Laboring for Sickle Cell Trait
To labor ceaselessly upon a work unrecognized as to its merits is a difficult task. If you view the etymology of the verb labor, you will find the true meaning from the late 14th century - "perform manual or physical work; work hard; keep busy; take pains, strive, endeavor... from Old French laborer to work, toil; struggle, have difficulty."1
Toiling for sickle cell trait
Sickle cell trait patients are toiling and tired of hearing "sickle cell trait is benign" when "the issue of whether it is clinically benign or a significant health concern has not yet been resolved," according to one study. 2
When a person with SCT goes to the emergency room, they’re dismissed after hours of waiting and leave with no more information they had before they got there. We know all too well about laboring for whatever condition or “conditions” we have.
Imagine living with an invisible illness
Imagine for a minute that you are a sickle cell trait patient. First off, in most cases, your health issue may be invisible. Over 10% of Americans have a medical condition that could be considered an invisible disability, according to one 1994 survey.3 An invisible illness refers to individuals who don't use assistive devices, such as walkers.
Misdiagnoses are common
Many sickle cell trait patients have been looking for answers or a diagnosis for years, and our concerns feel invisible and hold little weight, valid given that 12 million adults receive misdiagnoses each year in the U.S.4 "A misdiagnosis is defined as an incorrect diagnosis of an illness or condition. It’s a wrong conclusion about a disease – a decision that a patient has or doesn’t have a particular illness or condition, when in fact they have a different one or none at all," according to one law firm. 5
Does your doctor care?
As you might expect, sickle cell trait patients get better care when clinicians listen to them.
One study found that 224 instances of behavioral and interpersonal factors could reflect unprofessional clinician behavior. Some factors that may lead to poor care include healthcare professionals ignoring patients’ knowledge, disrespecting patients, failing to communicate, and manipulation or deception.6
Hoping for better care
Currently, I feel that sickle cell trait patients have to squelch errant thoughts that might sound foolish: Don’t ask too many questions, defer to the expert, be ‘a good patient'... instead of having a reciprocal dialogue about how we feel each day in a body that we have become specialists in its day-to-day operation and feelings.
Perhaps, one day our incessant exertion will be done, and there will be no need to debate or ask for assistance. However, sickle cell disease patients are still laboring 111 years after the discovery of sickle cell disease.
What keeps you from sharing your story?