Shaquilla Gordon and Jarvis White open up about how paroxysmal nocturnal hemoglobinuria (PNH) has shaped their relationship. From early uncertainty and lots of Google searches to learning the power of communication, patience, and humor, the couple shares how they support each other through challenges — and what it means to grow together while managing a rare disease.
Read more from Shaquilla in her column, Dark to Hopeful.
Transcript
Jarvis White: Hello, my name is Jarvis White. I’m from Georgia, and I’m the husband of a PNH patient.
Shaquilla Gordon: And hello, my name is Shaquilla Gordon, I’m from Florida. And I am a PNH patient, along with being a PNH patient advocate.
Shaquilla: I feel like there are reservations, naturally, when you’re meeting someone and talking about possibly getting into a relationship with someone. Having PNH was something that I feel compelled to bring up and talk about. That way, I can always give Jarvis that option to say whether or not that’s something he can handle.
Jarvis: In the beginning, I will say Google was my best friend, because as the relationship started, it was a lot of things I didn’t even know about. PNH was something new for me. So, as we talk, it’s like I had to be patient and learn her life situation as days go by. So, I had to be patient with myself and pray, and she had to be open to me, so we can learn each other, so as we can get by daily learning. And I can be more for her.
Shaquilla: From the very beginning, the first conversation we had regarding PNH, his biggest thing was learning. His biggest thing was researching, just to see what it’s about. What is it for himself? The biggest thing was communication and patience, and that was on both ends, because you have to be patient with someone who doesn’t know PNH or doesn’t know that it even existed, to know how they can be there for you.
And then he also had to learn patience in what’s happening with me, and how he can be there for me, and what he needed to do to do his part within the relationship.
Something that took place actually recently. It was a couple of weeks ago. I had gotten sick. My symptoms were like chills and, you know, body aches. I wasn’t feeling well. I wasn’t sure if I came across a bug, flu, COVID, or maybe just having a flare-up.
We looked to find the nearest E.R. We wasn’t familiar with that area too much, so we went into the ER, let them know what my symptoms was, and let them know right up front, I do have a bone marrow disorder or a disease called PNH. What it is, how it’s being treated, and who my local physicians are.
The only thing that they did for me, I would think they would have ran the whole menu of tests and labs, but they just swabbed me for the flu and COVID. I got down for a second, but I had Jarvis with me where we just made jokes and laughed when I was just like, that’s all that they’re going to do? They just do the flu and COVID tests. And those came back negative.
So it’s like, OK, now what? They gave me discharge papers at that moment. And Jarvis said.
Jarvis: I said, we can’t even get a peppermint and nothing?
Shaquilla: No lollipop, no nothing.
Jarvis: Nothing.
Shaquilla: And still left the hospital sick. But what happened in that situation is a common case of a physician not aware that PNH exists, or what it even is, or how to treat it, how to go about dealing with me as a patient. And I didn’t feel like I was fully taken care of in that moment. But we made light of the situation and joked, basically, all the way home.
But we did get up that next day and made it to the emergency room that I’m used to. And that was another instance of, basically, Jarvis learning what happens with the PNH patient when they have a provider who knows the condition and who cares, and then come find out I was just having an episode, a flare-up of my condition.
And Jarvis himself was able to understand why I’m picky about what hospitals I go to or what physicians I see. Just because for PNH couples, it takes two things in a relationship to keep it going, to balance out the PNH condition. It’s strong communication and patience, and that goes both ways.
It’s not just having that communication, passion, and patience for the PNH patient, but for us as PNH patients, that have the communication and patience with someone who is in a relationship and healthy, that’s dealing with the challenges of the PNH patient and the disease itself.
You want to communicate how you’re feeling, you want to communicate what you’re needing in that moment or within the relationship. Dealing with the PNH, so everyone can stay on board, stay on the same page, and manage patience.
