Patient advocate, Cassandra Trimnell, talks about her experience of being a mother with sickle cell disease.
Ifeyinwa Osunkwo, MD, MPH: Cassandra, how has sickle cell disease impacted your quality of life? What made you become a sickle cell advocate?
Cassandra Trimnell: Just to provide a little background, I’m a mother, a wife, I’m self-employed, and I live with sickle cell type SS, which is the most severe type. It really is a juggling act. Some days are great; some days are not. Fatigue has been something that has been huge for me day to day. I wake up tired. I’m already tired for tomorrow. To me, fatigue feels like having 25-pound sandbags on your arm or limbs. A task as simple as picking up a pencil or getting up for a drink of water is huge. It’s a big task that requires a lot of energy. That’s what I battle with. I also battle with chronic pain. This is actually new to me. It took a lot of talking to myself to acknowledge that I do deal with chronic pain. I’m normally that person who says, “Oh, I don’t deal with pain as much, or on a daily basis.” But more recently, I realized that I do. I’ve been tracking my pain, and I realized that I have pain on a daily basis that really goes unacknowledged. That’s something I’m dealing with as well.
With my chronic pain, I have pains in my joints predominantly. That coupled with fatigue is quite a combination that works against you. If I’m having pain in my shoulder, and my 6-year-old wakes up in the morning and runs to me for a hug, lifting my shoulder is hard and painful. Just giving my daughter a hug is a task. That’s something that should be so easy and effortless. It should be paired only with love. But it’s love, pain, and fatigue all combined in 1 experience. That’s how I move through life.
Luckily, I don’t have too many acute severe pain crises, but I like to provide context to that pain because it’s important and always underestimated. Pain is subjective, but I like to provide context. Everyone knows that, known to man, child labor is the most painful experience ever. You know it even if you’re not a mother. It’s common knowledge. When I was in labor and having a child, I quickly found that it was a lot easier than going through a sickle cell pain crisis. The hardest part for me is the continuity of that severe pain. There are no breaks. With child labor, you get breaks to recoup and regain strength. You can work on your breathing. You figure out and muster up [tolerance for] all that you have to go through during the next bout of pain. Whereas sickle cell, it’s just 100% pain the entire time. There’s no letup until you get pain medication.
Ifeyinwa Osunkwo, MD, MPH: Thank you very much for watching this HCPLive® Cure Connections®. If you enjoyed the program, please subscribe to our e-newsletter to receive upcoming programs and other great content right in your in-box.
Transcript Edited for Clarity