“Why is she a strong girl? Because she walks around every day on the verge of tears, and you don’t even have the slightest clue that she’s not okay.” – Author Unknown
What would you do if you had symptoms that couldn’t be seen? Pain that couldn’t be fully explained? What if you looked healthy on the outside, yet felt helpless and sick on the inside? And…what if you felt like there wasn’t anything you could do about it? This is what the millions of people battling invisible diseases feel every day. One such invisible disease, Sickle Cell Anemia, can be particularly painful, devastating, and frustrating, especially in a world where many on the outside simply don’t understand the severity or trauma such an illness brings. This week we had the honor of getting a firsthand account from a member of our own Capital Family as to what going through life with sickle cell disease is really like.
Shanail Brown, a Senior Employment Specialist with Capital Healthcare Services, has been fighting the battle with sickle cell anemia for her entire life, with the most severe symptoms coming to light during her teenage years. As if navigating the waters of this illness wasn’t tough enough already, one of the most frustrating aspects of it has been the fact that many people simply don’t understand what the disease is or how it affects a person’s everyday life. For that reason, before we continue with Shanail’s story, here’s a little background on this invisible disease.
Sickle Cell Anemia is…
According to the Mayo Clinic, Sickle Cell Anemia is an inherited form of anemia—a condition in which there aren’t enough healthy red blood cells to carry an adequate oxygen supply throughout a person’s body. Whereas healthy red blood cells are round and flexible, a person with sickle cell anemia would have blood cells that are stiff and sticky, taking on a crescent or sickle shape. These abnormal cells can then get stuck and create painful blockages in small blood vessels, inhibiting blood flow and oxygen to certain areas of the body.
According to hematology.org, Sickle cell anemia affects approximately 70,000-100,000 Americans, and more specifically, 8 percent of African-Americans. It is most common in certain ethnic groups, including people of African descent, Hispanic-Americans from Central and South America, and people of Asian, Indian, Mediterranean, and Middle-Eastern descent.
In order for a person to inherit sickle cell anemia, both of their parents must carry the sickle cell trait (SCT). It can be diagnosed with a simple blood test, and is typically found during routine newborn screening tests. (CDC.gov)
Sickle Cell Anemia feels like…
With sickle cell anemia also comes periodic episodes of exhaustion and pain, ranging from mild to severe. It can also cause painful swelling of the feet and hands, delayed growth, frequent infections, vision problems, and even chronic pain.
After sickle cell anemia took on a more prominent role in Shanail’s life, life in general started consisting of many ups and downs. The things and activities that once brought joy tend to become a little less joyous when physical pain and fatigue take over. “I’ve had a lot of painful episodes, extreme periods of exhaustion, and always being sick,” Shanail says. The pain is difficult to describe or explain to those who have never felt it, and it can increase in intensity very quickly. “It can range from just needing Tylenol, to severe pain and hospitalization,” she says. It can hit you in your chest, abdomen, joints, bones, hands or feet, and can last anywhere from a few hours to weeks on end.
Unfortunately, when it comes to treating these sometimes agonizing episodes, there aren’t many options. “There are no real treatments,” Shanail says. Pain medicine can help, but with that also comes its own host of potential problems. Some simpler and more natural treatments are your basic rest and exercise. One particular exercise that Shanail has recently found helpful is yoga. “I try to cope by doing a lot of exercise and just dealing with it,” she says. “I know it sounds cliché, but honestly there isn’t anything else I can do.”
However, “just dealing” with these painful episodes is easier said than done, especially when something as simple as getting dressed or putting on shoes becomes increasingly difficult. Fluctuating temperatures may be pleasurable or mildly annoying at worst for most people. For those fighting sickle cell anemia, however, it can mean the difference between having a normal day to feeling almost incapacitated. For Shanail, Pennsylvania’s often changing climate has presented a whirlwind of painful problems, at times affecting her schooling, career, and especially her social life. “I missed a lot of school and activities due to pain,” she says. “Lately my social life has suffered. I have no energy to do anything, or the pain is so bad that it makes me not want to do anything. I work, and I go home.”
Coping with the pain and fatigue are two difficult hurdles to jump, but trying to explain or communicate what you are feeling and experiencing to others may be the hardest. “The biggest struggle or frustration has been that nobody really knows what is going on,” Shanail says. “Having pain that cannot always be explained is difficult. I try my best to describe exactly how I feel, but it’s hard when someone can’t physically see what is bothering me.” On the outside you might look fine, but on the inside, it’s an entirely different story. Unfortunately, in a culture and society that focuses so heavily on outward appearances, this concept can become easily lost. How does this change? Relentless communication. “Talk to people,” she says. “The only way someone will understand is by talking.”
Shanail may have a tough road ahead, but at this point in her life, she mostly knows the course. She has found ways to cope, and her attitude has been a great starting point. “It is not always easy, but I try to not let [the disease] define me,” she says. She knows that sickle cell anemia is not who she is, and tries to focus on the bigger picture—despite how hard you may have it, it could always be worse. “At times it can be extremely difficult, but there are people out there who have it worse than me,” she says. “I have witnessed what the disease can do to other people—healthy people…and I hope I am around for a long time.” Anyone who knows Shanail well knows that she is a force to be reckoned with, and she’s not going down without a fight.
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Author: Michelle Adams