Getting Better is Difficult
This is one thing I’ve come to realize in the last few weeks. I’ve been in treatment for a neuropsychiatric illness. Antibodies were attacking my brain and I developed severe OCD as well as a host of neurological symptoms, such as loss of balance and poor handwriting.
I’ve been getting so much better since starting treatment. I’m in recovery. But recovery is a long process.
It’s not a thing I think I’m just going to achieve, just like that. I won’t suddenly be better and back to ‘normal’. I am always going to be vulnerable to OCD now as the neural pathways for it have formed in my brain.
I lived with severe OCD for six months, and it terrified me constantly. And it terrifies me to think I could be like it again.
I struggle writing about this fear because I don’t want it to read as if I’m terrified about not being normal (whatever ‘normal’ is). I don’t want this to harm others. We need to make society more accepting of OCD and treat it and other mental illnesses as part of normality.
But at the same time, I am scared.
I remember how bad my OCD was. I could not function. And I don’t want to be like that again.
I feel happy again now, but every now and then, I feel the shadow of my OCD. I feel it rising up and trying to take over.
I start doing my compulsions again.
And I break them as soon as I can, because the memory of what I was like motivates me so strongly as I want to stay in control. I don’t want to get lost again. I want to be myself.
I find it difficult talking about my OCD because it’s autoimmune in cause, the result of Paediatric Acute-Onset Neuropsychiatric Syndrome (PANS, which despite the name affects adults too). I don’t want it to seem like I’m saying “I went mad, but I’m better now.” I don’t want to be framing mental illness as something you need to recover from.
But the thing is, I needed to recover from PANS. I needed to get treatment because my OCD was caused by brain inflammation. Without treatment for the inflammation, it would’ve just got worse. People have even died from PANS and other brain encephalitis conditions.
Talking about my OCD is therefore tricky, and talking about my recovery and my fears is even trickier, but I should still be allowed to talk about my experiences of mental illness, even if they were neurological and autoimmune in cause.
I still experienced severe OCD.
I was still terrified.
It shouldn’t matter what the cause of it was, it shouldn’t change the validity of my experiences or mean that my OCD wasn’t real.
Because it was.
And getting better is something that I’m finding difficult. Recovery isn’t easy, and I want to be able to talk about it.
Madeline Dyer is a young adult novelist. She also writes personal essays on topics such as mental health, disability, and neuropsychiatry. You can follow her on Twitter and Instagram @MadelineDyerUK and visit her website www.MadelineDyer.co.uk. If you’d like to keep up to date with her writing, you can follow her on Facebook for both her novels and her personal essays.