Sick Cells interviewed Gladys, an SCD warrior and dedicated advocate, who reflected on the meaningful support she received from her palliative care team while managing sickle cell. In her interview, she highlights the value of compassionate, patient-centered care and shares heartfelt encouragement for other warriors, caregivers, and advocates.
“ I have to give hats off to my doctor and my palliative care team. When I get ready to go to the hospital, I could call them, we have a system. We got red, yellow, and green. Green zone means I’m good and pain level is under control. Yellow zone means I’m not feeling my best and that the pain is above my normal tolerance level so I may need to do some extra precaution measures to keep the pain from going into the red. Red zone means I have done all I can do on my own and the pain is unbearable so now I’m heading to the hospital for additional help. I am very grateful and knowing that I’m highly blessed, because not everybody has that same care.”
“Oh yes, most definitely. If you have a palliative care, they’re just like your patient advocate for you. I mean, not only that, they do social work. Like I said, they’ve been there for my medication when I had issues trying to get my prescriptions refilled, or even if the pharmacy don’t have it, they’ve been on the phone calling to find out where I could get my medication from. And so, I’m just grateful, yes, if you have a palliative care and you have that opportunity to get connected to one, please do, because they will be able to give you information that you might not know about.”
“Stay strong. Know that you’re not in it by yourself. Because a lot of times we feel isolated, because sickle cell is an isolating disease. And if you can, incorporate yourself with something that you love that you can do. And I know some people they, write in they bed, so they on the video or whatever. Find a good book, something that’s going to build you up. And when I say that, I mean, you have your yes people that goes along whatever you say. No, you need somebody that’s really going to be there to support you, even in the tough times, that will sit at the hospital with you sometimes. I’ve been at the hospital by myself on my birthday and I thank God for the nurses and staff that brought me balloons. It’s a happy birthday, but it’s still a lonely time. And then, for the ones that are caregivers, please make sure you take care of yourself too. We appreciate you taking care of us, but if you don’t take care of yourself, then it tends to show in how you take care of others. So please take care of yourself first. And for the ones that are on the outside looking in, show a little grace and little mercy. Just because we don’t look like we sick or look like we hurting, or we not showing it on our faces does not mean that we’re not going through. And a lot of times people like to judge us from what we look like and just because they don’t understand the disease, it’s not just the sticking of the blood, but there’s a lot of other things that’s happening within our bodies and we just ask for compassion. And that’s the thing is, it’s just have compassion. If we show compassion one to another, then this world will be so much better to live in.”
