Happy New Year, everyone!

It’s been a while since I last hit “publish” on this blog. Wayyy longer than I intended. The silence hasn’t been from a lack of things to say, but rather from the sheer weight of living through them. Life has been moving fast, and as much as I’ve wanted to share the updates, I’ve had to prioritize the very thing I advocate for: pacing.

I’m back now, but I’m coming back to a conversation that has been stuck in my head lately, just rattling around and, honestly, messing with me.

The Weight On My Chest

Someone close to me said something recently that has been stuck in my head, just rattling around and, honestly, bugging with me.

They were talking about how much is being done for me—how the support is there, the resources are there—and that “all” I literally have to do is stay healthy and alive.

In my head, I was just like, “I know. I know.” But there’s a sting in that word: all. Like staying alive with Sickle Cell is some passive hobby. Like I’m just sitting around while the world does the heavy lifting. But being constantly tired, navigating the “back and forth” of hospital runs, and managing pain that never truly sleeps?

That isn’t easy. It’s a full-time job.

I was talking to a few people in my tribe who actually get the struggle and journey, and they were just as frustrated. They see the “in-between” moments that everyone else misses—the physical drain of just existing and the mental toll of the constant maintenance.

The Great Disconnect

This interaction highlighted the “Great Disconnect” that happens in almost every Warrior’s family.

There is this massive misunderstanding between those who provide support and those who have to survive the condition. Parents, siblings, and extended family often see the “safety net”—the meds, the food, the bills paid—and they think that because the tools are there, the struggle is over. They mistake provision for management.

They see the resources and think the logic is simple: “We gave you the support, so why are you still struggling?” What they don’t see is the invisible labor. They don’t see the mental discipline it takes to “pace” yourself every single hour so you don’t hit wall after wall. They think that because they’ve built a safety net, we aren’t still walking a tightrope every single day.

The Pressure of the “Burden”

But there is an even deeper layer to this pressure. While being supported, we are also under this intense, self imposed clock to become completely self-supported and self-sufficient.

Even when people provide for you out of love, there is a crushing weight that comes with it: the pressure of feeling like a burden. You feel like you are constantly in debt to the people keeping you afloat. So, while you are fighting a cellular war inside your body, you are also frantically trying to build a career, a foundation, and a life that proves you don’t “need” the help anymore.

It’s an exhausting paradox. You are pushed to be independent, yet your body forces a level of dependence that is out of your control. Trying to achieve self-sufficiency while managing a chronic illness is an additional layer of stress that “healthy” people rarely have to calculate.

More Than Just Surviving

In many families, there’s a quiet, unspoken judgment: if you aren’t “thriving” while being supported, you’re somehow not trying hard enough. They see the “everything” they do for us, but they forget that we are the ones who have to endure the “everything” the disease does to us.

I am deeply grateful for the support I have. I know I’m blessed to have people who show up and provide. But providing the means is one thing; surviving the condition is another.

This is exactly why the work we do at Raremark Foundation is so vital. If the people in our own living rooms can oversimplify the struggle, how can we expect the world to understand?

We aren’t just “staying alive.” We are working, fighting, and navigating a complex internal war that no amount of external provision can pause.

“Staying healthy” isn’t a favor we are doing for our families. It’s the hardest work we’ll ever do.