Living with sickle cell disease can be incredibly difficult, as anyone with the disease likely already knows. You may experience pain, infections, anemia, delayed growth, strokes, and more. Thankfully, treatments make living with sickle cell disease easier, and early screening has also improved life expectancy. In addition to treatments, support and camaraderie from others with the disease can help improve your quality of life. So, what’s it like to live with sickle cell disease and how do you cope? We compiled some experiences of those living with the disease. 

Complications of sickle cell disease 

Some complications, of sickle cell disease such as strokes and infection, are obvious to the outside observer. This can help people be more empathetic to your situation and be more likely to offer support and help. 

In an article for Elite Daily, another sickle cell sufferer describes the anguish of invisible pain. “The thing that makes this disease particularly cruel is its invisible nature. It has this uncanny ability to keep its sufferers silent as it expertly conceals the damage it does to the human body and even the mind. The pain alone will drive you mad,” the author writes. He also explains that sickle cell doesn’t discriminate, and it attacks the body as well as the mind. “it has slowly and continually debilitated my brain power,” he says. 

Sickle cell disease and mental health

Living every day with sickle cell disease and the pain and other complications that accompany it can take a major toll on your mental health. In an article titled Sickle cell disease can take a toll on a person’s mental health, too, Mary Shaniqua talks about how living with sickle cell disease is a never-ending process. “Trying to stay healthy while battling sickle cell often means living overcautiously, making strict lifestyle choices to minimize any risk of adverse health outcomes,” she says. 

In a Reddit thread titled “Mental Health,” many users also discuss the way sickle cell disease has impacted their mental health. Users report feeling wrecked emotionally and being beaten down by the disease. To help improve mental health, many users suggest finding a creative outlet or hobby, such as painting. Others suggest turning to prayer, therapy, or listening to music. 

In another Reddit thread, users discuss how the mental toll can be just as bad as the physical toll. Some users also mention the financial toll the disease can take due to mounting hospital bills. Dunstan Nicol-Wilson discusses the financial stressors of sickle cell in an article titled The high costs of living with sickle cell disease. Between hospitalization, medications, and vitamins, the cost of living with sickle cell disease can be high. Beyond daily life, he also notes how keeping up with the exercise and nutritious diet that are so important to managing sickle cell disease adds an additional financial burden. Traveling can bring about additional financial stress as well. “For example, I’ll pay for extra legroom on flights to maintain good circulation in my legs, which can prevent blood clots or a crisis. I have to budget or put extra money aside to be able to do things I enjoy,” Nicol-Wilson says. 

Sickle cell treatments and medications 

Finding the right treatment and medications for sickle cell disease can feel like a never-ending battle. Living with the disease and finding the right treatment also brings the risk of side effects and complications of medications. 

Recently, sickle cell treatment Oxbryta was recalled, leaving many people living with the disease trying to find an alternative treatment and worrying about side effects. “For the many patients and families who rely on this medication to manage their condition, the uncertainty about what comes next must be overwhelming. Sickle cell disease is already an unpredictable and painful condition to live with; now, patients who found some relief from Oxbryta must work with their care provider to figure out next steps,” says Dunstan Nicol-Wilson in an article titled Oxbryta’s withdrawal is a setback in the fight against sickle cell disease.

If you have taken Oxbryta and have subsequently suffered negative consequences, you may be eligible to file a lawsuit against the manufacturers of the drug, as others have already done. We can help get you in touch with an Oxbryta lawyer who can examine your case.