Sickle cell disease can affect every part of your life, so it’s natural you’ll want your friends to understand your condition. Still, it can be difficult to talk to them about what SCD is and how it affects you. We’re here to help with tips on what to say and things to keep in mind.
Tips to Feel Comfortable
Starting the conversation about sickle cell disease can be scary. You don’t want your friends to treat you any differently or not include you in activities. But if they’re true friends, they’ll want to understand and be there for you. Here are some tips to keep in mind:
- You’ve wanted to support your friends when they’ve had problems in their lives, right? They’ll feel the same about you. So, it’s okay to let friends know that you need support. You won’t be a burden to them.
- Remember that having SCD is just one part of who you are. It’s important for your friends to know, just like it’s important for them to know you love basketball or have a younger sibling. Telling your friends about your condition doesn’t mean you can’t talk about the other parts of your life.
- Practicing what you plan to say with a family member or other person who knows about your SCD can make talking to friends feel easier. It gives you a chance to make sure you feel like you’re saying the right things.
What to Tell Your Friends
It can be hard to know where to start when telling your friends about living with SCD. You’ll have to make your own decisions about what you think is important for them to know. However, here are some top things you should consider talking about, from the basics of SCD to how it affects you.
- What it is: Sickle cell disease is a genetic condition where your red blood cells are shaped like crescents or sickles, rather than the usual round shape. This can cause them to get stuck in blood vessels, leading to pain, anemia, and other complications.
- How you get SCD: It’s inherited from your parents, and you need to get one sickle cell gene from each parent to have the disease. You can reassure your friends that it’s not contagious or something you can catch from others.
- Symptoms: SCD can cause pain (called sickle cell crises), fatigue, and sometimes infections or other complications. Your friends should know that the pain can be sudden and severe, and sometimes can last for a long time.
- Treatment: If you feel comfortable, you can tell your friends what treatments you take and that it might mean you have to take medicine regularly or be in the hospital often. If you get a bone marrow transplant or gene therapy, you can explain how this works and that it can cure your SCD.
- Pain episodes: You can describe what happens during a pain crisis and how it might affect you. For example, “Sometimes I experience severe pain that can make it hard for me to do everyday activities.”
- Limitations and needs: Let them know if there are things you might need help with or things you need to avoid. For instance, “Sometimes I need to rest more or might have to cancel plans if I’m not feeling well.”
- How they can help: Like we said, your friends likely want to support you, but they may not know how. Let them know that they can support you by being understanding and patient. If you need to leave activities early or need some rest, they should know that it’s not about them, but about managing your health.
- Where to learn more about SCD: You might find it useful to share reliable resources, like websites or support groups, where they can learn more about SCD. The Sickle Cell Disease Association of America (SCDAA) and similar organizations have good information.
- A bonus fun fact: SCD may not be fun, but there are still some things about it that your friends may find interesting. For example, you can tell them that having one sickle cell gene can make a person less likely to have severe effects from malaria. That’s why sickle cell disease is more common in populations from parts of the world where malaria is more common, like parts of Africa, the Mediterranean, the Middle East, and India.
By sharing what you’re comfortable with and letting them know how they can be supportive, you’ll help your friends understand and be there for you in the best way possible.