One thing I’ve mentioned recently but not gone into great detail about is my mental health. As I’ve said before, round about my 25th Birthday something just clicked in my mind. I began hearing and seeing things differently. And for the first time in about 15 years, I started to feel genuinely happy. I know it’s shocking to suggest that I’ve been depressed since the age of ten, however, when you live with multiple invisible disabilities, it’s hard not to be. So here’s a blog expanding on where I’m at mentally.
Where I was
I’ve been labelled negatively most of my life. To put this into perspective, I’ve been doing some actual research work recently and one thing I discovered is that a large benefit of autism diagnosis is self-understanding. When discussing this, my colleague asked me how I saw myself before I got my diagnosis and the only thing I could think of was ‘naughty’ and ‘bad’. For almost 16 years of my life, that, along with epilepsy, was all I had to describe myself. This merged with constant failures to meet my own and society’s expectations lead me to pure pessimism.
Nothing ever seemed to go my way and no one was ever willing to help. I felt so marginalised and disliked that I stopped even trying. I’d been hurt and turned away by so many people that I couldn’t see a situation in which anyone would ever say yes. And I knew one more ‘no’ could very easily push me over the edge. I developed such an intense fear of rejection that not only did I stop applying for jobs and asking people for help, but I stopped opening emails even when they were likely positive responses. Anything good felt like it had to be a fluke and I had zero self-worth because I was unable to accept praise from others without assuming they were mocking me.
Of course, there is far more to it than this. My depression has been caused by over two decades of trauma. And although it’s never been diagnosed I believe I have PTSD to some extent. Many events in my life have been traumatic and when merged it’s hard to differentiate between what makes me feel what. But as I said, six months ago something clicked and things changed.
Where I am
To explain this change to myself and others, I’ve been using Schrödinger’s Cat as an analogy. Although this theory was designed to question quantum physics, it’s a pretty good metaphor. As I said, I previously assumed any email or question I opened would be answered with a no. However, just like Schrödinger’s Cat is both dead and alive, until the box is opened revealing the truth, the answer is also both.
Before I was unable to view my chance as being 50/50 because I felt like everything was against me. But now I understand that isn’t the case. I’ve realised maybe may mean yes and not achieved is just not yet. In a way, it’s like a fog has suddenly cleared. For the first time in nine years, I can hear the positives people give me. Previously anything good was getting blocked out and being able to hear this has helped me build up my confidence. I know I won’t stay happy forever, so whilst I’m still able to believe in the good I’m grabbing every opportunity I can.
What it’s like being here
This idea of happiness is very new to me. Again, this may sound shocking or exaggerated but this is a very fresh feeling for me. I feel almost guilty that I’m experiencing this change in the middle of a global pandemic. Whilst the world is collapsing, I’m rising like a phoenix from the ashes. And in a way, these past six months have been the best of my life. Not because anything spectacular has happened, I’ve barely left the house, but simply because I’ve been able to enjoy them.
Throughout 2019 I thought I was going to die and through the first half of 2020 I wanted to. But now I wake up most mornings excited to still be alive. Life is by no means easy. I still have a long way to go in many areas. This is why for the first time in my life I’m focusing on the now and enjoying each day as it comes.
When things came to a halt for me in 2019 I was no longer able to look forward. So I started looking back. And that just dragged me further and further down. I’m focusing on passion and enjoyment rather than progression because I know in the long run that’ll get me further. I think this is hard for some people to understand. But after being held back for so long by my mental health, I know the only way for me to move forward is to keep it stable. And if that means binge-watching TV whilst knitting in my room all day, that’s what I’m going to do.
Where I need to go
As I’ve said, things still aren’t easy. Since nearly biting my tongue off five weeks ago my anxiety has been heightened. That moment of pain and realisation just keeps popping back into my mind, I’m so scared that next time I really will bite it off. I had a smaller seizure this past Tuesday and for a while, that reassured me. But I’ve not been fully ‘right’ ever since which suggests there’s a bigger seizure brewing. This evening I started palpitating and stuttering because I was so anxious about what may happen when I go to sleep tonight. And sleep is definitely something I still struggle with.
I can’t control my epilepsy which is why I’ve been forcing myself to focus on what I can. It’s definitely better controlled than it was but it’s a still a key aspect of my daily life and always will be.
In regards to everything else, there’s also a lot of work to do. Although I’m doing a lot of ‘work’ at the moment, I’m not actively looking for a job as I know I’m still not ready to deal with all the ‘nos’ I’ll get when I do. Instead, I’m building up my experience level and working out exactly what it is I want to focus on. As discussed in one of my previous posts I need that more than others. I feel like Rimmer from Red Dwarf, only instead of an ‘H’ for hologram, I have an ‘E’ for epilepsy permanently plastered on my forehead. And that is a massive deterrent for employers.
Mental health is a hot topic at the moment. It’s a journey everyone goes on and one that never ends. At the moment I feel as though I’ve gone as far as I can alone. A lot of my improvement is down to time, meds and my magnificent VNS but I’ve put a lot of work in too. I’m still on the waiting list for specialist CBT and I’m confident that that’ll help me get closer to where I need to go.
For now, I’m just taking things as they come. Each day that passes without a meltdown (autistic or mental) is a day I’m grateful for. And gratitude is certainly something I’m feeling a lot of right now. I am so lucky to have the support network I have and without my family and friends, I’d be in a very different place to where I am now. They know who they are.
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