“Understanding SCD: Insights for Those Without the Condition”

 

For Non SCD individuals

First off let's understand before we Land 

Sickle Cell Disease (SCD) is a complex condition that affects millions of people worldwide. While you may not personally experience the challenges of living with SCD, you can play a crucial role in supporting and understanding those who do. This blog post aims to provide you with valuable insights, practical Dos and Don'ts, and foster empathy, creating a friendly and professional approach to supporting individuals with SCD.

Let's start by exploring the basics of SCD. It's a genetic blood disorder that causes red blood cells to become rigid and crescent-shaped, resulting in pain, fatigue, and a range of complications. By familiarizing yourself with the symptoms, triggers, and potential complications of SCD, you'll gain a better understanding of the experiences individuals with SCD face.

1. Do you need to show Empathy and Compassion?

Living with SCD can be both physically and emotionally challenging. One of the most powerful ways to support someone with SCD is by showing empathy and compassion, and sometimes by not doing that, well, when I say not doing that, I mean a lot of us excessively show empathy the wrong way, placing our decisions based on their genetic makeup is just another harsh way to care, from your point of view, well you might think you're being nice, but that's just an indirect insult 

Take the time to actively listen and validate their feelings. This creates a safe space where they can express themselves and feel understood.

2 Educate Others:

As a friendly advocate, you can contribute to raising awareness and debunking myths surrounding SCD. Share accurate information through conversations, social media, or by participating in events. By educating others about SCD, you help build a supportive community that understands and supports individuals with this condition.

3. Respect Boundaries and Limitations:

Recognize that individuals with SCD may have unique needs and limitations due to their health condition. It's essential to respect their boundaries and avoid pressuring them into activities that could trigger a pain crisis or worsen their symptoms. You might be thinking “isn't this just contradicting what I said earlier? Well no 

There's a difference between you knowing thuer limitations and you pushing it. Support their decisions and be understanding when they prioritize self-care.

4. Be Mindful of Environmental Factors:

SCD is influenced by environmental conditions such as extreme temperatures, very hot water or very cols water, it's not just cold water as some of us think, when there's a spike in temperature, it triggers painful episodes. When planning activities or events, it's important to consider these factors. Creating inclusive spaces that minimize potential triggers or discomfort for individuals with SCD demonstrates your friendly and professional support.

5. Offer Practical Support:

Practical gestures of support can make a significant impact on the lives of individuals with SCD. Consider offering rides to medical appointments, providing nutritious meals during hospital stays, or assisting with daily tasks during pain crises. These small acts of kindness go a long way in demonstrating your friendly and professional support.

Dos:

- Do educate yourself about SCD to gain a deeper understanding of the challenges faced by individuals with this condition.

- Do show empathy, compassion, and active listening when engaging with individuals affected by SCD.

- Do advocate for better resources, funding, and research for SCD to improve the lives of those affected.

- Do promote awareness and participate in campaigns and events that aim to increase understanding and support for SCD.

Don'ts:

- Don't make assumptions or stigmatize individuals with SCD based on their condition. (This should be the most important “Dont” )

- Don't underestimate the impact of SCD on someone's life. Acknowledge their challenges and validate their experiences.

- Don't dismiss their pain or tell them to "just tough it out." omo 😂Understand that SCD-related pain requires proper medical attention and support.

Thank you for reading