Health-related stigma is a major public health issue that is getting more attention. Young adults with sickle cell disease (SCD) are at danger for health-related stigmatization due to the many challenges of the disease.
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Sickle cell disease (SCD) is a group of genetic disorders that affect red blood cells, causing them to become shaped like sickles.The sickle-shaped cells move through the blood stream where they can become stuck and cut off blood flow, making severe pain and organ impairment.
The disease affects Africans and African Americans. According to the National Institutes of Health (NIH), It is calculated that one in 500 U.S. African American births is affected with sickle cell anemia.
Symptoms of Sickle Cell Disease
Mostly the major symptoms of sickle cell anemia is as a result of the abnormally shaped (sickled) red blood cells hindering the free flow of blood that circulates through the tissues of the body.
The tissues with afflicted circulation suffer loss from lack of oxygen. Impaired tissues and organs of the body can cause serious disability in patients with sickle cell anemia. The patients suffer episodes of intermittent "crises" of frequency and severity, determined by the degree of organ involvement.
Common major features and symptoms of sickle cell aneamia includes:
- Fatigue amd Aneamia(Loss of Strength and Deficiency of red blood cell)
- Pain crises; Mostly Bone pains
- Dactylitis and Arthritis; swelling and inflammation of hands and feets.
Health-Related Stigma
Stigma occurs when a negative stereotype about a group is attributed to a person.
Health-related stigma refers to the rejection of people with certain health conditions, based on a negative stereotype.
In the case of SCD, health-related stigma can be compounded by racism (actual or perceived) and can pose significant barriers to getting appropriate care.
For example, the looking for a specific medication(like Codine or Tramadol) for chronic or acute pain may be perceived as the behavior of a person affected by substance abuse. Or, people who are experiencing SCD-related pain may be falsely thought of as malingers (those who pretend to be sick to get out of their responsibilities).
I experienced such 3 years ago, I was rushed to the hospital from the examination hall, I couldn't breathe on my own, I needed oxygen badly. The Doctor on duty said they should leave me that I am just pretending.😒😒😒.It was after some minutes the Heamatologist came to my aid.
Unluckily, people around , healthcare providers, and even family units sometimes get an unfair view of people who have SCD, which can result to bias and stigma.
And though there are tactics person with SCD can follow to reduce stigma, but healthcare providers, families, communities and the public at large may also play a role in reduce stigma.
Getting educated; (Read and Know about the Disease),
Having compassion: and learning to listen are important first steps everyone can take to overcome SCD-related stigma.
If we all take the time to listen and love each other, this world would be a better place.
Unfortunately, in some instances, even healthcare providers may think that SCD patients are exaggerating their pain or looking for painkillers to satisfy an addiction.
Why Stigma is a Problem in Sickle Cell Disease.
There are many key factors that can contribute to stigma in SCD.
The most common are:
Physical factors.
These make people with SCD stand out. In SCD, someone may have Jaudice (a yellow discoloration of the eyes) that may cause people to judge them. Adults and adolescents with SCD may have joint damage, which makes them not to participate in activities that involves physical effort resulting in them feeling unusual than their peers.
Someone with Sickle Cell Disease may seem stoic.
A reduced expression of emotion may be a way of dealing with the chronic pain that is attach to SCD. This may lead others to think that a person with SCD is not going through pain, when he or she really is.
People with Sickle Cell Disease often know what pain drug works for them and even what doses are needed.
SCD patient go through chronic pain and manage themselve frequently. This may give providers in the health center or other settings the wrong impression that they are affected by drug abuse, rather than simply being learned about their health needs.
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People with Sickle Cell Disease often suffer from extreme pain and fatigue.
The frequent pain episodes can lead to absenteeism from school or work. This may create an untrue impression that the person with SCD is “lazy.”
As a result, SCD-related stigma may leave some sufferers feeling mistrustful of the healthcare system.
What To Do About SCD-related stigma.
Strategies that may help reduce the effect of stigma include counseling, therapy, support unit , empowerment self-help, and advocacy.
There are also several things,as a person with SCD, can do to deter SCD-related stigma when seeking medical care.
Here are some tips:
Stay up-to-date with your clinic and keep yourself informed about your present condition.
Cooperate with your hematologist and your regular healthcare team.
Create a ‘pain plan’ (which is a list of pain medications that works for you) and carry a validated copy with you at all times.
Carry a document with you at all times that summarizes previous hospitalizations or Crisis. The individualized pain plan from the Heamatologist can also be included.
If you have acute pain, document the symptoms, your previous blood transfusion,the previous and current PCV(blood percentage) before and during attempt to manage pain with therapy.Take more water and use your daily drugs in order to reduce and manage pain before it becomes an emergency.
These tips may help you as SCD-patient to avoid bias and stigma on an individual level. Involve and educate family members and the extended community surrounding you is important as well.
ONE LOVE