Awareness Isn’t Care

One of the first blog pieces I ever wrote was about my experience being diagnosed with Borderline Personality Disorder. I wrote it while working in a space that invited lived experience, especially when it could be shaped into something others might learn from. At the time, I felt proud of it. I still do. It felt like telling the truth in a way that mattered, like naming something that had long been unspoken and believing it might help shift how people saw us. I also believed, then, that telling my story might actually change something.

But the truth is, we aren’t. Not in the ways that matter most.

Year after year, awareness campaigns come and go. Mental Health Awareness Month. BPD Awareness Month. Graphics, hashtags, curated stories meant to be hopeful and easy to hold. And then the month ends, and nothing really changes. The stigma follows us into therapy rooms, hospitals, peer spaces, and staff meetings. It shows up in the same language: “manipulative,” “too much,” “non-compliant.” The same words used on me as a teenager are still being used on people like me now.

Within Mad liberation and disability justice, we have language for this. Ableism and sanism shape how our experiences are interpreted and responded to. When our pain is complex or inconvenient, it gets pathologized. When our needs disrupt expectations, we are treated as the problem.

Part of what makes this especially difficult to hold is that my Borderline Personality Disorder diagnosis was not even accurate. It was a misdiagnosis, and a harmful one. It shaped how I was treated, how I was spoken to, what care I was offered, and what was withheld. It also lived in my body, in the tightness of second-guessing myself, in the pause before I spoke, in the way I learned to scan for how I might be perceived instead of trusting what I was actually feeling. Even now, that label can follow me into spaces and change how I am understood before I have said a single word.

What has taken me time to understand is this: telling my story does not change how people see Borderline Personality Disorder. Sometimes it changes how they see me, but even that is conditional. It often only holds as long as I stay within what someone else considers “well.”

Because once that label is known, it becomes a lens. If I speak up, I am difficult. If I cry, I am unstable. If I advocate, I am angry. My most human moments get filtered through assumptions that were never built to hold me.

I have grown so much since I first received that diagnosis. I have done the kind of work that is layered and nonlinear. I have moved through shame, rebuilt myself, lost ground, and found my way back again. I have learned my patterns, my needs, and my limits. I have practiced gentleness alongside boundaries. I have become someone I am proud of.

And still, I no longer identify with the labels that were placed on me. Not because I am ashamed, but because I refuse to be defined by systems that never saw me clearly to begin with. Systems that pathologized my trauma, punished my survival strategies, and only made space for me when I was easier to hold.

Many of us live in that in-between space, between wanting to be seen and not wanting to be reduced, between wanting to share and needing to protect ourselves, between pride in our survival and the exhaustion of having to prove our humanity.

I am not here to make my experiences more palatable in order to be treated with care. And awareness, on its own, is not enough. Not if it only exists for a month. Not if the language does not change. Not if compassion disappears the moment we become inconvenient.

We need more than awareness. We need change. We need to stop being treated like walking diagnoses. We need providers who do not flinch at intensity. We need care that honors whole people, not just symptoms.

Until then, I will keep showing up for my community, not to convince anyone, but because we deserve to be met with tenderness and truth.

We are not the problem.

The way we are treated is.

And I am still here. Not because the system worked, but because I found ways to heal in spite of it.