Author: Jeff Forslund

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Acute Myeloid Leukemia (AML) Biomarkers Patient Events

AML Biomarkers

AML biomarkers

AML Biomarkers: How Testing Shapes Your Treatment Options

Webinar on Wednesday, June 18th | 3pm PDT / 6pm EDT

Hear a Patient-Physician Perspective – Follow Joseph’s journey and learn how a doctor makes decisions when he’s the patient.

 

Join AML expert Dr. Stephen Strickland from Sarah Cannon Research Institute, AML patient and doctor Joseph, and advocate Steve Buechler to learn how biomarker testing can unlock better options. Learn how understanding what mutation you have, like NPM1, IDH, KMT2A, and RUNX1 can shape treatment choices—and how patients can work with their doctors to explore every option, including clinical trials.

Key Topics:
  • Understand AML Biomarkers – Learn how FLT3, NPM1, IDH1/2, and KMT2A mutations impact risk and treatment choices
  • Test Early, Treat Smarter – See how early biomarker testing shapes decisions from day one
  • Explore Targeted Treatment Options – Understand how biomarker-driven therapies are changing care
  • Navigate Clinical Trials with Confidence – Learn how to evaluate opportunities and what trial participation really looks like
  • Partner with Your Care Team – Get tips to advocate for testing and align on a personalized treatment path
AML biomarkers Program Panel
The Leukemia & Lymphoma Society is here for you with information about clinical trials, resources, and support.

We would like to thank The Leukemia & Lymphoma Society for their partnership.

The LLS offers free resources like its Information Specialists, who are one free call away for support in different areas of blood cancer. 

Register now then invite a Friend or Care Partner – This information is valuable for anyone facing AML.
AML Biomarkers: How Testing Shapes Your Treatment Options
Hosted by The Patient Story
Learn how understanding what mutation you have, like NPM1, IDH, KMT2A, and RUNX1 can shape treatment choices—and how patients can work with their doctors to explore every option, including clinical trials.
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Continuing the Dream Diversity, Equity, & Inclusion

Pamela Price: Saving Lives by Eliminating Healthcare Disparities

Pamela Price feature profile

Pamela Price: Saving Lives Through Awareness and Action

Pamela Price, Deputy Director of The Balm in Gilead, an organization focused on eliminating healthcare disparities, says she felt fine before she was hit by the news that flipped her world upside down. She was diagnosed with cervical cancer. It’s also not the first time Pamela has had to deal with cancer. She lost her mom and both grandmothers to cancer and has been a care partner to her husband, who’s living with a chronic blood cancer.

Interviewed by: Stephanie Chuang
Edited by: Katrina Villareal

Pamela Price feature profile

Pamela says it was her and her husband’s doctors who truly advocated for them, changing the trajectory of their care and their lives. Now she works every day to help save other lives through awareness and action. Her mission is to bring the conversation of healthcare and awareness to faith communities across the country.

Multiple myeloma disproportionately impacts Black Americans — 1 in every 5 people diagnosed is Black or African American. That’s why Pamela spent nearly two years working with fellow patients and advocates to identify the top ways to help cut through healthcare disparities for multiple myeloma patients. Pamela and her group were selected to present their findings at the largest gathering of top doctors and researchers in blood disorders and cancers called American Society of Hematology (ASH).

Watch this last episode of our series of three to hear about their top solutions for reducing healthcare disparities and serving as many people as possible who are dealing with the hardships of a cancer diagnosis.

Pfizer

Thank you to Pfizer for supporting our patient education program. The Patient Story retains full editorial control over all content.

This interview has been edited for clarity. This is not medical advice. Please consult with your healthcare provider to make treatment decisions.

Table of Contents
  1. Introduction
  2. How Cancer Has Impacted My Life
  3. Experiencing Personal Loss from Cancer
  4. Importance of Paying Attention to Our Health
  5. Importance of a Patient’s Lived Experience
  6. Multiple Myeloma Disproportionately Impacts Black and African Americans
  7. Reimagining Access to Healthcare & Information
  8. Importance of Talking About Our Health

It was an amazing primary care physician who wasn’t his regular primary care provider who saw something off in his labs…

To us, she saved his life.

Introduction

I’m the Deputy Director of The Balm in Gilead, where public health and faith intersect.

I’m very extroverted and my husband’s very introverted. He served for over 22 years in the US Army. It was an amazing primary care physician who wasn’t his regular primary care provider who saw something off in his labs. She said, “Hey, you’re young and in shape. I doubt it’s anything, but I’m going to order some additional tests anyway.” To us, she saved his life.

He’s an awesome father. We have twins and an older one who will be graduating from college soon. Outside of the father and the husband that he is, which is why I could be here sharing his story, I’ve never met someone as disciplined, mentally strong, and resilient as he is. I see the physical toll that this takes on him, from the fatigue to the lethargy and the headaches, and I see him every day push through and show up for me and our kids.

Pamela Price
Pamela Price

He plans 10,000 things when we go on vacation every year, even though we know that 9 times out of 10, one of those days is going to be a day when he’s not going to physically be able to do it. Those are the things that I love about him so much because it’s a constant reminder of what this journey can be like for a person like him living with it but also for me as a spouse and care partner.

We both were in the military. He served much longer than I did. We met as a group of friends. It was interesting because when I first met him, I thought he was an attractive guy who knew he was attractive and was expecting a certain thing from the ladies, and I was not going to do that. I’m not that girl.

Lo and behold, our paths would cross again. He ran into a good friend of mine who mentioned that we were going to be back at the same duty station. He asked for my number and we connected. We talked on the phone probably daily for months because he was in another duty station until he had a permanent change of station. After about six months, we decided to move in and then six months later, we got engaged before his last deployment to Iraq. We got married once he came back.

I lost my mother unexpectedly in January 2018. I had my bout with cervical cancer the same time…

Then we get my husband’s diagnosis. This was all within January to July 2018.

How Cancer Has Impacted My Life

Cancer has impacted me in different ways. I lost my maternal and paternal grandmothers to breast cancer. My amazing husband was diagnosed with polycythemia vera, but he progressed even after treatment. We have been on his cancer journey since 2018, which was also the year I lost my mom, so that was a very trying year.

He’s a big part of my why. I try to carry the stories of my family, my background, and people from communities where I come from with me.

Pamela Price

The first thing was that we realized that life is fragile.

Experiencing Personal Loss from Cancer

Pamela Price

I lost my mother unexpectedly in January 2018. I had my bout with cervical cancer the same time. I had surgery and I was going through radiation, so we were of the mindset that I was going to be fine. Then we get my husband’s diagnosis. This was all within January to July 2018. At that time, our twins were still young. They were about to turn five.

Initially, I thought about the things that we wouldn’t be able to do. I had done the research and realized that we may not have as many years with each other as we had planned. Our initial conversation was about how to master the now. How do we live in a way that will still allow us to do the things that we had planned to do for however long we have? Then we had to sit down and explain to our oldest at the time. We had to wait a couple of years before we explained to the twins and that was difficult, as well.

The first thing was that we realized that life is fragile. We’re not going to have all the time. What do we do? What we came up with was that we were going to maximize every minute. We already had our wills. It’s the day to day. What are we going to do on this anniversary? What are we going to do this weekend? I usually would let it slide that we didn’t have our date night last month or the month before or the month before, because I was somewhere working, but now, how do we reprioritize that?

A small silver lining of his diagnosis is that it allowed us to refocus.

Between losing my mom, having my cancer diagnosis, and now having my husband be on this journey, it helped us focus and prioritize time, how we were going to spend it, and where we were going to channel our energy and focus. A small silver lining of his diagnosis is that it allowed us to refocus that without the diagnosis, we would not have done.

I had no symptoms, which was the crazy part. I went in for a wellness exam and a Pap smear, like I normally would. Then I got a letter that said I had to come in for follow-up testing. When I found out I had cervical cancer, I told my husband, “My reproductive system is literally trying to kill me.” I’ve lived with endometriosis my whole life.

I went to the doctor to find out the course of action, but I wanted to make sure it’s not keeping what I have. We have children, so I don’t need it anymore. I was able to work with my clinician and my oncologist to get a good form of care. Luckily, we caught it early. I had to have some radiation because of the issues with the endometriosis and I had cervical tissue in places it shouldn’t have been, but I was able to come through it well. I lost my hair, but it worked out well.

Pamela Price
Pamela Price

I had no symptoms whatsoever and I almost canceled that appointment because I had lost my mom. I said I’ll reschedule. Something in me said, “You already have a schedule. You know that with the VA, it’s hard to get an appointment. Keep the appointment.”

Luckily, I kept it and I got referred to a good OB-GYN and a good oncologist. We found a plan that worked for me. They didn’t try to convince me to keep things. I told them they could take it all. I welcomed menopause early. At this point, I didn’t want to risk that something else along this reproductive track would decide it doesn’t like me anymore. We’ve been on this with my husband since that same year. 2018 was a doozy.

You will always be your best advocate because you’re the one who knows your body the best.

Importance of Paying Attention to Our Health

One of the first things that I tell them is not to rely on the information given to them. A lot of times, you have to research and find that information yourself.

You will always be your best advocate because you’re the one who knows your body the best. You may pick up on telltale things that externally aren’t revealed. Maybe they won’t even show up on a lab, like they did with my husband.

Recognize that when you walk into a provider’s office, you have the most important voice in that appointment. I know we don’t always see it that way. We trust and rely on our providers and we do need them, but we also should make sure to keep that power dynamic equitable. Don’t relinquish your voice. Those are the key things that I constantly tell my family, friends, and the people I meet through the work that I do. I tell my daughter now that she’s having her doctor’s appointments without me.

Pamela Price
Pamela Price

Importance of a Patient’s Lived Experience

This research was patient-focused. I know we use that term a lot, but this was one of the rare opportunities that I’ve been able to participate in a committee where nothing was decided without the patient. Even in this abstract, our lead author is a patient, so it amplified the power of the lived experience of the patient.

There’s no amount of education that we can have academically or even in work that I do as an advocate that can rise to the level that lived experience provides. This project centered on that and we could see the fruit of what something could look like in a scientific conference like ASH that is, the patient on a poster in a paper. It’s useful not just for patients. This is something providers, clinicians, and other community organizations can use.

There’s no amount of education that we can have academically or even in work that I do as an advocate that can rise to the level that lived experience provides.

Multiple Myeloma Disproportionately Impacts Black and African Americans

The biggest problem was cost. That’s something that, even we as a group, we’re not necessarily equipped with to deal with insurers and payers. Eventually, the right stakeholders will have to get together to figure out how to address that because that’s a significant issue.

Another one is access. Even if we can educate the community about what multiple myeloma is, what MGUS (monoclonal gammopathy of undetermined significance) is, and all these other things, it’s all for naught if we don’t have access. By access, I mean rethinking and reimagining where healthcare is delivered, how healthcare is delivered, and making sure that access is no longer a barrier like it is today.

Pamela Price
Pamela Price

Reimagining Access to Healthcare & Information

The healthcare system, as it stands today, is very transactional. For better or for worse, that’s the system that we currently have. By reimagining it, how can we put something, let’s say, in a church that’s a trusted place?

Within the landscape of multiple myeloma, clinical trials are key and pivotal. We have so many new therapies coming to market, but we don’t have the representation that we need. Can we invest something in a church that has a community center and come out to them on a Saturday, like we typically do at The Balm in Gilead, and do some type of awareness event with them?

Even if we can educate the community about what multiple myeloma is… it’s all for naught if we don’t have access.

Then take it a step further. How can I work and train a couple of people in the church on the basics of a clinical trial or what cell therapy looks like for a multiple myeloma patient? How can I work with the church to establish a multiple myeloma peer support group?

For the African American community, our church has historically been our anchor. From the time we arrived on this continent, our faith has been an anchor for us and it drives our behavior. One of the biggest scriptures we use in our work is that faith without works is dead. We don’t ask people to abdicate their faith, whatever form it comes in. We don’t ask you to abdicate praying, but we do ask you to pair that with action. Make yourself a more informed individual, make your communities more informed, and break down some of the traditional silos of how and where we think this type of information and engagement can take place.

Pamela Price
Pamela Price

Importance of Talking About Our Health

Something that I’ve said to churches, faith leaders, and pastors is that we know and we teach in terms of the God that we serve that we are nothing but spiritual beings having this earthly encounter. But along this earthly encounter, it is this fleshly body that we must have this encounter through, so we have to make sure that we’re doing our part, whether it’s prevention or treatment.

God will do His part and do His work, but we have to make sure that we identify our work to make sure that we’re doing what we can to protect this vessel that we’ve been given, so that we’re not sending souls to see our Maker prematurely.

Sadly, we see it play out and that’s in the disproportionate rate of deaths. It’s in the disproportionate rates of individuals being diagnosed too late or inaccurately. How are we going to shift that paradigm? We know the social determinants of health, and that’s been something that’s been coined and raised for decades, but still, here we are and African Americans are bearing the burden for multiple diseases and conditions.

African Americans are bearing the burden for multiple diseases and conditions.

Can we afford as a community, as a people, and even collectively as a country, to not pause and take the time to get it right? Look at some of the solutions that this committee, led by patients and take some of those things to heart. Make the tough decisions. Be first, be bold, be innovative, be forward-thinking, and get outside of the box to not do something just because that’s the way we’ve always done it. The risk is that we will continue to lose lives that we don’t have to lose.

I know it seems ridiculous, but go get your wellness exams. We let so many things pass and get worse, and then we decide to go and it’s through the route of an emergency room. I know many of us have heard of someone who goes into the ER, then the next thing you know, they’ve got a triple bypass and it’s because of high blood pressure that has been running rampant for who knows how long.

How do we start to nurture this next generation to be able to not only move forward with the advocacy but move forward with the innovation that we’ve heard and learned about at ASH? That would be my thing. My passion is young people because they are going to be the future. I figured that if we can take care of you better, you will take care of us.

Pamela Price
Pfizer

Special thanks again to Pfizer for supporting our patient education program. The Patient Story retains full editorial control over all content.

Hip-Hop, Hope, and Health: Oya Gilbert’s Multiple Myeloma Story

Oya Gilbert

Oya Gilbert had always been full of energy. A father, a hip-hop lover, and a man who rarely got sick. But in 2015, his body started sending him signals he couldn’t ignore. But for two years, doctors dismissed his symptoms as anxiety. Watch Oya’s story from misdiagnosis to myeloma advocacy.

Dr. Brandon Blue on Improving Myeloma Care for Black Patients

Dr. Brandon Blue

Brandon Blue knew at a young age that he wanted to help people. Decades later, he’s done that and so much more, changing and saving the lives of people who’ve been diagnosed with cancer.

Learn key tips on how people can make a difference for themselves and their health, and what can help save lives.

First-Line Treatment Stories


Michelle C., Multiple Myeloma



Symptoms: Back pain, sinus infections, painful and itchy scabs, stomach pains, weight loss

Treatments: First-line treatment, stem cell therapy
Melissa

Melissa V., Multiple Myeloma, Stage 3



Symptom: Frequent infections

Treatments: IVF treatment & chemotherapy (RVD) for 7 rounds
Jude

Jude A., Multiple Myeloma, Stage 3



Symptoms: Pain in back, hips and ribs; difficulty walking

Treatments: Bilateral femoral osteotomy, reversal due to infection; chemotherapy

Relapsed/Refractory Treatment

Michele J. multiple myeloma

Michele J., Relapsed/Refractory Multiple Myeloma



Symptoms: Fatigue, anemia, persistent lower back pain, sharp leg pain during movement

Treatments: Surgery, chemotherapy, stem cell transplant
Theresa T. feature profile

Theresa T., Relapsed/Refractory Multiple Myeloma, IgG kappa Light Chain



Symptom: Extreme pain in right hip

Treatments: Chemotherapy, CAR T-cell therapy, stem cell transplant, radiation
Laura E. feature profile

Laura E., Multiple Myeloma, IgG kappa



Symptom: Increasing back pain
Treatments: Chemotherapy, stem cell transplant, bispecific antibodies

Donna K., Refractory Multiple Myeloma



Symptom: None; found through blood tests
Treatments: Total Therapy Four, carfilzomib + pomalidomide, daratumumab + lenalidomide, CAR T-cell therapy, selinexor-carfilzomib

Connie H., Relapsed/Refractory Multiple Myeloma



Symptom: Chronic bone pain
Treatments: Chemotherapy, CAR T-cell therapy

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Blood Tests Diagnosis FAQ Medical Tests Patient Events

Understanding Cancer Blood Tests

Dr. Kamran Mirza Discussion on Blood Works for Cancer Treatment

Blood Work Basics: Making Sense of Your Test Results

Watch ON DEMAND

What does your cancer blood test results really mean — and how do they help doctors detect or monitor cancer?

 

Listen in as hematopathologist Dr. Kamran Mirza and cancer advocate Stephanie Chuang to break down the most common diagnostic cancer blood tests, including the CBC. Learn how pathologists interpret results, what those ranges mean, and how small changes in your numbers can offer big insights into your health. 

Key Topics:
  • Why doctors order cancer blood tests: What they’re looking for and how to prepare.
  • Making sense of the CBC: Understand what each number represents — and what it doesn’t.
  • How blood results guide treatment: From diagnosis to tracking remission or recurrence.
  • Should I be worried?: When out-of-range numbers matter and when they don’t.
  • What’s next in the series: Learn how this session leads into condition-specific follow-ups for 6 different blood cancers.
Understanding cancer blood test results
The Leukemia & Lymphoma Society is here for you with information about clinical trials, resources, and support.

We would like to thank The Leukemia & Lymphoma Society for their partnership.

The LLS offers free resources like its Information Specialists, who are one free call away for support in different areas of blood cancer. 

Register now to get notified about the follow-up program tailored to your cancer type.
Blood Work Basics: Making Sense of Your Test Results
Hosted by The Patient Story
What do your blood test results really mean — and how do they help doctors detect or monitor cancer? Learn about the most common diagnostic tests, including the CBC and the CMP.
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Participate Video Submissions

Who is Your Hero

Who has been a health support Hero to you

Back to our Story Prompts

Tell Us About a Hero in Your Life

Shine a light on someone who’s helped you along the way.

We all have someone who lifted us up when we needed some support.
Maybe it’s a loved one, a nurse, someone you saw online who inspired you, maybe even yourself.

Share who inspired you and why they mattered. Your words could help someone else feel a little less alone.

No script. No pressure. Just you and your story.
  • Answer a few short video prompts
  • Respond by video or text
  • Get featured on our website, YouTube, or social media to reach others who need to hear it.
Why We’re Asking This Question

In healthcare, it’s often the small acts of kindness that leave the biggest marks on our hearts. Whether it’s a doctor who listened a little longer, a nurse who offered comfort in a scary moment, a family member who stood strong beside you, or even a stranger who shared their story, these heroes help shape the experience of healing.

At The Patient Story, we believe every voice matters—and so do the voices that lift us up along the way. In this video request, we are asking you to share who made a difference in your healthcare journey. Your heroes could be anyone: a caregiver, a fellow patient, a community advocate, or even you yourself.

By celebrating these moments of inspiration, we help others see the power of connection, compassion, and encouragement. These videos honor those whose words, actions, or simply their presence made your healthcare experience feel more human.

Your story could inspire someone who is facing a new diagnosis, navigating treatment, or simply needing a reminder that good people exist.

Who made you feel seen, supported, or stronger?
Tell us about them—and help pass that hope forward.

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Participate Video Submissions

Self-care Tips From Patients

Self-care Tips for Patients

Back to our Story Prompts

Self-care Tips From Patients

Me First — And That’s Okay

How do you practice self-care and what has that done for you?
From rest to reflection, movement to mindfulness, or simply saying “no,” we want to hear what self-care looks like for you. Whether you’re a patient, caregiver, or care partner, your experience could inspire someone else to prioritize their own well-being.

You never know who needs permission to put themselves first.

Self-care isn’t selfish — it’s survival.
  • Answer a few short video prompts
  • Respond by video or text
  • Get featured on our website, YouTube, or social media to reach others who need to hear it.
Why We’re Asking This Question

Self-care isn’t selfish—it’s a critical part of surviving and thriving through health challenges. Patients, caregivers, and care partners often give so much of themselves to others that their own needs can easily be overlooked. At The Patient Story, we want to help normalize self-care as a vital, necessary act of strength.

In this video interview, we are asking you to share what self-care looks like in your life. Maybe it’s finding quiet moments to breathe, asking for help when you need it, making time for joyful activities, or setting healthy boundaries. No act of self-care is too small—each step is a powerful commitment to your own well-being.

Your experiences can light the way for others who may feel guilty prioritizing themselves. By speaking openly about self-care, we show that caring for ourselves makes it possible to better care for others, face challenges with more resilience, and stay connected to what makes life meaningful.

We hope these videos inspire people to honor their own needs, to listen to their bodies and minds, and to recognize that putting themselves first sometimes is not only okay—it’s essential.

How do you practice self-care? So when you’re ready, hit record. We’re here. We’re listening.

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Participate Video Submissions

Living with Watch and Wait

Share your cancer story about watch and wait

Back to our Story Prompts

Living in “Watch and Wait”

Tell us about your experience with active surveillance.

Hearing “We’re going to monitor things for now,” can stir up so many emotions. Relief, anxiety, confusion, even frustration. Living with a diagnosis while being told to “watch and wait” is its own kind of journey—one that’s often invisible to others.

We want to hear your story.

No script. No pressure. Just you and your story.
  • Answer a few short video prompts
  • Respond by video or text
  • Get featured on our website, YouTube, or social media to reach others who need to hear it.
Why We’re Asking This Question

For many cancer survivors, the experience of living through watch and wait is one of the most difficult parts of the journey. It’s a time marked by uncertainty, hope, and careful preparation. It’s a phase where strength is built quietly, often without others realizing the mental and emotional work it takes to live each day under the weight of “not yet.”

Survivors who used that time to focus on their health—to strengthen their bodies, prepare mentally, and set themselves up for future treatment—carry a story that deserves to be told. It’s a story of resilience, of making invisible battles visible, and of showing that action comes in many forms, even when it doesn’t look like it from the outside.

After moving through treatment and reaching remission, there’s an even greater calling to share that journey. Telling the full story—from active surveillance to active treatment to life after—can offer real hope to others who are just starting down the same uncertain path. It shows that waiting doesn’t mean giving up, and that survival is shaped not just by medicine, but by mindset, preparation, and perseverance.

Sharing these lived experiences helps others feel less alone, more empowered, and better prepared for whatever lies ahead. Every voice makes a difference. Every story lights the way for someone else.

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Participate Video Submissions

Advocating for Care

How to be your own best advocate

Back to our Story Prompts

How Did You Advocate for the Best Care?

Tell Us About a Time You Spoke Up

Think back to a time when you found yourself advocating—maybe in a doctor’s office, a hospital room, or even in a quiet moment outside of it all. You spoke up for yourself. Or maybe for someone you love.

That moment mattered. Now it can help someone else!

So many patients and care partners struggle to find their voice. By sharing your story, you help others understand that it’s not only okay to speak up—it’s necessary. Your experience can give someone else the words they need.

Answer by Video or Text
  • What was the situation?
  • What gave you the strength to speak up?
  • And why do you believe that kind of self-advocacy matters—for you and for others?
Why Advocacy Stories Matter

When it comes to navigating cancer or any serious illness, self-advocacy can be life-changing. Whether it’s asking a tough question, pushing for a second opinion, requesting a different treatment option, or simply saying, “Something doesn’t feel right,” speaking up can lead to better care and greater peace of mind.

But self-advocacy isn’t always easy—especially in a system that can feel overwhelming or dismissive. That’s why stories like yours are so important. When you share what it was like to advocate for yourself or a loved one, you’re helping others realize they’re not alone in their uncertainty, their courage, or their questions.

Your experience can empower someone to speak up during an oncology appointment, advocate for their mental health, or stand strong in a moment of doubt. It can offer validation, encouragement, and even practical tips for navigating the cancer care system.

At The Patient Story, we believe that every voice matters. By taking a few minutes to share this part of your journey, you’re helping others find theirs. And in doing so, you’re helping shape a healthcare experience that truly listens.

Recent Stories Discussing Self-Advocacy

Elise T. stage 4 pancreatic cancer

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Janelle C. stage 4 adrenal cancer

Janelle’s Stage 4 Adrenal Cancer Story of Connection

Janelle C., Adrenal Cancer (Adrenocortical Carcinoma), Stage 4 Symptoms: Excessive thirst and water intake, interrupted sleep...
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Ryan’s Clinical Trial Experience Facing Stage 4 Tongue Cancer

Ryan A., Tongue Cancer (Squamous Cell Carcinoma of the Head and Neck), Stage 4 Symptom: Lesion...
Emily D. stage 4 stomach cancer

Emily’s Incurable Stage 4 Stomach Cancer

Emily D., Stomach Cancer (Gastric Adenocarcinoma), Stage 4 Symptoms: Persistent postpartum stomachache, early satiety, difficulty swallowing...
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Participate Video Submissions

But You Don’t Look Sick

Tell us about a time when someone said - But you don't look sick.

Back to our Story Prompts

“But you don’t look sick?!”

If you’ve heard those words, you already know.

There’s a sting to the phrase, “But you don’t look sick.” It’s a moment many people living with invisible illness or cancer have faced. And yet, every person’s response tells a different story: strength, pain, humor, resilience, clarity.

Tell us about a time when someone said or did something to make you feel like your pain was invisible.
  • Answer a few short video prompts
  • Respond by video or text
  • Get featured on our website, YouTube, or social media to reach others who need to hear it.
Why We’re Asking This Question

When someone says “But you don’t look sick,” it may sound innocent—but for many people living with cancer or invisible illnesses, it can feel dismissive, even painful. It overlooks the very real symptoms, emotional struggles, and daily decisions that define life with a serious diagnosis.

We believe that when you share these moments—honestly and in your own words—you not only take back the narrative, you help others find the courage to do the same.

This isn’t about having a “perfect” response. It’s about truth. It’s about giving voice to what so many experience in silence.

Maybe you laughed it off when someone said, “But you don’t look sick.” Maybe you stayed quiet. Maybe you finally said what you’d been holding in for months. Whatever your story is, we want to hear it.

Because your story matters. And it will help someone else feel like they matter, too.

So when you’re ready, hit record. We’re here. We’re listening.

Back to our Story Prompts

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Interview Requests Participate

Help Us Better Represent the Black Health Experience.

interview request covering the Black health experience

Do You Want to be Interviewed?

Help Us Better Represent the Black Health Experience.

The Black & African American community has long faced barriers in care—from delayed diagnoses, fewer treatment options, and worse outcomes to limited representation in medical stories and research.

Please fill out the questions below to help us learn more about your experience. While we can’t guarantee every submission will be featured, we review each one with care and will reach out if there’s an opportunity to connect.

We’re hoping to bring change through our stories. And we can’t do it without you.

MLK Quotes

Continuing the Dream is a program created to elevate Black voices in health—patients, survivors, caregivers, and advocates. By sharing your story or completing this short interview request, you’ll help us better understand the real experiences of Black Americans facing health challenges, so we can represent them fully, honestly, and powerfully.

Of all the forms of inequality, injustice in health is the most shocking and inhuman. — Martin Luther King Jr.

Why Your Story Matters

  • Representation saves lives. When people see themselves in others’ stories, they’re more likely to seek care and speak up.
  • Your insight drives change. What you’ve gone through helps highlight gaps and inspire solutions.
  • Your voice matters. Whether it’s about navigating the healthcare system, your emotional journey, or the role of faith, family, or fear—we want to hear it.

Who Can Participate?

Anyone who identifies as Black or African American and has been impacted by a health diagnosis—whether as a patient, survivor, caregiver, or loved one.

This is your platform. We’re here to listen.

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Tell Your Life-Changing Moment

Share about a moment that changed you

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Share an Impactful Moment Along Your Journey

You’ve been through a lot. Your experience can make a real difference for others.

At The Patient Story, we believe in the power of real people and honest stories. If you’ve been impacted by a serious diagnosis—like cancer or another condition—we want to hear from you.

Helping others and creating change, only takes a few minutes of your time.
  • Answer a few short video prompts
  • Respond by video or text
  • Get featured on our website, YouTube, or social media to reach others who need to hear it.

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