she doesn’t have to walk it alone — there’s a community of PWLE advocates, researchers, and mentors who’ve been building these rooms for years, and they are looking for people exactly like her.

Asked what nobody ever asks her, she names the question herself: what has this journey given her? “It’s so much easier to see what it’s taken away — and yes, it’s taken away plenty. But it’s also given me everything. It shaped me into who I am. It’s fueled my fire to affect change and given me purpose. It’s provided me with a whole community I otherwise never would have found. I wouldn’t have chosen it. I wouldn’t wish it on someone else. But I can’t look back on my journey without acknowledging what it’s given me as well.”

Which is, in the end, the point of this publication.

— Tom