Tired of Always Wearing the Cape: Why Sickle Cell Warriors Deserve Rest Too

The Invisible Cape We Never Asked For

Let's be real for a minute!

If you're living with sickle cell disease, you've probably heard it all before: "You're so strong." "I don't know how you do it." These comments might seem supportive, but they come with an unspoken expectation—that you'll keep pushing through, keep smiling "through the pain", keep wearing that invisible cape of strength that nobody actually asked for.

For Black sickle cell warriors especially, this burden comes with extra weight. We're already navigating a world that expects us to embody the "Strong Black Woman" or the "John Henry" stereotype—characters who work themselves to exhaustion, sacrifice their wellbeing for others, and never, ever show weakness.

But here's the truth that needs saying: We're tired. Our bodies are tired. Our minds are tired. And we deserve rest—not as a reward for pushing through, but as a basic human need

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The Double Burden: Racial Stereotypes + Chronic Illness

The "Strong Black Woman" and "John Henry" tropes have deep historical roots in American culture. These narratives glorify superhuman strength, endless resilience, and the ability to overcome impossible odds without complaint. They sound inspiring until you realize they're actually toxic expectations that deny basic humanity.

For warriors of color, these racial stereotypes create a double burden:

1. The expectation to be stoic in the face of racism and societal challenges

2. The pressure to "warrior through" the excruciating pain and life-threatening complications of sickle cell disease

As warriors, we often internalize these expectations. We push ourselves to attend work while in pain. We downplay our symptoms to avoid being labeled "difficult patients." We prioritize everyone else's needs above our own. We wear the cape because it's what everyone expects.

The Physical Reality: Why We Can't Keep Pushing

Sickle cell disease isn't just about periodic pain crises. It's a constant, daily battle that affects nearly every system in our bodies:

• Chronic pain that ranges from dull and persistent to acute and unbearable

• Profound fatigue that sleep doesn't fix

• Increased vulnerability to infections

• Organ damage accumulating over time

• Unpredictable crises that can land us in the hospital at any moment

Our bodies are literally working overtime just to perform basic functions. Our blood cells, which should flow smoothly through our vessels, instead become rigid, sticky, and misshapen. They clog blood vessels, restrict oxygen flow, and cause damage throughout our bodies.

The physical reality is this: we literally do not have the capacity to be superheroes. Our bodies are already fighting an invisible war 24/7. Adding the pressure to be "strong" at all times isn't just unreasonable—it's dangerous.

The Mental Toll of Always Being "Strong"

The mental health impact of this constant pressure is rarely discussed but profoundly significant. Research shows that people with sickle cell disease experience rates of anxiety and depression that are 2-3 times higher than the general population. This isn't surprising when you consider:

• The unpredictability of the disease creates constant background anxiety

• Pain and fatigue make it difficult to participate fully in life

• We often hide our suffering to appear "normal" or avoid burdening others

• Medical trauma from repeated hospitalizations and sometimes inadequate pain management

• Navigating a healthcare system that has historically undervalued Black pain

When we buy into the "strong warrior" narrative, we often ignore these mental health impacts. We push down our feelings, deny our needs, and soldier on. But just like our physical resources, our mental and emotional resources are limited—and precious.

Letting Go of John Henry and the Superwoman Cape

So how do we break free from these harmful expectations? How do we give ourselves permission to rest when society, medical professionals, and even our own communities sometimes expect us to keep pushing?

Here are some truths to hold onto:

Rest is not weakness—it's wisdom

The John Henry legend ends with him dying after outworking a steam drill. Is that really the model we want to follow? Choosing rest isn't giving up—it's making the wise decision to sustain yourself for the long haul.

Setting boundaries is self-preservation

Learning to say "no" is a survival skill for sickle cell warriors. Whether it's declining an invitation when you're exhausted or asking for accommodations at work, boundaries protect your limited energy.

Your worth isn't tied to productivity

In a capitalist society that values people based on what they produce, it's revolutionary to assert that you matter simply because you exist. Your worth isn't measured by how much you can work through pain or how little help you need.

Practical Steps for Embracing Rest

Breaking free from these harmful tropes takes practice. Here are some concrete ways to start:

1. Recognize the signs your body needs rest

Learn to identify your personal warning signs before a full crisis hits. Maybe it's a certain quality of fatigue, minor pain in specific locations, or mood changes. The earlier you respond with rest, the better chance you have of preventing a major crisis.

2. Create a rest routine that works for you

Rest looks different for everyone. It might mean:

• Complete bed rest with minimal stimulation

• Gentle stretching or restorative yoga

• Meditation or breath work

• Reading or watching shows that don't require mental energy

• Using heating pads, weighted blankets, or other comfort tools

Experiment to find what truly allows your body and mind to recover.

3. Build your support system

Identify people who understand your need for rest and don't make you feel guilty about it. Be explicit with them about how they can support you—whether that's bringing meals, handling responsibilities when you're down, or simply not expecting you to respond immediately to messages.

4. Practice self-compassion

When the voice in your head starts criticizing you for resting, practice responding with kindness. What would you say to another sickle cell warrior who needed rest? Offer yourself that same compassion.

A New Narrative: Rest as Resistance

What if we started thinking about rest not as giving in to illness, but as a form of resistance against harmful expectations? What if we saw caring for ourselves as a revolutionary act?

For Black sickle cell warriors especially, claiming rest is a way of rejecting centuries of exploitation and dehumanization. It's saying: I matter. My body matters. My peace matters.

This doesn't mean giving up the fight against sickle cell disease. It means fighting smarter, not harder. It means understanding that rest isn't the opposite of strength—it's what makes strength sustainable.

You Deserve Rest. Period.

If you take nothing else from this post, please hear this: You deserve rest not because you've earned it by pushing through pain, but simply because you are human.

You don't need to wear a cape to be valuable.You don't need to be a warrior every minute of every day.You don't need to uphold stereotypes about Black strength and resilience.

What you need—what we all need—is the space to be fully human, with all the vulnerability, need for rest, and interdependence that comes with that.

So today, if you can, take off that cape. Put down that burden of always being strong. Give yourself permission to rest. Your body, mind, and spirit will thank you.

At #ThroughThePain Inc, we're committed to supporting sickle cell warriors in all aspects of their journey, including challenging harmful narratives and promoting genuine self-care. Connect with our community to find others who understand the importance of rest and recovery in the sickle cell experience.