September was Sickle Cell Awareness Month in the United States. Every year at this time, I like to take a moment to reflect on all the incredible work being done by and for the sickle cell disease (SCD) community, while recognizing that we have a lot left to do.
Great strides are being made in raising overall awareness about SCD, but I believe there remains an urgent need to increase understanding that SCD is not just a physical disease. SCD can affect all aspects of a patient’s life, including emotional well-being.
What I’ve heard time and time again from people living with SCD is that they often feel isolated in their journey. Kyle, a patient living with SCD, recently summed it up nicely when he said, “Sometimes it is hard to just get out of bed. What it means to live in pain is not something that many can truly understand.”
For Kyle and many others who struggle with the invisible symptoms of SCD, I want to focus this column on the mental health challenges of SCD. It’s an important aspect of the disease that doesn’t receive the attention it deserves. Only by increasing understanding of these issues can we help SCD patients feel less alone.
What are some of the “invisible symptoms” associated with SCD?
Depression and anxiety are common among those with SCD. Some contributing factors may include the unpredictability of when they’ll experience a pain crisis, the job instability and financial stress that can result from frequent hospitalizations, and the realization of a potentially reduced life expectancy.
In addition, the impact of racial bias and stigma directed towards SCD patients should not be underestimated, particularly as it relates to the legitimate use of opioids to ease the excruciating pain that comes with a vaso-occlusive crisis (VOC). These pain crises occur when blood flow is blocked, which can cause debilitating pain. Some patients experience more than six VOCs each year. People who are unaware of SCD may label patients “drug seekers.” Not only does this discrimination and stigma impact medical care (see my previous column on this topic), but it also can take a toll on a patient’s mental health.
How can these symptoms affect individuals with SCD?
From a very young age, patients may have low self-esteem and feel embarrassed about having the disorder. Over time, low self-esteem combined with severe pain and hospitalizations, can lead to withdrawing from social activities and missing school or work—further exacerbating feelings of isolation.
There is also growing evidence in recent years that the relationship between physical and mental symptoms of SCD could be a two-way street, with depression and anxiety being linked to poorer physical outcomes in people with SCD.
For example, some research suggests that SCD patients who experience depression and anxiety report more frequent pain episodes, more frequent hospitalizations, poorer pain control and sleep quality, and other physical effects. While more clinical research is necessary to further explore the relationship between physical and mental symptoms to overall health in people with SCD, a comprehensive approach to SCD care should address both the physical and mental aspects of the disease.
What can I do to support someone living with SCD?
The first step to support people with SCD is to recognize that they may be dealing with a lot more than meets the eye. That includes both physical pain and emotional stress that may not be visible to you.
It is also important to help create an environment of open communication. Sometimes the best way to get involved is simply to just talk about it.
There are also great resources out there for SCD patients, as well as their loved ones. If you or someone you know is living with SCD, I encourage you to use the following sources of information to get involved and provide support:
• Health care professionals, including mental health specialists, are the best resource for SCD patients who may be feeling anxious or depressed. They can provide counseling, treatment, or make connections to other sources of information or support.
For immediate mental health assistance, consider using the Crisis Text Line by texting “home” to 741741. This unique hotline is available via text message platforms to anyone experiencing mental health difficulties or an emotional crisis. Through text, highly trained counselors offer support and guidance to help people through a mental health crisis.
• Local schools can also be an important part of overall SCD management for children and adolescents who may need to miss school due to frequent pain episodes. Contact relevant educators and administrators to identify ways to help keep kids feel engaged and connected to their peers, even if they can’t always be there in person.
• Local advocacy organizations can provide information and suggest ways to get involved in raising greater awareness about SCD.
• oneSCDvoice is a digital educational platform for the sickle cell community. It includes a library of trusted SCD resources, a social wall that provides a safe environment for community-driven conversations, educational tools about clinical trials, and other helpful information.
Dr. Kevin Williams is the chief medical officer for Pfizer Rare Disease.