SCDhealthhub

1. Not all sickle cell patients look the same

Health professionals may often say, “You don’t look like a sickle cell patient” if the individual doesn’t fit into their preconceived notion of what a sickle cell patient looks like. Growing up, I encountered countless people including health personnels who made this remark to me.

Although certain features are associated with sickle cell, including thin extremities, jaundice, and abdominal swelling, they are not universally present among warriors. People with sickle cell come in various sizes and heights; they can be obese or slim, tall or short. The absence of certain physical characteristics doesn’t necessarily mean a patient’s condition is less severe.

In addition, it’s important to recognize that sickle cell disease isn’t always visible. In many cases, sickle cell patients look just like anyone else and can’t be identified based solely on appearance.

2. A patient’s pain is valid

Another frustrating statement patients often hear is, “If you were really in pain, you wouldn’t be using your phone. You must be pretending.”

These health professionals fail to acknowledge that individuals living with sickle cell disease have generally been managing it for years; it’s natural to seek ways to cope with the pain. Patients may use their phones, watch movies, listen to music, use social media, or get a massage as a distraction. Engaging in these activities doesn’t invalidate or eliminate their pain. It only helps them to cope and it doesn’t always work. Regardless, expecting someone in pain to appear or behave a certain way is unjust. Each person’s pain journey is unique, and their chosen methods for coping and finding respite should be respected rather than judged.

Health professionals should also refrain from making cold remarks like, “You should be used to the pain by now.” Expecting patients to get accustomed to their pain is insensitive and unrealistic, irrespective of how long they’ve been living with it.

3. Sickle cell is not the patient’s fault

Unfortunately, many healthcare professionals make the mistake of blaming warriors for their crises. I have personally encountered this many times.

The sickling process is a self-enabling cycle driven by external and internal triggers, which are not always within a patient’s control. A crisis can still occur, even if someone takes every precaution and adheres to proper measures. Therefore, it’s unacceptable to attribute every sickle cell crisis to a patient’s actions or choices.

In conclusion, healthcare professionals need to educate themselves about sickle cell disease, show empathy, and approach sickle cell patients with greater understanding. Harmful statements and assumptions can diminish quality of care and harm the mental well-being of sickle cell warriors.