My whole life I struggled to hide in plain sight, but since my diagnosis I have struggled to be seen. It’s odd to experience how trying to hide can make you stand out and how trying to be seen can make you ignored. At least, that is how it has felt to me.
About two weeks ago I started something new. I have been asked by the case worker in charge of my case to get an internship, and because I have a lot of challenges, she decided to give me the chance to start at a Foundation that specialises in training people on the spectrum and facilitate jobs for them as well.
I didn’t mind, in fact I welcomed the idea.
As I have said before, I want to work and live independently, only it can be difficult when faced with discrimination and prejudice of the kind those of us on the spectrum meet on a daily basis. I understand why there are these prejudices, but it is hard to remember this in the face of such judgemental behaviours.
I know the people at the Foundation are trying to help me and I truly appreciate their assistance. I just cannot help but notice how often I feel like my words are misunderstood. I don’t think it is ill-intend, I think it is the idea that some people think they know what is best for me and sure, perhaps they do. There is a lot of things I still struggle to understand about myself and in all fairness, they have a lot more experience with cases such as mine than I do myself.
The danger here is probably that I believed these people to be my last hope and because of that, when they failed to understand me several times, I felt heartbroken. I still feel heartbroken because I know that even now, after I have written and tried to explain, my words are misunderstood. It makes me feel like I will never truly be seen and it hurts. It makes me feel invisible – like my life doesn’t matter in this world.
It is a little funny or sad, I am not sure which, how I always felt exposed and watched and afraid when I was trying to hide – to blend in. Back then I was constantly aware of myself and everyone around me, always trying to judge their perception of me and figure out whether or not they had realised just how broken I was compared to them. I knew I could only hide for a while and that one day my charade would be for naught and I would be caught out. I don’t entirely know what I thought would happen to me, but I felt like it was a matter of life and death for me.
Once I stopped pretending, I thought my fears would be over. I thought people would know what it meant when I said I was diagnosed and on the spectrum, I assumed they would see how it makes sense and like me, feel ridiculous for not seeing it sooner. Of course, that didn’t happen. Most people don’t really know what it means, just like they don’t realise just how many are being diagnosed with ASD.
They watch TV shows and movies, and while they realised those characters are stereotypes, they also seem to hold on to those exact stereotypes when they come across people like me and that’s a mistake. We are all different, atypical and neurotypical alike. We have that in common.
Going to this Foundation several times every week is a challenge. Not because of the place, but because I don’t handle transportation that well and on top of that, I have to go back and forth during rush hour- it’s like spending four or five hours in hell every single day I go there.
Once I get there I put on a bit of the mask I used to wear, because if I didn’t I would be hiding under a table, crying because of the traumatic experience of going there and back. I’ve already had more meltdowns in that place than I have had the last two months.
I was doing really well, you know. I had my life under control, and I was even starting to get a little happy. I had hope and dreams. I felt like I had a chance.
Then I started and my whole world started falling apart. I feel like I can’t tell them just how painful it is because it makes me feel ashamed that I can’t even take a bus without a panic acttack, but I don’t want to be controlled by shame. I tell them all the time how challenging and painful it is. I tell them how I can’t eat properly – not even at home. I tell them how I don’t sleep at night, not really, I just lie down and toss and turn and cry until morning breaks and I go downstairs to drink a cup of hot coffee while praying I won’t cry in front of anyone there.
I don’t show them all my meltdowns, but I decided not to hide them either. I sit in plain sight when I break down, sure I sit on the floor, but all you have to do to see me is look left down the hall.
Is it not strange then, that even being honest and not hiding my meltdowns makes me feel more invisible than ever?
One person has noticed me break down in front of her, and she looked clearly affected and confused by it and I am sorry she had to see it. But I can’t hide these things now. I need these people to see me and help me find a way to live independently in the future.
Why is it then that I feel so invisible?
I wonder if the best way of hiding is to not hide at all. Maybe this is the real way to not be seen, just be in plain sight and be yourself and they won’t see anything but what they think you are.
It doesn’t really matter, I guess.
My meltdowns won’t go away any time soon. All the hard work I did trying to heal myself after my burnout is worth nothing if my life continues like this. I fought hard every day for two years to get here and in less than a month I was pulled right back into hell. The worst part is, I have to walk this path to get out. No one told me how many times we have to face the same demons before we get to break free. I guess nobody really knows the answer to that.
So, I guess, my point is I have been having a hard time lately. I know this is my best chance to get a brighter tomorrow, and poets always say it’s darkest before dawn, but I don’t know if I would have done this had I known how hard it would be. Perhaps it is lucky, then, that I did not know.
I wish I could somehow convince myself that these people were not my only chance. It is not fair to me nor them to think this way. It’s too much responsibility for any one person, except for oneself. I wish I could see myself as my last chance, but I would probably not have much faith that anything would get better if I though I was.
In the end, the only real conclusion can be that no man is in charge of his destiny, we can only try our best every day to be our best and hope that that in itself is enough.
Should I not get the help I need from this Foundation and its people, then I will have to carve out a new future for myself. People like me tend to struggle with a lot of issues; anxiety, depression and such. We don’t have much in the self-worth and confidence department, either that or we overcompensate – at least in my opinion.
We have never been treated as equals by the so-called normal people we interact with daily, and I think some of us might be inclined to believe the overwhelming evidence we see in the judgement others pass on us. Not because we would believe one such individual who calls us stupid or freak or even crazy, but because so many calls us similar things that we cannot but take the accusations serious.
I know that I have always felt compelled to believe a lie if enough people say it, even though I don’t want to believe it and my mind is telling me not to – my heart, the fear inside of it at least, wants to believe.
There is no such things as destiny, in my opinion, only very likely outcomes.
If my very likely outcome is that I shall be doomed to live without finding happiness in this life, then my decision is that I will die searching for it, not giving in to the knowledge that it may never come.
If these people can help me, I will be grateful. If not, I will not give up on finding some light in darkness. I have to remind myself of this, but I have already made up my mind to remind myself as many times as needed. What about you?
