5 patients. 1 doctor. 1 MODERATOR. 1 Goal.ADDRESS PAIN INEQUITY AT THE SOURCE

Elaine

To truly relieve pain, we need to put an end to systemic bias and to believe black people when they say, t hey're in pain.

Elaine

What we're all here to talk about is something that we have in common, which is not being believed, not having our pain taken seriously. And each of you represent a much bigger medical phenomenon, frankly, that needs to be exposed and addressed, and it's an issue around pain inequity. Just to characterize this issue of pain and equity. I just want to share a stat that I think will resonate with all of you.

Elaine

It's from an Advil study on pain equity, and it says this, “among black people suffering from pain, three in four say they believe there's bias in how pain is diagnosed and treated. 74%. So I share these stats to underscore that you are not alone in what you have experienced. And that's why we're here to to validate your stories.

Elaine

So Etisyai. you too have experienced your pain being dismissed within the medical system. Tell us your story.

Etisyai

So at age 14, I had already started experiencing excruciating menstrual cramps. I would go to the doctor and I would tell them all my symptoms and they would just be like, you know, it's just a period, you know, that's just how it goes. You're just a woman, you know, this is what women have to go through. You know, you're you have to be strong because this is not going to end until you hit menopause.

Etisyai

And it's just like, why are you trying to minimize what I'm experiencing by saying that this is what women go through? This is not what women have to go through. I moved down to Florida April 9th, and ten days later I was in emergency surgery. But when they went in there, they saw so much damage. And now I'm dealing with the consequences of the negligence that I've been facing all these years.

Etisyai

They had to remove my left ovary. They had to remove my fallopian tube and, you know, the damage was already done. So it's kind of like, was it on me because I wasn't going to the right doctors or is it that you guys are not paying attention and you just don't care about the pain that I'm experiencing? And I really do feel like it was the latter.

Elaine

This is a case where you did everything right. Thank you for sharing.Mark, I'd love to hear you share a little bit of your story. I know you you went into the E.R. with chest pain.

Mark

This started one morning and I woke up and I just tried to breathe. It just felt weird when I was trying to breathe. So I finally went into the emergency room, and their initial observation was they couldn't find out what was wrong with me. So they sent me back home, said just take some over-the-counter medicine, went home. I just kept getting worse and worse and worse.

Mark

So then I go to the emergency room. They couldn't find anything that was wrong with me. They sent me back home again and I got worse and worse. At this time. I just needed the help of anybody and I just felt like I was being lost and left behind. I got to the point where I it was the final day where I thought, this is gonna be my last day on Earth because my breathing was just terrible.

Mark

And like, I could feel my heart slowing down. I had my son and his mom, they had went to another location because I didn't want to get sick with whatever I had. So I called her and I said, I need to speak to my son. And she said, Why? I said, I just want to tell him goodbye one last time and that I love him.

Mark

And I didn't know I was if I was gonna get a chance to see him grow up any further, I wasn't gonna be there to talk to him about women and how to date you know, how to navigate through life. The different things that you may come in contact with, the conflicts and all that. And his mom said, No, we're coming to get you. And they rushed me to the hospital.

Mark

They said, well let's let's check out his heart. Then they found out I did have fluid coming around my heart and it was called pericarditis. And they sent me to a cardiologist and I was telling them what I was feeling. And he kept saying, no, I don't think you're feeling that.

Mark

It couldn't possibly be that. And I basically had to beg my doctor to do bloodwork because that's how they found out that I had an inflammation in my heart the first time. He was reluctant to do the blood work, but I kept pushing and kept pushing like, Look, please do the blood work. He finally did it and it was at this point, I'm like, this whole time, I think I'm going crazy, but I know something is going wrong.

Mark

Nobody's listening to what I'm telling you is going wrong. And I just want you to hear that I'm telling you. I know my body. I know what I feel. You can't tell me what I feel, but something is wrong. They just wouldn’t listen to me. And it was, it was aggravating, thinking like, I don't want to leave this Earth and not see my son again.

Mark

I won't leave this Earth knowing I have so much more I want to do. But I thought I was going to be leaving this Earth at that point.

Elaine

You said that you got to the point where you thought it was the end for you and you thought that you weren't going to survive it. But you did survive it and you're here to tell your story. So many heads are nodding because we all have experienced some some portion of that. I'm sure. Deirdre, I'd love to talk to you next.

Elaine

So your sixth pregnancy you’re experiencing chest pain.

Deidra

When I went to the hospital, I gave a normal birth. Everything was fine. And then afterwards I was like I was having a lot of chest pain, like heaviness. I didn't know how to describe it. And I was telling the nurse, I said, I was like, I don't feel right like something feels very weird in my chest.

Deidra

She was like, Oh, well, when you when you go home, everything will be okay. So when I went home, we was carrying stuff up the stairs and I felt like a, like a pressure in my chest, like something I kid you not. It felt like something tore, My grandfather was like, I think we should go call another doctor.

Deidra

And they came and did an EKG. They was like, the EKG is abnormal. I was like okay, so they did an ultrasound on my heart. It was like well you have a leaking valve and everything. So I was like, okay, my troponin levels was very high. He was like that means you having a heart attack. I was like, I'm sitting here talking to you.

Deidra

There’s no way I'm having a heart attack. I just left the hospital from having a baby. What happened was my artery tore and it flapped over, so it stopped all the blood from properly flowing through. So it was it was a very scary experience, obviously.

Elaine

So you had a heart attack?

Deidra

Yeah.

Elaine

I’m so sorry. As a mom, this story really resonated with me a lot. All right, so, Derek, let’s go with you next. I would love to hear your story.

Derek

I've had migraines since I was ten and for a long while, people believed men didn't get migraines. It got so bad, I drove myself to the emergency room. And this doctor comes in, little woman, and she looks at me, “Oh big men don't get migraines. You sure it's a migraine?” And she's just arguing with me that I don't have a migraine.

Derek

And I threw up on her. Oh, All of a sudden, they're flying around, getting me the drugs and everything that I need to stop my migraine. We shouldn't have to fight that hard to be taken care of. It's both the skin color and the size. You know, you don't feel that they diminish what I'm going through.

Derek

So now I go to a medical. When I approach a medical professional, we're at war. I'm coming in knowing I got a fight you.

Elaine

Don't accept what they tell you. Follow your instincts and keep advocating for yourself. Hearing these stories arms us with tools and with a different protocol, a different way to navigate them. So thank you for sharing that.

Elaine

Inaayah you were diagnosed with sickle cell?

Inaayah

Yes, I have. I was diagnosed with sickle cell anemia at birth.

Elaine

So you have learned how to navigate life with sickle cell anemia, with chronic pain. Your whole life?

Inaayah

Yes, we call it flare ups. So around two years ago, I started experiencing one of my flare ups. I went to the emergency room and I told them all of my symptoms, you know, just like very upset and crying and, you know, because I was feeling so much pain. So the nurse called me in, she sees that I'm visibly, you know, in pain and she's like okay

Inaayah

I'm going to, I'm going to try to get the doctor right away. You know, she was she was very sympathetic. She asked me of my pain level and I told her ten out of ten she was okay. Okay. So what usually works for you? So she was like okay I'll go bring the doctor in and I'll tell him. So upon coming in

Inaayah

He didn't even say, you know, greet himself. So you say your pain level is a ten out of ten how are you talking right now? He was trying to be petty with it. Like he wasn't being sympathetic at all. He was like, if it was a ten out of ten, you wouldn't be talking. So you really should say nine out of ten.

Inaayah

And he was like, first of all, I just know that I'm not going to give you that amount of pain medicine. And he's talking about two milligrams. It's like one I.V. shot. So the nurse, she literally just butted in and she was like listen. She was like don't you see that this girl is in pain. She was like the record say that she's taken this before.

Inaayah

I looked at her records. You haven’t even looked at her record. The doctor was white and the nurse was also white and when she was talking to him, he was looking at her in her eyes. He was he seemed more receptive, receptive to her telling my story than me telling my own story. So after that, he would just say, okay, fine, order it from the pharmacy and see if they approve it. She was like you know that they're going to approve it.

Inaayah

Me my mom and my sister had been crying, talking to him for like the past 30 minutes. And she talked to him for maybe like 5 to 10 minutes. And he he he approved it even unwillingly and just walked out of the room and she was able to give me the medicine.

Elaine

I'm so sorry that you've had to go through that. It’s not normal. It is common and it is not normal. So, Dr. Uché, after hearing all of these experiences, what do you think this tells us about the state of the medical system as we know it?

Dr. Uché

Yeah, this tells us clearly that our health care system is in dire straits and it is broken. So we have to do work on educational level, on a protocol level within hospitals and health care institutions, and think about strategies for increasing diversity among health professionals.

Elaine

We are not anti doctor. No, none of us up here are anti doctor. We recognize that doctors have an essential place in our society. What we are acknowledging is that the system in which doctors work is broken, it's sick, it needs healing, it needs help so that doctors can do what they were put there to do, which is care for people like us.

Elaine

With that, I'll just say I think, you know, with all of us coming together, I think it's an indication that if we continue to work at this, the day will come when pain inequity will be a thing of the past. I believe that I believe it's possible in our lifetime. But we can't we can't silence ourselves and we can't give up the fight.

Elaine

So Dr. Uché, Derek, Mark, Deirdre, Inaayah, Etisyai thank you so much for being here.

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