Sickle Cell & You
“So many people with sickle cell are very strong and resilient, and we put on a brave face, but this is like one hell of an illness. It's very painful, it's very heavy, and it's taxing mentally. I wish people wouldn't look at us and assume that, oh, it must not be that bad.”
—Shamonica, Living with Sickle Cell
Making Your Voice Heard
Remember that your voice matters—and it’s important to be open and honest with your care team. People with sickle cell may choose to remain silent or be very selective when talking about their disease to avoid potential judgment or misunderstanding. It can be difficult to make your voice heard when experiencing pain and unpredictable complications on a daily basis. But sharing how you feel with your care team can help you get the support you need.
Building a Better Future in Care
Sickle cell disease is an invisible disease.
From the outside, looking at someone, you’d think they were lying. It’s easy to take it at face value and just look and say, well, you look fine.”
Sickle cell disease is an invisible disease. From the outside, looking at someone, you’d think they were lying. It’s easy to take it at face value and just look and say, well, you look fine.”
The Stigma of an Invisible Illness
It has been shown that the stigma associated with sickle cell from both the healthcare community and friends and family can lead to people with sickle cell not actively seeking medical care. This can affect your mental state as well as your body. You may be faced with difficult situations and negative reactions from family, friends, employers, coworkers, peers, doctors, and community members. There may be times where others may discredit your pain and accuse you of exaggerating illness and symptoms. This can create negative social experiences and cause feelings of anger, shame, anxiety, isolation, and sadness.
Know that these feelings are valid and that your voice is important. Speaking with a social worker, mental health professional, a member of your religious community as well as your care team can help you advocate for better care and get the conversation started.
Psychological Impacts of Sickle Cell
Opening up about the impact sickle cell has on your personal life, work and day-to-day can spark a bigger conversation for change. It may help to keep a diary or use a diary app to keep track of pain or your experiences with sickle cell care.