Thread by @mykola

Every once in a while I remember the night I Burned Out and the subsequent year and a half and I just start sobbing.

It was the worst time of my life, I literally wanted to die every day.

I think I have some ptsd around it that I haven’t processed.

Do you know what it’s like to suddenly lose the ability to mask?

When you have only just discovered that you ARE masking, still figuring out what Autism means?

Do you know what that does to every single relationship in your life? How deeply alone you are when you go through it?

When my burnout started I told my best friend I was suicidal. He dropped everything to fly out and spend a week with me.

He didn’t believe I was autistic.

Three months later he friend-broke-up with me because I was “too negative”.

I lost the ability to do programming work.

This sucked, because unfortunately that’s how I pay my bills.

I was a terrible employee for about two years, but made up for it by being really kind. People liked me but I still had to leave that job.

(I got that coding ability back, or most of it, eventually. But it took medication and time, and I’ll never be 100% again.)

I had a really good relationship with like two members of my family; then one day on Facebook my sister-in-law started being really shitty to me in a way I couldn’t understand, I had to block her.

Later my brother explained that I was just “so annoying, you know?”

Oh.

Anyway.

This is why we mask.

When we stop everyone around us turns on us, polices us, abandons us and makes our distress and emotional reality entirely about themselves.

And it hurts so, so much to be so alone.

To know that your acceptance as a person is contingent.

Do you know how it feels to beg for help as clearly as you can only for people to get mad at you for yelling at them?

How it feels to do your best to clearly articulate your needs but to have the conversation turn into a lecture about your tone or facial expressions?

I think I woke up with this on my mind because of this thread, which I weighed in on here. People liked my answer (it's a good answer!) but it reminded me that in my case unmasking DID mean losing friends and family at my lowest point.

https://twitter.com/mykola/status/1501751923703259138

There are a number of people replying that they went through similar experiences.

If you are a young Autistic person who has not gone through this yet, please take a minute to really understand that this is the inevitable cost of masking your whole life.

Masking is a powerful tool if used with intention - but if used as the default mechanism for human interaction it will build a life for you that you don't want to live.

Here's how to unmask: coda.io/@mykola-biloko…

Final note:

Sometimes, people have trauma. If someone has trauma around e.g. being yelled at, and you unmasking sounds to them like yelling, then there will be real problems.

There are times when masking is appropriate, either to smooth social interactions or to protect people.

Realized I haven't really talked about the symptoms of Burnout in this thread, so let me make a quick addendum just to describe what the state was really like:

1) In burnout it physically hurt me to receive new information sometimes. I think there's something unique in how the Autistic brain parses input, I think we do a lot more work when receiving information and that's why we can regurgitate it so quickly.

My body lost that ability.

2) I wasn't able to control my emotions _at all_. Every feeling I had became the dominant force in my life until it passed.

This made me seem *insane* and sometimes *abusive* to people as I articulated every minor emotional thread in my chaosbrain.

3) My executive function, which had never really been my friend, up and moved across state lines without telling me.

I couldn't feed myself, couldn't shower, couldn't read, couldn't even play video games.

I just... sat and wallowed in pain and fear.

4) I am 230 pounds and 6 feet tall. When I am emotionally dysregulated I am terrifying to some people, and I get it.

I ended up losing friends and family because they felt I was unsafe. The shame that came with that compounded the pain.

5) I was especially unable to show up for anyone else for almost any reason. People in my life were going through horrific tragedies and I was unable to be at all supportive, instead adding my shit to the shit they were already dealing with. I didn't know how not to.

6) I used up 100% of whatever energy I had to show up to work and do my absolute best to make any kind of progress. I got to the point where if I opened my laptop, typed a few things and pushed to GitHub _once_ then that was maybe a day for me.

7) seriously, the concept of "non-zero days" was life-changing when I was in this state. I felt _so terrible_ about my lost productivity that it took me a long time to accept that I was disabled.

Accepting that low productivity was better than none made a difference.

8) I would meltdown at the drop of a hat. Any time someone got upset with me (or honestly even talked to me, sometimes, because again -- receiving information physically hurt) I'd lose my shit for hours, sobbing and melting down.

9) Because each meltdown makes the next one more likely, this meant I spent that year in a more-or-less permanent state of either meltdown or meltdown recovery.

It. Was. Hell. And. I. Wanted. To. Die.

But I chose not to, I pushed through, I got help.

10) What helped?

Bankruptcy on all obligations, starting trauma therapy and discovering ADHD medication all combined to help me accept my diminished state and learn to focus on what I was capable of, not on what I wanted to do.

10 (con't)

The other thing that helped was a frank conversation a friend had with me, who had been through a similar crisis.

He told me: it took you decades to get to this point. You are not going to come out of it in days or months. Give yourself ten years.

It helped a lot.

10 (con't)

The other thing that helped, sort of, was marijuana.

Marijuana has the remarkable ability to cut through a meltdown, to peel back the layers of CPTSD, to create space in my brain so I could respond instead of reacting.

The tradeoff is, I am addicted and do too much.