Hope in the Face of Sickle Cell: Embracing Life Amidst Uncertainty
More Programs and Publications Featuring Dr. Titilope Fasipe
In this program:
Pediatric sickle cell patients may encounter psychosocial barriers, but how can healthcare providers improve their support during this time? Expert Dr. Titilope Fasipe from Texas Children’s discusses common challenges for sickle cell youth and her advice for HCPs to aid patients through these obstacles.
Transcript
Jemela Williams:
Dr. Fasipe, in your experience, what are the most significant psychosocial barriers that children with sickle cell disease face during the transitional years, and how can healthcare providers better support them through this period?
Dr. Titilope Fasipe:
Let's start with the darkest one, which is death. A child starts to realize that they are different from their siblings or their other classmates. They have some version of a sick role, and they learn they have sickle cell disease and the inevitable happens. I had my mom's nursing textbook. You find the part about sickle cell disease, and it tells you something horrible, like people with sickle cell disease lifespan is till 80 years old or less than 20, 36, 50, you put whatever number on it. It's short compared to the general population and/or they had the experience that we discussed earlier of losing another family member with sickle cell disease, and you knew that person was young. Slide 3 So all of those things are elements that a child and a young adult and a teenager with sickle cell disease struggle with is first this concept of mortality. And when is this going to happen to me? I remember when I used to have as a child when I was having pain crises at the time, I always used to think one of them was going to end in death.
Like that's how scary sometimes it would get. And so I want to address that big one first, in case there are young people listening that this is something that a lot of people with sickle cell disease report. In fact, I have not yet found somebody with sickle cell disease who did not think that they were going to die young because of things that they had read or seen or heard about. And so that already messes with the mind, right? It messes with your mind. That's just a lot to take in. Slide 2 Then there's the experience of pain. And we know that pain is associated with things like depression and anxiety and also just how we cope with the world. Pain is suffering I talked about. So if you have a lens of suffering in your world constantly and repeatedly, those affect your mental health. And so the barriers associated from a psychosocial perspective for children is the fact that they're battling the sense of being in a sick role and knowing that people are worried about them. And then they're also battling what it means to struggle with the complications.
Pain is a common one, but there's other complications as well. And so that can impact whether their mood, it also impacts how they interact with the rest of the world. And so when you're now entering puberty and you care about identity and being with your peers and peer acceptance, it hurts even more like rub salt on the wound that you're different. I know a lot of teenagers, they start making decisions like, I don't want to take this medicine. Nobody else in my life is taking medicine. I feel fine. Or, and it's so odd, because it's not even trying to be defiant. It's just a frustration with why is this my life, and why can't I be more like my peers? So the other thing that ends up happening is not everybody knows a close person to them with sickle cell disease, like a friend. And so they feel quite isolated at school and sometimes in their own families, because they feel like they're the only ones with that experience. So what do healthcare providers need to think about? One is to acknowledge that those are things that go in their mind and don't be afraid if a child asks that question, if a teen talks, asks about their mortality or about what's my sickle cell going to look like in five years? Be honest with them. Meaning we don't have all the answers, but be upfront about it and explain, try to dive deep into what they're really asking.
I am a big believer in making sure people have access to counseling, psychologists, mental health therapists. I think that can help with any chronic illness, especially one like sickle cell disease, which is associated with suffering. And it helps learn skills of coping, whether that's in the school environment, family environment, and their own personal selves. And don't just blow things off like, oh, they're used to having sickle cell or, oh, this kid is a happy kid. They're fine. Really make sure that you're thinking about how they feel about things. And one of the things I'm trying to learn more and my providers, we're doing a project on this is when they're a teenager, give them some space to answer questions by themselves. They've lived a life where mommy and daddy or caregiver was answering for them for their whole lives. And suddenly you go to the adult side and that doesn't happen. Give them practice time while they're still on the pediatric side. So start questions with them first, before you look at the parent. And we also recommend actually some of the time kicking the family member out of the room and letting them have that one-on-one experience.
Those are ways that we can help with some of those psychosocial barriers. But it is quite important to prioritize this issue. It's almost I was thinking with another, I keep on reflecting on certain patients and I sometimes see the psychosocial barriers as one of the biggest things that you can change to help a patient's experience with their livelihood and quality of life. It's quite remarkable when they feel seen and heard and when they feel like they have the coping skills to move forward.
I feel like we really don't address it much is whether you're a teen or an adult, young adult, is losing other warriors and the impact that, that plays on you, your physical health, mental health, because just like you said you probably at some point of your life, you looked up something about sickle cell and saw that, oh, this is the lifespan, or unfortunately so many others with sickle cell disease have heard their doctor tell them or tell their patients that you won't live to 18, you won't live to 21, things like that. And I think when you see someone with sickle cell, whether you knew them or not, whether they were a close friend, and you see them pass away, that plays a huge impact on you because you're like, well, when will I be next? They were fine just the other day, and how long before this happens to me, what happened to them? And I think we don't, not that I want us to focus on the sad things, but it's just the reality of living with sickle cell disease.
Jemela Williams:
And I think we don't focus on the mental health and the grief that goes through fellow sickle cell warriors when they see other sickle cell warriors pass away.
Dr. Titilope Fasipe:
You hit the nail on the head, and I'm going to say two follow-up points. One, let's start with grief that you said. Grief is not just about the grieving of losing a loved one or someone you know. There's the grief of the everyday experience of sickle cell. When is sickle cell going to take something else from me, or why did this happen? We grieve and mourn the loss of several things. Some people struggle with blindness, hearing loss, bone disease, and these are not death, but they're the collective organ damage that can sometimes happen with sickle cell disease. And when you do get jarring news, it's almost like you're reopening a wound. I already knew how to deal with sickle cell disease, but now is bringing in something else. So the grief thing is real. It's broad. It involves everything from the extreme of losing somebody through death to even just the every daily occurrences or the seasonal occurrences of how your sickle cell changes. So I mentioned my 17-year-old cousin passed away when she was 17 years old, and I was living in Nigeria at the time, and she was in Nigeria as well.
And it was so crazy because I looked up to her. She was like my role model. I was just a couple of years younger. I was like, wow, she is amazing. She's beautiful. She's kicking the butt in school. She's smarty pants. She's just doing things that I didn't even think I could do. So when I heard the news that she passed away, I was like, wait, what? That's the person that I thought was healthier and better than me at achieving goals, and they're gone. Slide 2 And then my mother's nursing textbook confirmed this dogma that I had in my head that, “Oh my gosh, I am probably going to die when I'm 18 or something.” And initially it led me to a bout of depression where I was moping around. I didn't talk to anybody. I stopped doing activities. My dad noticed, and he's like what's going on? He pulled me aside privately one day. Because my personality had changed. I was just so different. And I told him that, well I wanted to do all these things with my life grow up, go to college X, Y, Z, you name it. But this book is basically saying that's not going to happen. It’s not fair and my dad told me something that I'm going to just repeat here. He told me that that life is not like ticking a bomb or a clock, like, oh, this is going to happen on this exact moment.
On this exact day, on this exact period. He was like people, we don't know the length of our days. None of us, whether that's accidents that happen to people unexpectedly to other health problems that could happen. Slide 9 Sickle cell disease may or may not be your only struggle in life, but you should not use that as a way to stop living. If anything, you should be motivated to just live your life to the fullest, whatever that looks like. And don't try to predict your ending when it's not set in stone. And that helped me, one, feel better, but then also realize that I can't predict anything that happens to me. That conversation happened when I was a teenager. I'm now 43. I don't know how long I have, none of us do, but I realized over time that I should just do my best with what I'm given. That's all any of us can do. And the more I hear of young people that die early, what I call these precious souls.
In honor of them, keep on living, because that's what they would want to be doing if they were still here with us. So thank you so much for saying all those things. And I just had to share that, because it does mean so much to me that that is a common experience with individuals with sickle cell disease. And I just want to have that, everybody to have a little bit of hope that just, just do your best with what you have.
Jemela Williams:
Thank you. That was beautiful. I love that.
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