9th of May 2020
To whoever reads this
My depression is gaining a strong hold on me again. It was never anywhere near gone, but the last week it has been sneaking its way back. It was a slow thing. Almost unnoticeable. I do the work and fight to keep it a bay and yet here I am again. Not knowing why I should get out of bed, why I should cook dinner, why I should do anything. Which is the kind of thoughts that leads me down a path to thoughts like why should I be alive. And suddenly living looks like the worst idea ever. And taking care of myself feels like the opposite of what I should be doing.
And I keep doing the work. I get out of bed and cook dinner, I take a shower, I reach out to the people I can reach out to, I get out of the door and go for walks, I read, I read at the ruin. And none of I brings me any joy or meaning. I am a passenger in my own life, waiting for it to be over. Distracting myself, because being Here feels to painful and impossible.
And that is the problem. I do not want to be distracted. I refuse to be a passenger in my own life. I want to live this life I have been given, and be present in it. I want to do the things I can to make it worth living. But somehow I can’t seem to do that. I feel like getting Here is such a fight, and the moment I relax too much, the moment I lose concentration I snap right back to my baseline which happens to be depressed and in pain. And this is no way to live. At least for me. I would rather not live than live like this.
I feel like I am doing the work. I am doing the good things for myself, I am trying to take care of myself. But I keep failing to actually get better. Like real better.
Last year I read “Lost Connections” by Johann Hari. It confirmed everything I had been thinking about depression and helped me find words for the things I instinctively knew but had no words for. Johann Hari describes depression as being disconnected. And that is truly how I feel. Disconnected. He describes 7 different ways to be disconnected and I was surprised that almost all of them described some aspect of what I have been trying to tell the doctors for the last 1.5 decade.
I feel so disconnected. But there is only so much I can do to reconnect. I am doing the things I can, and maybe it just needs more time and more consistency. But I also feel like I need a helping hand. Feeling disconnected from other people means I need to find more people and communities. But I cannot do that on my own. I need other people to like me and want to invite me to be part of their lives, I need communities that have room for me and that is a good fit. Both of these things are partly out of my hands.
I feel disconnected from trauma, and I am doing what I can to face my traumas and relieve shame. But no one can do that entirely on their own,
I am disconnected for nature and luckily that is one I can do something about on my own. It takes work since I live in the middle of this town and have to walk or take the bus to places where I can be in nature, but I am planning to find ways to make it happen more and I have made it a bigger priority.
I am disconnected from meaningful work and a hopeful meaningful future. But for now those thing are out of my hands. In part because of the pandemic, but more because of my mental health situation (my doctor calls it a chronic illness and tried hard to help me cope with the fact that I’ll never be able to have a full time job or get the education I dreamed of). I’ll need a part time job and because of the autism I’ll need a few accommodations and some support. And I can’t just take any job, again because of the autism. And the hardest part of this one, is that when I tell people that not having a hopeful future with meaningful work is affecting my depression and making it worse I am told that is irrelevant and just to take medication.
But we can’t medicate hopelessness away. We can’t medicate me into being not autistic and being able to handle any job. And even if we could I wouldn’t agree to it.
I know my current situation is being made worse because of the pandemic. I can’t go to work and I can’t see my friends. And that has a big impact on my mental health. Like it has for so many (I’m not special or an exception in this). I think the thing that is hitting me extra hard is how much of this isn’t the pandemic but just my regular baseline. That I now can’t distract myself from with work. And knowing there is no help. I won’t get better. Not because better isn’t a realistic thing that I could achieve. But because I don’t have the money to pay for treatment and support, and because the health care system here, doesn’t have any idea how to help autistic people. It’s not a physical illness and it’s not a mental illness so no one know what to do with me. And the support system that should kick in to help me instead is impossible to figure out and keeps referring me back to the health care system that keeps telling me they are not responsible for me.
Society and systems I live within are telling me there is no one to help me, that help is impossible, and somewhere under all that is a message about not being worth helping. And that hurts. Because I truly believe that I could get better if I could just get the right help. Not as in I would no longer be autistic. Not as in I would suddenly be able to take any job at full time. But as in I would no longer be in this pain and I would be able to live and take care of a job part time and build a life that has meaning and is full of both challenges and good time. Not just full of pain, depression and suicide thoughts.
I am trying really hard to be Here. On the balcony, at the ruin. But every time I try I find myself wanting to escape. But I still try again. I am not sure I am being kind to myself these days, but I am trying. My thoughts spiral into dark, angry, hurt places I don’t want to go. So I pull myself back and call someone and talk and distract my thoughts. And then I am disappointed in myself for letting those thoughts take over, and even more disappointed that I needed to talk to someone to get away from them, because I expect that I should be more independent and self reliant than that.
I wrote last week that I was doing better. I am not sure that was the truth. It doesn’t feel like a lie. And I don’t like that I can’t place it neatly in one of those two categories. Maybe it doesn’t matter. Maybe things can be more complicated than that. Maybe it so subjective that truth or lie are the wrong categories. Maybe I don’t need to worry that someone calls me out on saying one thing last week and another this week. Maybe having weeks I am able to focus more on the good days and less on the bad, doesn’t erase that the bad is still there underneath. Maybe I am allowed to be thankful and focus in the good days when I can, without putting the disclaimer that I am still autistic, depressed and full of unresolved trauma that cause me pain. Maybe there are good reasons I feel the need to clarify and maybe those reasons are more important than whether saying last week was better, is a lie or not.
I am sad that this post got so depressing. But it fit’s how I feel these days. I just have to keep doing the work of keeping myself going. I am determined not to apologise for being depressed. Apologising is one of the things I am actively doing a lot less of. If I keep apologising for existing I am going to keep feeling like I am not allowed to exist. And that’s not helpful. So I am expressing that I am sad about the depression expressed in this letter. But I am not apologising for it.
Whoever is out there I hope you are doing well. I hope you are having better days and thoughts than me. If not know you are not alone. Thank you for sitting with me through this. I don’t even know if anyone is out there reading. But that’s ok. I imagine someone is keeping me company as I type and I wish whoever that might be well. Thank you for your time.