Marissa's Story
The following excerpts are from a conversation between University Blood Initiative Campaign manager Aaron Malekan and Sickle Cell advocate Marissa Cors. Cors is a 5th generation Sickle Cell patient who experienced living with, dealing with, and surviving SCD. She is a patient advocate and community outreach liaison with her family’s nonprofit, Axis Advocacy for Sickle Cell Disease. These excerpts have been lightly edited and condensed for clarity.
On being a sickle cell patient during the COVID-19 pandemic
Two, three, five years ago, we would be having this conversation, and I would be either in a cancer center waiting to be admitted, or I would be in a hospital room, but unfortunately, thanks to the opioid crisis, and COVID, I honestly don't trust the staff at the hospital I've been going to since I was 11 years old. Yeah. That's the part that is scary. Yeah. So we're curing from home. It's not going too bad. It would be nice if there was like, well, no, I can't even say that. It's going to say it would be nice if I had somebody to like bring me ice and things, but no, I do have that. I have a little sister, that part works.
You know, you hear a lot, “Oh, it's a great time for sickle cell. Oh my God. It's so amazing.” You know, I follow all these doctors on Twitter every day, “So awesome to be working as a hashtag, #SCD. So cool. Oh my God. I learned so much. Who would know?” They just sound like really annoying cheerleaders, and I find it very, I find it very frustrating because, whereas it is a great time for sickle cell research, it is an absolutely horrible sucky time to be a sickle cell patient.
On the “culture of cruelty” and medical mistreatment
I call it the culture of cruelty, but for some reason, this culture of cruelty not only exists but dominates when it comes to sickle cell adult care. I think I experience a full culture of cruelty, most definitely.
The only other place I've seen it is HIV/AIDS. You know, they hate AIDS, and anybody with HIV, they believed should just be hanged. And you know what, within 20 years, they were able to turn that around and change that image, which is absolutely amazing and is to be commended.
Whereas it is a great time for sickle cell research, it is an absolutely horrible sucky time to be a sickle cell patient.
But sickle cell dealt with so many other issues as well. So it's out. I hate having to say it's complicated, but the fact of the matter is that I guess it's complicated because in the three years that doctors and nurses spend in university, they get three hours, one day, about sickle cell. And then they get on their first hospital floor, and they're not educated about this illness that has killed me twice…. They don't educate, but they warn them. “Oh, those are sickle cell patients, be careful because the minute that you offer them any type of pain medication, they're gonna take it, and they're gonna want it. They're going to want more and more.
It's like, I fucked up their day because I have sickle cell, you know, it's like sickle cell didn't fuck up my day. So that's cool. And then they will, I mean, they just blatantly lie. “We don't have that medication here. We won't do that here. No, we can only give you one dose of IV pain meds.” Like what? Oh, okay. And why? Oh, it's about their comfort. Not my pain, not the fact that I'm suffocating from the inside out quite literally, but because they're uncomfortable.
So I have no idea. What sickle cell has in the future.
But I do know that if we don't get our medical providers and professionals to start hauling each other out on their bad, unprofessional, discriminatory behavior, as patients, we don't have much of a chance to see that universal cure or kind of improvement.
On how hospitals treat sickle cell patients like addicts
And then how do you not only use one illness as an excuse to not treat the other illness, but then on top of that refuse treatment for the latter?
If we don't get our medical providers and professionals to start hauling each other out on their bad, unprofessional, discriminatory behavior, as patients, we don't have much of a chance to see that universal cure or kind of improvement.
Yeah. I'm confused, but that's what happens to us. “Oh, you know too much about the medication you're asking for.” I would think that that's a plus, just a thought. I, again, I've been doing this for 44 years, got 125 years of familial history and memories behind me. Like whatever. I should know what it takes to make me feel better.
Why am I being punished for that? Nothing more than I'm a woman. I'm a Black woman. I'm a Black woman that you can't quite tell how old I am. And I'm a sick Black woman. That to be sick in this country is damn near next to addiction. For some reason in this country, if you're sick, you're also stupid. I don't know why they come up with that one, but you know, these are all first-world issues and you don't get this anywhere else.
And the fact that the media is stirring hell, even in our government, all of that reflects in how sickle cell is treated.
SCD stats & its state in the USA
[People] in California with sickle cell die 10 to 15 years earlier than the national average. The national average is 47 for women and 43 for men. So, at 44, I have outlived the average woman with sickle cell in California by seven years. Ten to seven years. Yeah.
And you know what, the thing is that this is a first-world problem. Sickle cell is the world's largest hereditary illness, obviously, it's a global issue, but how we are treated and why we are dying in the hospital or the day after we leave the hospital, that's where the first world problem comes into play, because, where we're dying and we're suffering, because it's okay for doctors and nurses to ignore us. And it's okay for them to question a doctor's orders as being too much, or are you sure, whatever, like, are you serious right now?
…
I'm a sick Black woman. That to be sick in this country is damn near next to addiction. For some reason in this country, if you're sick, you're also stupid.
So like, there's just, there's no oversight. There's no fear of being fired. There's none of that.
And that sucks, because they know it. And our issues really boiled down to this country. One of the worst things you can be other than being an immigrant/person of color, outside of that, is an addict. Our country has made being an addict the most shameful, awful thing that one can do because you've wasted your life. What did you do to the family and go down the list? And that's why diagnosing addiction is really arduous, just painstakingly long…. The most important part of your diagnosis is the patient/addict’s ability to say “I'm an addict,” because we know how badly, you know, that could really influence one's life. And we don't ever want to do that right yet. And still that simple. They use addiction as a means to not take care of you, to throw you out of the hospital.
Mariah's Story
The following excerpts are from a conversation between University Blood Initiative Campaign manager Aaron Malekan and sickle cell advocate Mariah J. Scott. In addition to being a sickle cell patient, Scott is a chronic disease epidemiologist who serves a population of patients with sickle cell anemia by providing research and advocacy. Scott is involved with various advocacy groups, including Sick Cells, Sickle Cells 101, and Sickle Cell Association of New Jersey. These excerpts have been lightly edited and condensed for clarity.
When I am addressing health professionals such as nurses and doctors, it's really important to reiterate that I am still a person at the end of the day… I feel like a lot of doctors and nurses miss that.
This disease [sickle cell] is very unpredictable as well. Like one day you’re going for a jog, and then the next day you have to go to the emergency department and eventually get admitted because you’re in so much pain. And, everyone describes the pain differently. I always describe the pain this way: imagine someone is putting a rubber band around your whole body and stepping on LEGO. I use a LEGO example because I think everyone has experienced stepping on LEGO. It's almost like because you have that rubber band feeling, everything is being constricted. And then you’re stepping on a LEGO and you’re being pricked with a needle at the same time; it feels sharp and intense. So like I said, sometimes it can be so intense that it can be hard for me to walk, or I can’t talk, or I can’t breathe or concentrate.
My family is my number one foundation. You know, from day one when I was born with this disease, [the doctors] said that not only was I diagnosed with a disease, but my entire family was diagnosed with a disease.
On the outside, I look like a normal person; I am working, and out on the street you don't see that I have things going on unless I tell you. But then when I have a crisis, people can't grasp that I can’t just “take Tylenol or Motrin and go lie down”. It’s more than that.
When I am addressing health professionals such as nurses and doctors, it's really important to reiterate that I am still a person at the end of the day… I feel like a lot of doctors and nurses miss that. It's especially annoying when a nurse comes in and is like “oh, you're the sickler.” You know, I don’t like to be labeled. Nobody likes to be labeled. I think the main thing is that you're still a person. I’m still me, and we have to be treated as such, even though we have something different going on. I feel like some doctors think they have all the answers. Maybe ask us questions. You're in charge of my health care, so I think it's important that you ask us questions. You know, to ask us questions sometimes instead of throwing around medical terms. We can be at a doctor's appointment and have no idea what the heck they are talking about.
Some people listen to music to distract themselves when they’re in the ER. For me, I’m a huge bookworm. I like to study and read; that’s my out. I bring my iPad and my phone; that is my distraction. The pain can be so intense, you can’t even think, or doing simple things like walking or opening a water bottle are sometimes hard for me. So I think that’s another reason ER doctors think like, “Oh, you're sitting here reading, watching TV, and listening to music- are you really in a crisis? How much pain are you in?” But that’s a coping mechanism, when you're in that much pain, for a lot of sickle cell patients.
My background is in epidemiology, microbiology, and molecular biology. So, fortunately, I do know the terms they are saying, but not everyone does. I think that’s really important. There was a long time when I felt extremely alone. In high school, I didn't know anyone else with this disease, and I constantly had to explain it to people… We need to tell each other that we’re not alone, that I've done this before, that I’m there with you; I experienced it too. So let's come together and help other healthcare professionals and researchers to dig deeper into this disease.
The pain can be so intense, you can’t even think, or doing simple things like walking or opening a water bottle are sometimes hard for me.
Because I got the COVID vaccine, and because I have the antibodies for it, my last transfusion, which was towards the end of September, took almost two days for me to find blood. It’s kind of just in my head now that we’re in a pandemic where people who had COVID or were vaccinated have created antibodies, so I think blood donations should be a big priority now because we can match with the antibodies quicker.