Identity: Being denied access to my diagnosis has taken its toll

Hey, Lovelies.

I have this repeating question in my mind.

Do you know who you are?

“Yea, of course,” you might think to yourself.

” Yea,” I tell myself, “I’m just me,” but who is that, really?

I have been telling myself that I am on a journey of self-discovery, but if I’m honest, I don’t really know what that looks like or how to even begin.

It’s something that has always bothered me from a very early age.

The whole “lack of self” thing. It feels like I have been going through an Identity crisis like a mid-life crisis since about age four. At that time, it was like I was being pressured to just “be better.”

Like nothing I did was ever right.

Me, being myself wasn’t good enough, and I needed to be changed.

That is a lot of pressure for a child.

Mind you, I was just diagnosed as Bipolar-Depressive (bipolar type 2) and Autistic (Autistic spectrum disorder) at age three, before being adopted.

I was just told all of this a few years ago — that it was for “my own good” to not know, that nobody knew I was adopted or was born with a lot of “problems.”

But joke’s on me, right? Because how is ignoring what I need going to be for my betterment?

Especially since it came around full circle, and I was re-diagnosed with all of this and then some as an adult.

I feel as if I am in mourning all the time– utterly depressed, a dark cloud overhead always looming. This overwhelming sadness and suffocating self-questioning never seem to leave my mind.

I am feeling like I am just kind of coasting through life, not going anywhere, nothing ever changing, not being taken seriously, oftentimes ignored, locked away in my room silently spiraling into a sort of madness.

Who am I? Where do I come from? What am I good at? Why do I never feel truly loved?

How do I really answer these questions? Where do I begin?

I laugh to myself while I write this.

I must really be losing it!?

Yet my depressive nature, annoying as it is, is funny to me somewhere in my mind.

But that’s how I always feel, like I’m just on the edge, the verge.

Nothing ever truly making sense.

Life has never been an easy one. It takes its toll on me daily.

My multiple diagnoses, the fact that I am autistic, losing my hearing, or being disabled has always seemed to be such a problem for everyone else but me. They are ashamed or refuse to believe what’s happening to me. This is why I often feel I’m not Autistic, Deaf, or disabled enough for society, that people think Im faking, like I am not doing myself correctly, as if there is such a thing.

With always being forced to act like everything is fine, or to not do what is best for me, (i.e stimming, or using sign language), how could I ever know myself? Be comfortable with being me, or asking for help when needed?

I am LOST.

How can I be on a journey of self-discovery or self-acceptance when everything is such a hindrance or question? I guess I am writing this out of frustration, but also as a way to get started. To draw attention to the madness.

This is a reminder of sorts of my resilience and to also be kinder to myself, and for you all to do the same.

I write this with a lump in my throat, choking on my words as I struggle to be heard. I let my frustration do the talking through the keys. Life is hard, and no one knows all the answers. Let’s be there for each other and remember not to give up on the journey.

_Stay Lovely, my friends._

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20 Responses

  1. That kind of thing, “I was just told all of this a few years ago — that it was for “my own good” to not know,” is a component of why I sometimes get the attitude that neurotypicals are by definition evil and sadistic people.

  2. GenesizC, I am so sorry all that has happened to you. Keeping that information from you, trying to pretend you have no disability and you just need to try harder!! How could you feel anything other than how you do? My heart goes out to you. Ableism is such a terrible thing. I am multiply disabled and did not know until well into adulthood, I never could understand why life was sooo hard. I really hope you get all the support and AFFIRMATION you need moving into the future

  3. Yes. Hearing you. Beautiful writing. A change is happening but that has no impact on you already lived experience. I agree that adult autistic realisation meant I gained for the first time I obtained an authentic identity. The following diagnosis was much less significant. It was a medical confirmation of something I already owned.

    I am not sure however that I feel a loss in the way you do by not receiving a label as a child but I empathize with you in that something was kept from you. It’s a really hard circumstance. Sorry for your loss.

    What I wish for you is a chance to get closure for that grief. I don’t think healing will be found in anger or resentment which sometimes we are encouraged to feel. I wonder if you are already expressing that you are at a point of change.

    Really embracing a positive identity in your neurodivergent autistic identity would seem to be the aim. Finding others who are comfortable in their own authentic autistic identity would be the ideal.

  4. Hello. I want to let you know that I hear you, and I hear your pain and also your humor and your beautiful self. I hear your grief and also your hope. When my brain and body are stressed or struggling to process input, I also don’t know who I am. When I’m able to regulate, then in my relaxation and engagement, I feel, ah! This is me! I guess disregulated me is me, too, just cluttered and uncomfortable. Wishing you well!

  5. I ❤ this. I feel like I could replace the “I was diagnosed at age three” with my personal story of “I was diagnosed at age 39” and it could be mistaken for my life story. My wish is that people (especially women) living with autism could know that life doesn’t really have to be this hard. I’m also not living the delusion that my life is easy, but I recently learned that there is an alternative to the pain.

  6. If only people started to really understand how their behaviour towards us can be. To me it can often be like making a person with no legs climb a continuous staircase. Then getting frustrated with you because they understand you better than you understand yourself.

  7. Hi GenesizC, I feel for you and I can relate. I have tried to find something to help my self, and found therapists so far to be unhelpful. For me, doing work on curing Codependency (which is a lack of a Self) and happens through trauma, but maybe it also relates to autism somehow. …In any case, reading books on this, looking at YouTube talks on it and also doing workshops and meditations has been helping me. …Shame is often a big part of Codependency, and therefore if the therapies to cure it. I especially have found help with Melanie Tonya Evans NARP meditations. These are very cheap to buy as MP3s online, but you can also just try it (maybe even do your own recording of one) on her YouTube channel under headings “Shifts Happen”. These meditations combine ‘Inner Child’ type of therapies with ‘Focusing’ therapy. The latter is about tapping into ones feelings in your body. Disassociating from one’s body feelings is a big part of Codependency and trauma and I bet Autism also. (I frequently wonder where my trauma ends and my autism starts…). Learning to get back in touch with your inner feelings is similar to reparenting yourself, but there really is something in it. It helped me a lot. Lisa A Romano and her books also helped a great deal. She actually explains why being disconnected from body feelings goes with Codependency and lack of a sense of self.
    The article on here written by the founder of this website, about RSD and Codependency really hit the mark for me. I have been wondering for a while now how Codependency fit with Autism. And I wish it was looked at a lot more.
    I hope the two resources I gave are of use for you. Your article touched me. I hope you find whatever works to help yourself feel freer and happier. I hope the same for me too.

  8. I have the opposite problem. Me discussing with my child that there is a diagnosis of ASD and my kid rejecting and denying the label. I love him no matter what obviously but hoping a label may give some closure or access to resources / people who could be a tribe for support and building knowledge on strategies that could help.Any guidance on how to normalize it given he is a 12 year old and probably struggles as tween with a desire to fit in?

    1. Not really anything i could say, but keep talking to him and maybe show him examples of other kids his age that are similar to him, or his fave characters tht are similar and if tht doesnt help try talking to him again when he is a little older?

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  11. If only the general public could see the full extent to which their actions affect us. Sometimes it feels like forcing someone with no legs to ascend an endless flight of stairs. Then becoming irritated with you when they realize you don’t understand yourself as well as they do.

  12. If only the general public could see the full extent to which their actions affect us. Sometimes it feels like forcing someone with no legs to ascend an endless flight of stairs. Then becoming irritated with you when they realize you don’t understand yourself as well as they do.

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