The biggest cringe worthy thing that people can say about sickle cell for me is referring to us that live with the disease as sicklers. In my experience, it has been used as a derogatory term to really describe patients that providers feel are naggy or aggravating or faking symptoms or drug seekers or the likes. And there’s just a lot that that goes with being called a sickler. It is basically a slur that I don’t like. I do recognize people who use it. Some people who use it don’t understand that, but I try to let people know that it’s just not a term that I agree with. Then also, with sickle cell disease specifically, I think the thing that makes me cringe also is that people believe that it is a Black disease and it’s not, and that people believe that sickle cell patients are drug seekers and that we fake our pain or that we can have a higher threshold of pain, therefore, we could bear the disease. It’s a lot that goes on with that, but that is as much as I can say in this setting.

The word, sickler, like healthcare professionals or someone else refer to you as a sickler, that word is kind of derogatory towards a person with sickle cell disease, and that word makes me cringe when people use it. I wish people wouldn’t say it, but they don’t know unless you tell them.

Some words that people say about me, mostly doctors and nurses. She’s a drug addict. She’s a pill popper, drug seeker. She’s an addict. No, that’s absolutely not true. The last place on earth I want to be is in the ER, in the hospital. The last thing I want to do is take pills. Pills. Those pills are the worst. They don’t make you feel good. They make your pain go away, but that’s about it. That’s the only benefit for me. I don’t get any kind of good feelings from the other side effects. Other things I would say, people just coming at me like all sad and like pitiful, like pity. It drives me up the wall. This is just something that I was born with. It’s not me. It’s not who I am. But you know, I just have to accept me for me and speak out for what’s not me.

So as of a negative feedback, let’s see. I have heard some people say it’s really deadly and it can kill. That’s all I’ve pretty much heard, is that the disease is really, really bad, but nothing per se as to my standing on it. No one has ever had a negative feedback towards me or, like I said, me being irritating, or me asking for too much. They’ve always understood where I’m coming from and what I’m going through. So, sickle cell’s really, really a big deal in Africa. I’m from Nigeria, so everyone’s just kind of used to it, you know? So, I’ve never gotten negative feedback as to, “Why is this happening to her?” or something like that. It’s more so just the disease itself. They say negative things, like it’s deadly, it can kill you, it’s bad, and stuff like that, et cetera. But yeah, that’s basically it.

How people talk about our loved one’s condition. Following the conversation around our loved one’s condition can be quite negative in the sense that people seem to be quite afraid for you as soon as you mention that your loved one has this particular condition, they… Which kind of gives you… If somebody else feels anxious about what you’re going through, it tends to make you feel anxious also. And then also one of the terms that I dislike about the condition would be disabled. I don’t think that that’s a very good word. If you break down the meaning of the word, it almost means unable, which is not the case, it just… Somebody with a health condition, or specifically this health condition, has different abilities. Doesn’t mean that they have no abilities or a lack of abilities. There’s a negative connotation attached to that word. So that makes me cringe. Something that I know my loved one wishes that specifically nurses or doctors wouldn’t say or ask her, when she’s in the hospital, is what is her pain score? For some reason, I guess she’s heard that question over the course of so many years, that it now makes a cringe, specifically.

I think in today’s climate people are more knowledgeable when it comes to sickle cell. So I don’t really get any “bad vibes” from anyone. When I was younger kids at school thought I was contagious. They didn’t want to touch me. As I got older and as an adult, a lot of the ER doctors or nurses thought that I was a drug seeker and because my pain tolerance was high so the medication they would give me wouldn’t work. And so they would have to give me stronger medication at a higher dosage. And a lot of them would think that that’s all that I’m there for, because when you have sickle cell, you don’t look like what’s going on inside of your body until they run tests to see, okay, yeah, she is really sick. Then I always get judged.

I think that really only certain people will not be clear, people will not think I’m a drug addict, people not think that I’m going to be odd without any pain meds. Basically, I think I’m much better than people believing the pain, that’s what I think. The doctors say they don’t believe the pain, and don’t label me as someone seeking out for pain meds, so that’s really the key. Basically, they are really, really terrible at people understanding, and being able to understand about this condition.

Sometimes I wish people wouldn’t say is a death sentence. Sometimes I wish people would say, “How do you function with your medicine?” There are so many things. Sometimes I wish people would stop saying that we don’t look like we’re sick. There are so many perception with sickle cell patient that people just don’t understand. And also, why is your eye so yellow?

I honestly don’t discuss my disease with many people. My family of course have known my condition since I was a child. My closest friends know of my condition. They don’t talk negatively of my condition. They are very supportive. I don’t think I would associate with anyone who would think negatively or talk badly of my condition that I have no control over, because I was born with.

I wish people wouldn’t say I’m sick, “Oh, you’re sick” I don’t like that term because I don’t consider any sickle cell patients sick. We have a chronic disorder that we hurt every day, but I definitely don’t think that we’re sick.

It used to make me very annoyed when people would say they were praying for me, because it would be like saying like I had something wrong with me, which is a nice thing for them to say that they are praying, but it would make me cringe because I felt like I was not able to take care of myself. Another friend of mine actually said to me - oh, I was thinking about going to law school - and she said that she didn’t think I was going to live long enough and maybe I should do something else with my time. Those types of hurtful comments really do stick with patients. And a lot of times it is unintentional that a friend or associates would say something. Also, I remember in high school because a lot of people didn’t understand my disorder and they knew it was a blood disorder, a lot of people thought I had HIV because I was getting blood transfusions a lot, and they just were ignorant on sickle cell disease and they thought they could catch it. So there’s a little bit of social [ostracism], not by the majority of people, because I did not share my medical condition with a lot of people at that age. But just when I did, I noticed that some people were not educated on it. And even when I tried to educate them on it, they have a lot of misconceptions about the disease. You know, I’ve had a friend even in college joke and she didn’t realize I actually had sickle cell and she was joking about, “Oh, don’t have a stroke or oh, don’t pass out.” You know, which was really insensitive, especially since she was a person that was in healthcare. But you know, people don’t know, and they have a lot of ignorance in our community about it and there needs to be further education on sickle cell disease.

People say that people with sickle cell are drug seekers, they’re addicted to pain medicine. Or, “Are you really in pain I don’t see, you look fine to me. You don’t look like you’re in pain or you don’t look like you don’t feel good.” How dare you judge how I feel based off of my looks. And that’s another thing, we get judged off of our looks when we go into the emergency room to go get treated. You don’t want to go in there looking too lazy or too comfortable, but you don’t want to go in there looking too put together either. You don’t want them to think you’re just here for drugs when your pain level is at a nine. I shouldn’t have to worry about how I’m dressed to go to the hospital, should be able to put something on and go get treated and not have to sit here, well, let me comb my hair up a little bit. Let me put this shirt on, button it up. Let me put these jeans on and maybe these shoes so that the staff at the emergency room doesn’t look at me as if I’m a person here to seek drugs or if I’m just here to get high off the medication. No, I’m here to get treated. I’m in the pain. That’s why I’m here. That’s the only reason why I came here. If it wasn’t for that, I wouldn’t be at the hospital.

Some of the biggest things, actually my loved ones have actually stated basically to me was the lifespan that my child would have. Actually her possibly seeking drugs to treat her pain when she would actually go to the emergency room such as a drug seeker. Those are some of the biggest things that actually make me cringe is the aspect that others believe in that my daughter would grow up to basically be one that would drug seek to actually reduce her pain. Also my family’s continued lack of knowledge about what sickle cell is and my daughter’s life span.

Well, as far as family of people with sickle cell, they normally label us lazy. Well, okay. There’s a difference between lazy and anemic. Someone can be lazy, but they also can be tired. With this disease, you are tired a lot. You just can’t control how tired you are. So if you sleep more than others, or if you have to sit down more than those, it doesn’t mean you’re lazy, you just have a medical condition. And also, doctors and nurses, I don’t know if it’s racist or if it’s a stereotype, but a lot of them assume that sickle cell patients are drug seekers, and most of the people with sickle cell, I know hate taking pain medicine. I mean, who would want to be on pain medicine for the rest of their life? They want to live a normal life, just like anybody else does, they just happen to have a medical condition that they have no control over, that they were born with that requires them to be on pain medication for the rest of their lives. So I wish that stereotype could be eliminated, because as soon as you go to the ER or hospital, that’s what they think you’re there for, drugs. If I could get a bone marrow transplant, if I was young, I could go back in time and get a bone marrow transplant and be rid of sickle cell, I will, so I wouldn’t have to be on pain medication every month, every year, be in the hospital on pain medication, or have my bones dying, jaundiced. I mean, nobody wished for this.

I wish people wouldn’t call us sicklers. I mean, individuals who have cancer, they don’t call them cancers people. I also don’t like that… I suppose all patients are classified as drug addicts or drug seekers. We are not drug addicts or drug seekers. We experience some of the most excruciating pain in the world, and yet we’re not treated as if we’re patients. And it’s very frustrating. We’re also known to be confrontational, which I am not confrontational at all. But when you’re in so much pain and the doctor is ignoring you and telling you that your pain isn’t real or telling you, you don’t need X amount, even though you’ve been trained and peaked to know the amount of medicine that you need in order to help control your crisis, I think that’s not fair. The label of drug addicts, drug seeker, frequent flyers, saying that we come to the ER too much, I don’t like that we’re labeled as these things when we have a legitimate chronic illness and we’re suffering.