The Sickle Cell Disease Patient Journey - Episode 6

Pain Management With Sickle Cell Disease

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Cassandra Trimnell, a patient advocate, narrates her experience in dealing with the physical and emotional pain of sickle cell disease and finding the beauty in living with the disorder.

Cassandra Trimnell: I’m huge on analogies. The pain comes with suffering, and that suffering feels like being locked outside in the middle of a blizzard. The cold slowly seeps in, and you try to make yourself comfortable in that cold, but it gets harder and harder to make yourself comfortable in it. The battle is waiting it out. The battle is waiting for warmth or waiting for pain relief, so you just sit and try to make yourself as comfortable as possible. You try everything you can. You put your hands around yourself, you try to build up body heat, and you use whatever body defense you have to make the situation OK. But the situation is just so long. It’s never-ending, so you just succumb to that pain or that coldness. That’s how I like to describe the suffering with it. They’re coupled together. They’re 2 different experiences, but both come into play. Luckily, I don’t deal with that on a daily basis, but it’s very traumatic and very real, so I speak on it just to make sure people understand the gravity of this pain.

In mentally dealing with sickle cell, I acknowledge that it’s there, but it’s not the be-all and end-all. I still have the rest of my life to live. In middle school, I realized the severity of having sickle cell disease when I was doing a science project and I wanted to research sickle cell. I found out the life expectancy was around 42 or 46, and it hit me like a ton of bricks. I was just like, “What?” I took that statistic and put it aside, and I told myself, “That’s not for me.” That’s how I live my life with sickle cell disease in my line of work. Sickle cell disease is not pretty. We talk about a lot of horrible experiences that people go through, including myself, but you have to take yourself out of it and try to reason with yourself. I believe I was born with sickle cell disease so that I can do the work that I’m doing. That’s how I reason with it. As I said, I acknowledge it. It’s a battle. Most days I’m OK with living with sickle cell disease; some days I’m not. It really is a battle. It’s trying to stay strong, keep battling, and finding the beauty in all of it.

Ifeyinwa Osunkwo, MD, MPH: Wow. Cassandra, I’ve been involved in treating sickle cell disease for almost 30 years, and I don’t know if I’ve ever heard anybody express as eloquently as you just did about this pain and suffering. I really want our audience to hear that loud and clear. Pain is 1 thing. It’s worse than labor. All you women out there who’ve had babies, can I get an amen? Labor is not pretty. Even with an epidural, it sucks, but at least you get a break. You get your contractions, then you get a break, then you get another contraction, then you get a break, and then the baby comes and it’s all over. But in sickle cell disease, it’s there and it’s never-ending.

The other thing you mentioned that I want to highlight is the suffering. The picture of being out in the blizzard, they lock the door, and you’re stuck out in the cold and gradually freezing to death, in addition to having this unremitting pain that is worse than labor. Wow. If anybody has any questions about whether sickle cell disease affects people’s quality of life, that’s it right there. Between what Cassandra said, what Jamaal expressed, and what Sherry expressed, that’s sickle cell disease. It affects your quality of life profoundly.

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Transcript Edited for Clarity