Living With Sickle Cell Disease Is a Constant Battle With Pain, According to One Woman Who Has It
People always tell Danielle Jamison, 35, that she "doesn't look sick." But the genetic blood disorder she's battled since childhood makes day-to-day life a challenge.
This article is part of Health's series, Life Interrupted: Living With an Invisible Illness. Each month, one women will share what it's like to appear healthy on the outside while navigating daily life with a serious physical or mental health condition.
“You don’t look sick.”
That’s something I hear all the time. It's hard to get people to understand that I don’t look like what I’m going through.
I have sickle cell disease, a complex genetic blood disorder that affects the shape of red blood cells. I'm one of millions around the globe with this condition, which is why September is Sickle Cell Awareness Month, a time to focus attention on the need for more research and new treatments.
People with sickle cell disease inherit an abnormal hemoglobin gene that prevents the proper delivery of oxygen to the body’s organs, which is why the form of the disease I have is also referred to as sickle cell anemia. The disease is characterized by unpredictable, severe, and painful events known as “sickle-cell pain crises.”
I was about three or four months old when I had my first crises. My dad remembers me crying and crying and crying, so he and my mom took me to the hospital. That’s when they found out. (Neither of my parents have the disease, but they both have the genetic trait.)
Growing up, I was always having pain. I remember being in kindergarten, and one day in class I started having it in my chest. It was so bad that the only thing I could do was burst out crying. I think at that moment I started to understand that I had something serious going on.
When people ask what the pain feels like, I tell them to imagine that you’ve stubbed your toe or banged into something really sharp—now imagine that ten times worse. It’s constant, like you’re getting hit over and over and over again.
But I was as normal as I could be as a kid. My parents would tell me and my younger sister, who also has sickle cell disease, “Go outside and play if you want. If you get sick, we’ll deal with it as it comes.” As a teenager, I was a cheerleader. My close friends were all very protective of me and cautious. But I didn’t want sickle cell to keep me down or hold me back. If I had to be hospitalized, that was just the way it was. I wasn’t going to be sheltered.
Managing school and 'pain crises'
Then I went to college about six hours away from home, to Virginia State University. Of course, the plan was to go for four years, get it done. But it didn't work out the way I wanted: In my first semester, I got really sick and had to have my gallbladder removed. And in my sophomore year, I got really sick again. Not long after, I transferred to Winthrop University in South Carolina and moved back home.
The transition from adolescence to adulthood—the way that your body changes, all of the things you have going on in life—causes so much stress and strain. And anything that puts strain on your body can cause a sickle-cell pain crisis. So I know that had to be part of the problem. But even after moving back home, I was in the hospital so much that I ended up having to withdraw from school there, too, after one semester.
That was a really low point for me: I was at the age when you’re thinking that life is going to go a certain way and you have things planned out, and it was impossible. I'd think, Don’t even make a plan, because it’s not going to work. That was very depressing.
It was the first time that I was able to feel how uncontrollable and unpredictable sickle cell is. I’m pushing through, I’m trying, I’m doing all the things that I should be doing, I’m going to the doctor...but it just seemed like nothing was working. I just could not get better; I kept having crisis after crisis after crisis.
Dealing with the stigma of a 'Black disease'
When you go to the emergency room as much as I have, the doctors and nurses get to know you. But that doesn’t always work in your favor. Because they’re like, “You’re back again?”
Sickle cell disease comes with the stigma that it’s a Black disease, because it affects African Americans more than any other race. And everybody knows that it’s not just Black people: White people have it. Some Indian people have it. But because it’s more directed at Black Americans, that makes it a “Black illness,” and that [brings] the stigma and the stereotypes. Being African American is already a tough thing, and it’s just hard to get people to understand.
One of my own doctors said, “White people can go to the emergency room with the simplest thing and it’s easier for them to get access to opioids than it is for an African American who is known to have this severe illness.” So we’re always getting scrutinized and having to fight a battle just to be able to come to the hospital and get treatment. You know, I don’t want to be there.
I know that emergency-room doctors don’t have the best understanding of sickle cell. But if you’ve been around it at all, you understand how tough it is. And yet for whatever reason, they just figure we’re there because we want the drugs. They think, “You can’t always be in this much pain all the time.”
Becoming a mom
I was able to go back to college when I was 24, and around that time, I started taking hydroxyurea—which, until recently, was the only FDA-approved medication for sickle cell. I was weary of it in the beginning. I had heard the stories of people who did not have success with it and about the side effects (hair loss, upset stomach), but I gave it a try, because I’m the type of person that makes judgments based on my opinions. In the beginning I had a hard time with it—we did have to play around with the dosages—but it seemed like it was starting to work. And then I got pregnant.
The pregnancy itself was good, but it caused the sickle cell to go haywire. I was in constant pain from my second trimester on, and I had to withdraw from school again, two weeks before graduation. I stayed out for about a year with my daughter (who does not have sickle cell disease), then went back and redid my last semester. Finally, in 2011—five years later than I’d planned—I graduated from the University of South Carolina-Beaufort.
I eventually wanted to become a school principal or guidance counselor, but that would have required a little extra schooling, and I wasn’t able to continue on. Sickle cell...it’s tiring. After my daughter, I was sick a lot, in and out of the hospital. I couldn’t get a job. I couldn’t work. I wasn’t even able to try to get a job.
I ended being a stay-at-home mom. Of course there are times when I feel like if I was able to have a career, if I was able to work, I would be able to do so much more for my daughter and myself. But I accept my situation. I’m not able to have the life that I thought I wanted, and I’m fine with it. I’m able to handle the cards that I’ve been dealt. It’s made me a stronger person. It’s made me more open.
The relationship I’m in now was hard in the beginning, because I was sick for a while and [my boyfriend] got really scared, but it’s been eight years, so we’ve been sticking it out and he’s been there with me. I’ve also had my younger sister [for support]; I’m lucky to have somebody who understands what I’m going through.
Finding some relief with new meds
There is no cure for sickle cell, but the good news is I started a clinical trial called SUSTAIN run by Dr. Julie Kanter, the director of the adult sickle cell program at the University of Alabama at Birmingham, which has me taking an FDA-approved drug called Adakveo (crizanlizumab).
I’ve had very good success with it. I’m able to be more active, and that’s a good feeling. I used to have to wake up a half-hour or hour earlier than my daughter so I could take something for pain before I had to get her up and ready. Now most days I’m able to get up and get going immediately. I’ve volunteered at her school—something that I know for a fact I wouldn't have been able to do before this trial. And my daughter dances, so we’ve been all over the place at dance competitions and practice.
Navigating the coronavirus with an invisible illness
With Covid, I’ve been pretty much staying inside. The only thing I go out for is to go to the grocery store. Luckily, my sickle cell clinic has stayed open, so I’ve been able to go there for pain management. I went to the ER one time. It was over a weekend and I was in a lot of pain, so I really needed to go. But I’d been trying to stay away, because I wasn’t really sure how it would be, as far as how they were keeping Covid patients separated.
I always tell people: I’m a fighter. I don’t allow sickle cell to run my life. I choose to live. Being a mother has really pushed me, because I want to be there for my daughter. I want to see her graduate from college and get married and have children. Now I have moderate sickle cell crises to the point that I still need to get pain treatment. But the pain is not interrupting my life as much as it did before—and you feel good when you don’t have to worry about pain all the time.
If you have a story to share about living with an invisible illness, email us at firstname.lastname@example.org
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