Sickle cell disease can be both physically and emotionally exhausting, and it can often put those living with it at odds with those around them. While the disease itself is out of your control, what you say and do (or don’t) can definitely have an impact on your sickle cell friend or family member. Here are five things you should never say to someone with sickle cell disease.
1) Don’t ask what I’m doing about my health
There are a number of stereotypes about people with sickle cell disease. It is important not to make assumptions about how any person, let alone someone living with sickle cell disease, has chosen to manage their health. Asking them what they are doing about their health can be seen as accusatory and judgmental. It makes it sound like you think they don’t have control over their situation, or worse yet that they aren’t healthy enough.
Sickle cell disease is an inherited blood disorder in which red blood cells change shape from a normal round shape into a rigid, sticky sickle shape. The cells become sticky because they contain hemoglobin S (HbS), instead of hemoglobin A (HbA). This defect causes red blood cells to break down prematurely and die sooner than normal red blood cells. The shortened lifespan of these cells causes anemia—which means there are fewer oxygen-carrying red blood cells in your body than normal.
2) The best way to help is being a great friend
If you have a friend or family member who has been diagnosed with sickle cell disease, there are many ways that you can offer your support. One of these is by learning more about sickle cell and how it affects individuals who live with it. Learning about disease including some common misconceptions and stigmas that surround it can help both of you develop a better understanding of what your loved one is going through. Below are five things that you should never say to someone with sickle cell disease
Don’t worry, I’m sure you’ll be fine. This may seem like an encouraging statement, but it isn’t true for everyone. While sickle cell disease may not be life-threatening in most cases, there are still serious risks involved and anyone living with it could suffer from complications such as stroke or kidney failure if they don’t take care of themselves properly.
Why don’t you just take painkillers? They work for me! There are painkillers available for people living with sickle cell disease; however, they do not work well for everyone because no two cases of SCD are exactly alike.
3) The best way to support me is by showing kindness
It’s amazing how kind people can be when they see someone in pain. That doesn’t mean that every time a person is suffering, you should say something. There are some things we wish people knew, but often people say insensitive things without even knowing it.
Here are some common blunders people make when talking to someone with sickle cell disease and some better alternatives. Sickle cell disease is an inherited blood disorder characterized by abnormal red blood cells (RBCs). These cells have an abnormally shaped sickle or crescent-shaped center. The irregular shape causes them to become sticky and clump together as they pass through small blood vessels. This makes it difficult for enough oxygen to reach body tissues.
4) Making jokes at my expense isn’t funny, it’s hurtful
It’s important for people living with sickle cell disease and their loved ones to know that joking about it isn’t funny. Humor is often a way of coping, but while making light of a serious condition may make some laugh in the moment, it can cause tremendous stress later on. People struggling to manage their disease don’t need your comments or jokes, they need your support and understanding.
They deserve you treating them like you would anyone else who has something serious going on in their life. The next time you feel compelled to crack a joke at someone’s expense, think twice. Is what you’re saying really worth putting someone through? Is there another way to say what you want without using hurtful words? If so, choose those words instead.
5) It doesn’t take much effort to be nice
all it takes is awareness. So next time you run into someone who has sickle cell disease, these are some things you should absolutely never say. Sickle cell anemia and other related conditions affect millions of people in North America alone.
Having a conversation about it is really not that complicated, and there are plenty of resources out there if you’re interested in learning more but before even trying to start that conversation, try thinking about what’s going on inside your brain.
Whether you know it or not, something goes through your head at first glance when you meet a person who has one of these conditions; while it might be harmless, it can also be hurtful without realizing. Remember that being considerate and aware go a long way: being nice isn’t exactly difficult!