#CALL ME THE REIGN THE WAY IM DOWN BAD FOR ARLINE

[sillycyan]

ARLINE. TIRED IN THE MORNING. WHITE TANK TOP. ONE OF THE STRAPS KINDA OFF OFF THE SHOULDER YK THE.. YEAAHHHH

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Accessibility Is More Than Ramps: Living with Invisible Disabilities

On Monday, I shared thoughts on the lived experience of disability. I unexpectedly received messages of gratitude from readers across the board. There is so much quiet hurt in the world—people feeling misunderstood, or navigating conversations about illness without care or compassion.

Yesterday, I had a conversation with a rehabilitation doctor. He asked whether I find it difficult to communicate what I go through as someone with an invisible disability. I explained that it’s not so much the ability to articulate it—that part, I’ve honed. The difficulty lies in being understood. People don’t always have the shared experience needed to grasp what the words truly mean. For example, chronic fatigue isn’t simply “being tired.” Tiredness can be resolved by rest. Chronic fatigue is unpredictable, invasive, and unrelenting.

I told him: the only way to bridge the gap is to shine a light on what invisible disabilities are, to inform the broader public about the challenges we face, and to make it part of our social conversation. Once we’ve done that—then ask me again if it’s hard to communicate what I go through.

More information and more visibility are urgently needed. And I’m more than willing to provide it. Today, I want to start by exploring what often goes unseen—what’s misunderstood, overlooked, or dismissed. Invisible disabilities can shape every aspect of a person’s life and may prevent full access to the world around them.

When people think of accessibility, they often picture ramps, lifts, or wide doorways. Those are vital—but accessibility goes far beyond bricks and concrete. For those of us living with invisible disabilities, access might mean flexibility with time. It might mean freedom from harsh lighting, loud noise, or overstimulating environments. It might mean understanding that energy is not just limited but also unpredictable, and that “pushing through” can have lasting consequences.

Access means being able to exist, participate, and belong—without having to constantly justify your needs.

In modern life, we’ve grown used to explaining how we feel, defending our thoughts, and using words to build bridges of understanding. But here’s the golden rule of communication: the message must be received and understood by the other person. If I tell you my dog has blue hair, but you don’t know what “blue” means, you’ll miss the point. So when I say that fatigue is a debilitating part of my condition, someone might hear “fatigue = tired,” and think, “I get tired too, but I push through and go to bed early—why can’t you do the same?”

That’s where miscommunication starts. And once misunderstanding sets in, it often leads to misplaced accountability and judgment.

We live in a culture that values performance and productivity. We hold people accountable for what they do—which, in many cases, is entirely reasonable. But what happens when someone is judged by standards shaped by assumptions? When a person is scrutinized for not working, simply because their disability isn’t visible? Or asked to explain why they can function one day and not the next?

The truth is, society isn’t designed with invisible challenges in mind. If your condition isn’t visible, many assume you’re fine. But this assumption erases the labor it takes just to show up. It dismisses the brain fog, the pain, the anxiety—and the constant effort to mask it all in order to be seen as “normal.”

And that masking itself is exhausting. The pressure to be believed, to seem capable, to avoid suspicion—it all adds to the weight we carry. It fuels stress, deepens isolation, and increases the distance between us and the world.

So how do we begin to make space for invisible disabilities? How do we make society more accessible?

It begins with a shift—from suspicion to trust. That’s not a small ask. In today’s world, it’s a paradigm shift. But it’s not about special treatment. It’s about equal footing. It’s about creating spaces where people don’t have to fight to be believed before they’re offered support.

How do we spark that shift? We start by listening. Without judgment. With open hearts. With a willingness to be wrong and to grow. We start by saying, “Even if I haven’t lived it, I believe you.” We start by giving people what they need to thrive—and valuing them for who they are, not for how much they produce.

Not everyone’s experience looks the same. But every voice deserves to be heard. Let’s listen to those voices. And let’s make space—for all of us.

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Source: Accessibility Is More Than Ramps: Living with Invisible Disabilities