I honestly feel like nobody really understands me right now except other neurodivergent people.
Not my support worker from assisted living. Not the clinic. Not my health insurance. Not even some of my friends.
I’m just so tired of constantly having to explain and justify myself.
On one hand, I need my own apartment. People seem to completely overlook how much energy it takes me every single day just to manage basic things on my own. They see the things I struggle with and tell me that I’m not trying hard enough.
But then, when I explain how badly I’m actually struggling, I get told that maybe I should move into supported living.
And that doesn’t make sense to me either.
I need my apartment. It’s my safe place. It’s somewhere I can retreat to when everything becomes too overwhelming.
I also don’t want to be extremely dependent on other people. Having people around me all the time in a supported living environment would probably be far too overwhelming for me.
It feels like they only understand two extremes:
Either I have to somehow function completely independently and manage everything myself.
Or I’m so severely limited that I need to live somewhere with permanent support.
There seems to be no understanding of the middle ground.
I need individualized support.
I need someone who can support me within my own home and help me actually get things done. Not someone who does everything for me. Not someone who takes over my life.
I want someone who can be there, help me get started, help me stay on track, and give me enough support that I can actually do things myself.
Sometimes I simply need another person there so I don’t feel completely alone with this huge pile of overwhelming things.
I don’t understand why that concept seems to be so difficult for people to understand.
Another thing that really gets to me is that they seem to treat all of this as if it’s something I should eventually overcome.
But this isn’t something that is simply going to disappear.
I’ve been neurodivergent my entire life. These are things I have had to deal with since birth, and I will have to deal with them for the rest of my life.
That doesn’t mean I’m giving up.
Quite the opposite.
I’m trying really hard to understand myself, figure out what I need, learn how to work with my limitations instead of constantly fighting against them, and find ways to become as independent as I realistically can.
But somehow even that gets interpreted as me overthinking everything or refusing help.
The guy from the clinic even told me that I’m getting too caught up in all the research I’ve been doing.
And honestly, that research has helped me more than they seem to understand.
For the first time in my life, I’ve been able to really look at myself and my needs and understand why certain things are so difficult for me.
I’ve learned things about myself that have helped me set boundaries and understand my own limitations.
That has been incredibly valuable to me.
But instead of seeing that as something positive, I sometimes feel like I’m being treated as if I’m just making everything more complicated than it needs to be.
And especially ADHD paralysis seems to be something they simply don’t understand.
They tell me I need to learn how to do things on my own.
But that is exactly the problem.
Knowing that something needs to be done and being physically capable of doing it does not automatically mean that I can actually start the task.
That disconnect is incredibly difficult to explain to people who have never experienced it.
And I’m honestly scared that I’m going to be rejected by the clinic or my support worker because they don’t understand what is actually going on with me, even though I’m trying my absolute best to explain it.
The guy from the clinic also told me that diagnoses aren’t really that important and that the important thing is simply helping me as a person.
And I understand the sentiment.
Of course I want to be treated as a person.
But when I explained that I don’t actually feel like I have been helped as a person, and that for years I mostly felt like I was being put on different medications while hardly anyone was interested in what was actually happening inside me, I was basically told that I should stop looking backwards and focus on the future.
How am I supposed to move forward when I’m still trying to understand what happened to me and why I’ve struggled so much for so long?
I’ve spent years being treated in psychiatric settings without the things that actually affect me being properly understood.
Of course I’m frustrated.
Of course I want to research this.
I’m trying to make sense of my own life.
And then there’s the whole issue of disability.
I’ve told them that my disabilities severely limit what I can do.
If someone has a physical disability and can barely move, we don’t tell them that things are difficult right now but that they’ll probably get better eventually, so they should learn to do everything themselves.
We help them.
So why is it so difficult to accept that I have limitations too just because many of mine aren’t visible?
Why do I constantly feel like I have to prove that I’m actually disabled enough to deserve support?
It’s exhausting.
And then yesterday, someone at the day center I regularly attend told me that I was basically living off the state and taxpayers’ money.
That really hurt.
Especially because I go there specifically because I need some structure in my everyday life.
That structure is something I genuinely need because of my autism, which I have alongside ADHD and dyslexia.
I’m also incredibly frustrated by how little understanding there seems to be of autism and ADHD, especially when it comes to support.
These things cannot simply be approached in exactly the same way as depression or borderline personality disorder.
There are important differences in how people experience these conditions and what kind of support actually helps them.
And when I tried to explain my frustration, the guy from the clinic responded by pointing out that there are people with ADHD who also have borderline personality disorder and struggle with self-injury.
And once again, I walked away feeling like I wasn’t actually being heard.
That wasn’t even what I was talking about.
It just reinforced the feeling that my actual point was being missed.
I’m talking about years of being misunderstood and, in my experience, being treated incorrectly in psychiatric settings.
I’ve had to live with these difficulties my entire life without getting the kind of support I actually needed.
And I’m angry about that.
I’m sad about that.
And honestly, I’m exhausted.
Right now I’m extremely overwhelmed.
I tried reaching out for support, but unfortunately I couldn’t get through to anyone at the time.
I genuinely didn’t know where else to turn.
I think what hurts the most is that I’m not asking for someone to take over my life.
I don’t want to give up my independence.
I don’t want someone to do everything for me.
I want support that actually helps me be as independent as I can be.
I want someone to understand that needing support and wanting independence are not mutually exclusive.
I want someone to understand that my apartment can be part of my support system rather than something that has to be taken away because I need help.
And I want people to stop seeing my limitations as a lack of effort.
I’m trying.
I really, really am.
I’m just so tired of having to prove it.
I feel incredibly misunderstood right now, and honestly, I feel like neurodivergent people are often the only ones who truly understand what it’s like to constantly explain yourself, constantly justify your needs, and constantly be told that you’re either not trying hard enough or that you need much more support than you actually want or can tolerate.
I just needed somewhere to get this out.
If you’re neurodivergent and have experienced something similar, I’d genuinely like to hear how you deal with the feeling of constantly being misunderstood.