My name is Paula, and I live in Colorado. Three years ago, after a long and painful journey, doctors finally diagnosed me with multiple myeloma—a blood cancer that affects the plasma cells in the bone marrow. What should have been caught much earlier became a harrowing three-year ordeal of dismissed symptoms, shame from my doctor, and barriers that blocked the care I desperately needed.

Today, as a survivor, I’m sharing my story to shine a light on those barriers and issue a clear call to action. Lawmakers, healthcare providers, insurers, and advisory boards at both state and federal levels must prioritize timely access to screenings and specialists. Essential tests need to be affordable, and patient concerns must be met with real transparency—because lives depend on it.

For three long years, unexplained pain and crushing fatigue consumed my life. I brought these symptoms to my primary care physician again and again. Instead of listening, he made assumptions about my lifestyle. He blamed my weight and insisted that better eating and more exercise would fix everything. Those appointments often left me in tears as he told me my problems stemmed from a “lack of control.” His dismissive attitude wasn’t just frustrating—it was harmful.

I grew up respecting doctors and trusting their expertise, so even when something deep inside told me this was far more serious, I kept returning. With no affordable alternatives, I felt I had no choice.

I begged for referrals to specialists—an ENT or a neurologist—but he refused every time. Then, antibiotics prescribed for what he called a sinus infection triggered a severe anaphylactic reaction. Recovery took nine months, yet the pain and fatigue never went away.

My breakthrough finally came when my regular doctor was on vacation. The on-call physician actually listened. She was kind and attentive, and she immediately referred me to a neurologist. I scheduled the appointment quickly, afraid my primary doctor might cancel it once he returned. All I wanted were answers: Why was the pain constant? What was stealing my energy?

The neurologist was gruff and no-nonsense. He challenged my descriptions and tried to steer the conversation, but he kept asking questions. He started with my pain, then dug deeper. After a month, he ordered a simple blood draw. The results revealed an abnormal marker. A second test confirmed it: I had multiple myeloma.

That straightforward blood test changed everything.

The Power of Early Diagnosis

Catching multiple myeloma early brings real relief, understanding, and far better outcomes. It means less pain, reduced bone damage, and protection against serious kidney complications caused by abnormal proteins. Kidney issues are a major challenge with this disease and often lead to dialysis and a sharply diminished quality of life. When found early, we can avoid many of these devastating setbacks, preserve organ function, and gain precious time with the people we love.

According to the American Cancer Society, the five-year relative survival rate for multiple myeloma is now about 62%. Early detection plays a critical role in improving those odds and preventing years of unnecessary suffering and irreversible damage. Yet barriers like denied referrals and unaffordable screenings keep too many people from that life-changing early diagnosis.

A Call to Action for Change

To members of Congress, state legislators, doctors, insurance leaders, and advisory board members: please hear our voices. When access is denied and patient concerns are ignored, the consequences are devastating—prolonged suffering, permanent damage, and lost lives.

We need reforms that put patients and their doctors back in control. We need a bipartisan commitment to a healthcare system that works for all Americans: timely access to screenings and specialists without unnecessary gatekeeping, affordable testing so cost never forces anyone to delay care, and real transparency from insurers and review boards when referrals or treatments are denied or delayed.

My motivation comes from everyone who has lost their battle with multiple myeloma, from those still fighting, and from those who have yet to be diagnosed. I draw inspiration from the selfless caregivers who sacrifice so much and from the dedicated medical professionals who truly listen and care.

We can no longer rely on chance encounters with compassionate doctors. Systemic change is essential—and it starts with all of us raising our voices together.

Thank you for listening to my story. Together, we can make early diagnosis the rule, not the exception.

Editor’s Note:
Patients Rising shares patient stories to raise awareness and reduce isolation among patients and caregivers navigating serious health conditions. Stories are submitted by patients and may be edited for clarity and flow while preserving the author’s voice. The experiences described are personal accounts and should not be considered medical advice.

In Their Own Words

Hear Paula share her story in her own voice. From years of being dismissed to the moment a simple test changed everything.

Read the Full Transcript

This is a full transcript of Paula’s story from the In Their Own Words video. It has been lightly edited for clarity and readability.

Introduction

I went to my primary care doctor for three years with the same symptoms—pain and fatigue. Terrible fatigue. My primary care talked to me about eating and exercising as a way to solve my pain. He was making a good deal of assumptions about my lifestyle, and many times he shamed me.

I knew there was something wrong with me, but I could not put my finger on it, and I knew my primary care was not listening to me. He kept blaming me. He even made me cry. He suggested that everything I was experiencing was due to a lack of control over my weight. If I would just stop eating, it would all get better.

I asked several times to be referred to an ENT or a neurologist.

Dismissed & Ignored

My primary care doctor refused to refer me to any other doctors. At one point, my pain was diagnosed as a sinus infection and antibiotics were prescribed. I had an anaphylactic reaction to the antibiotics. It took nine months to recover from this process, which was a sign of a greater issue.

I still had pain and fatigue, so I contacted my primary care again and asked if I could see someone else. When I called, my doctor was on vacation. The on-call doctor who was covering his patients was incredibly kind and listened to me.

A Doctor Who Listened

On that call, the doctor referred me to a neurologist immediately.

All I wanted to know was why I was having so much pain and why I had such a dramatic shift in energy.

I went to see the neurologist. He was gruff. He kept telling me what I was presenting didn’t make sense, saying, “No, that can’t happen.” But he kept asking questions—and he kept listening.

He addressed my pain and continued to dig deeper.

The Diagnosis

He ordered blood work. Within two days, he called me back for another test after noticing something abnormal.

A simple blood test changed everything.

That test confirmed I had multiple myeloma.

Why Early Diagnosis Matters

Early diagnosis means more time to understand your disease and what you need to do to treat it. It means less pain. It can mean less bone damage and better outcomes.

Knowing you have multiple myeloma early can help prevent kidney damage and avoid dialysis.

Thank you for listening to me. Thank you for giving me a voice.

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