When you grow up with an undiagnosed disability to you, not knowing the truth about yourself, you build your identity around fragments. I spent years building up the wrong version of myself. I told myself things trying to make sense of what no one explained – in school my teachers and peers thought I was slow. No one should have to deal with hidden disabilities.
At home, it was oh, it's just 'Ilana!'
I didn't believe those things – I believed there must have been a reason for my inability to learn. I had, however, rightly convinced myself it was others' inability to look at what I had, their fault to ignore what I was dealing with and why. On my part I had no understanding as to why I could look at things and not connect with those things, or fail to connect with people or words, even though I was talking and having a direct conversation with them. The Truth about invisible disabilities is that you're on your own.
Not connecting with words and bumping into things, I just put down to being clumsy, I didn't think about why nothing was connecting. Without a diagnosis, there was everything to see, but nothing to question. But all of those thoughts ate into my life and eventually became a part of me, how I saw myself. Without knowing anything, I continued to internalise the wrong message that there wasn't anything wrong with me mentally, and that my disability didn't extended beyond the physical? I was embarrassed, so I continually pulled away rather than risk being seen too closely. I learned to stay small, to protect myself from continual judgments, others' opinions. My life was a lie. I lived a 'lie.'
But there is grief in all of that. I didn't grieve because I didn't know I needed to. You grieve for what could have been different, easier. Now decades later I get it. I didn't grieve for putting my trust in those close to me – I didn't grieve for thinking they had my back; I also didn't grieve for the identity I never got to claim until much later. Now, being bolder, each personal truth I speak gives back a piece of 'me'. Not everything will sit comfortably for or with others, but each of us must sit with our truth. This is mine. I was constantly being judged for being slow and failing to learn.
Now each moment of understanding continues to soften the parts of me that lived in the unknown. Coming to terms with late disability diagnoses is a work-in-progress. How I got to learn about my diagnoses, well I'm still not over those.
