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Patrice: Sickle cell is known to be an invisible disease. And in the story of sickle cell, caregivers are the invisible heroes.

Making time for self-care

Marqué: When you are a caregiver, we don’t take a moment to breathe. Because we can’t. 

Keonsha: Self-care for me, if I, if I left it to simply finding time for self-care, I would never find time. So, I have to schedule time to do what I enjoy. But I don’t—I don’t see self-care as, you know, going to get my nails done or meditating or things like that. I feel as if my self-care is doing something that I, that fulfills me, that I feel like I’m not always running and doing things that I have to do, but I’m doing something that I actually want to do and that I enjoy.

Elle: When you said that, it made me think about what self-care has evolved to me because I do a lot of advocacy. I love advocacy, but it’s no longer my place of self-care. Now I find peace in the pause, and just kind of stealing away and being quiet and just having alone time. So, for me, I try to get up early when everybody is sleeping just to spend time with myself. 

And so that’s what self-care has become to me. Like you, it’s not necessarily going somewhere. It’s finding how can I create this place of calmness where I’m at? Just calming down, maybe taking some deep breaths and just focusing on what is here, what is now, and feeling the blessings of what’s around. 

Patrice: I’ve learned that I can prioritize Patrice now. I can remember that I’m married and that I have a husband. I can remember that I like to go to the movies, you know. It’s like you kind of forget those things. Your world becomes centered, you know, on, on, on this thing. And so it’s, and it’s not always going somewhere or having to do something. It’s just being.

Supporting your emotional well-being

Emmy: Sometimes we have to step back and say, I need help, or I need time, or I need grace. And I should be okay.

Keonsha: So I’ll definitely say that being a caregiver is, is hard. Sometimes I just have to let myself cry, and Marqué can, can attest that I do cry. I have to let my feelings out.

Marqué: Oh, she will cry.  

Keonsha: But I really do have to talk things through. I try not to hold my feelings in. And so if I get that opportunity, I might be in the doctor’s office; I might be on the phone with my mom; I might be talking to, you know, my daughter. But I really have to process through those different feelings by allowing myself to feel them. 

None of my feelings are invalid, and then just kind of working through that. Where did it come from? Was it fear? Is there something that I just don’t know what I need to learn more about? How do I prevent this from happening again? And so, I try not to suppress the way I feel and really need the opportunity to talk them through. 

Patrice: I love the “My feelings are not invalid.” I absolutely love that because I think that is a huge part of dealing with what we go through. And the flip side for me has been forgiveness. I have to forgive myself all of the guilt that I felt. It can be a, a nonstop cycle.

Emmy: This is—this actually is a hard topic for me because I felt like I was mentally sound, if she was mentally sound. So, I got her help really early—but more as a coping mechanism because her personality is more A type. But I would see it turn upside down when she got sick.

She started counseling early. But then, now she flipped it back to me and she said, “I need you to be okay because if you’re not okay, I’m not okay.”

Marqué: Boundaries, I think, was the very first lesson for me, and that, um, set a support level that I think everyone needs, even when you think you don’t. There’s no way around it. And it’s, it’s essential to every, every area in every relationship.

Building your community

Keonsha: I feel it is extremely important to have as many connections as caregivers as we can, because every person’s lived experience with sickle cell is different.

Emmy: You know, meeting Elle helped because I felt alone so often, and it just makes it harder when you feel like you’re the only one all the time in the room. So, then I started to talk to the social worker or, just reaching out in spaces that I would not normally do it—helped me to build a better community for myself and my family.

Keonsha: It was very, very helpful for me to get involved, go seek information from organizations, find other people. You know, I was able to meet Marqué and just other mothers who were caring for children with sickle cell disease, because I needed to know that there was hope.

I needed to see people. I needed to hear from people. I needed to, you know, have that camaraderie and relationship with other people that were living it.

Patrice: If you’re not a caregiver of a person living with sickle cell, it is very, very hard to get it—to really understand it. It makes it even more important to create that community because those who don’t get it, you got to move on. You can’t hold them hostage. You can’t be upset. It just is what it is. They don’t get it, but you still need that support.

So, you move on and you gain it where you can gain it. I love my community. It’s just, it’s so helpful. My goddaughter calls them “fr-amily.” You know, they are there at just a moment’s notice. I can call at 2:00 AM. It doesn’t matter. And so that’s who’s become our community.

Elle: So, that’s just it. There is a gift that’s given to us. Yes, there are challenging things in our community, but it’s given us an extended family, so to speak, by being able to reach out to other people who are not blood relatives. But we’re connected in a way where there are other families, like all of you, who truly understand what we go through.

Emmy: Walking with a Warrior is not easy, but the most impactful thing is to hear each other. Caregivers should hear each other and give them the safe space to be able to express how they actually feel.