My 11-year-old son’s race and ethnicity have impacted his ability to receive treatment for his cystic fibrosis, especially in the early years of his life. Khaleb’s treatment has been delayed because I have to take time to explain, “Yes, he really does have cystic fibrosis.”
We don't get that immediately (anymore) because when we go in to see a doctor who is new, I say, “If you don't understand and if you don't believe that African Americans can have cystic fibrosis, please excuse yourself because I don't have time to teach you. You should have learned this already.” Like, I can't waste time teaching you right now. We can talk later. We can exchange emails, but right now I need somebody who is not going to give me the third degree about whether my son has cystic fibrosis when I'm here for another reason.
I have become more vocal as we have gone through our journey. I can more easily identify doctors who are going to give me pushback.
There was a point when we were going to the ER quite often. Khaleb was going through a stage where he was getting sick often. As soon as the ER doctors saw his name, whoever was on call with the pulmonology department came down and helped us. It was because I would get frustrated with the regular ER doctors. I would have to talk myself down because I didn't want to be labeled “the angry Black mom.” That would further delay him from getting any treatment. I was trying to find that balance of being an advocate for my child, while at the same time getting the help that my child needed.
But when doctors say, “Well, Black people don't get cystic fibrosis,” I need them to take that ignorance away from us because obviously Black people do get cystic fibrosis. I need someone who's going to be able to say, “OK, you have been diagnosed with cystic fibrosis. We can keep that in mind as we go forward and see what we need to do to treat you for what you came in here today.”
My advice to other parents: Use your voice. If something doesn't feel right to you, speak up.
If you don't understand something that a doctor has said to you, make them break it down until you understand. They don't know your kid like you know your kid.
Use your voice to speak for your child, but also listen to your child. You need to find a doctor who is going to work with you; keep on advocating until they start listening to you. If you are at a doctor’s office where they're not listening, try to find a new place. Someone will eventually start listening and then you can get your kid what you need. But you have got to find your voice. Because your child can't speak for himself until you equip him with those skills. If he sees you speaking up for him, then he is going to speak up for himself.
From the moment Khaleb was able to comprehend, I have been telling him that he has CF. This is what you need to do. These are your medications. These are your treatments.
So, even today -- and for as long as I can remember -- when we go into the doctor’s office, I have the doctor speak directly to Khaleb because he is the one who has cystic fibrosis.
I'm just his caretaker. I don't know how he feels. I don't know how things are progressing. I can tell you what I see. I can tell you what I observe. I can tell you what I've done to help him, but I can't tell you what it is like to have cystic fibrosis.
So, I tell the doctor that you need to speak to him. I have Khaleb -- even though he is only 11 years old -- talk to and answer the doctor’s questions.
I have hope that the day will come where there will be a family of color who won't have to take 10 minutes to explain to a doctor, “Yes, my child does have cystic fibrosis.” I'm hoping that with the work that the Cystic Fibrosis Foundation and others are doing on correcting health disparities, those experiences for people of color will soon be few and far between.
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