I feel both happy and lost.
Yesterday I had my last appointment with my therapist. When I walked in, I wasn’t completely sure it was going to be the last one — but I’d had a strong suspicion it would be.
I have Paediatric Acute-Onset Neuropsychiatric Syndrome (despite being an adult). Antibodies attack my brain and cause rapid-onset OCD along with other psychiatric symptoms (such as hallucinations) and neurological symptoms (such as changes in handwriting).
For six months, we didn’t know this was the cause of my OCD. I had week after week of challenging Expose and Response Prevention therapy as part of Cognitive Behavioral Therapy. And I was struggling so much. Most sessions, my anxiety and depression scores were either worse or the same. Occasionally, there was a slight improvement, but not enough. My therapist told me she was considering ‘stepping me up’ for a higher grade of treatment.
This scared me because my previous experiences with this have not been that great — but she assured me it would be different this time.
Yet that never needed to happen.
We found out I had Paediatric Acute-Onset Neuropsychiatric Syndrome (PANS), a condition now recognized as a subtype of OCD.
This discovery saved me. It really did. We found my brain was inflamed and that was causing my mental health issues.
I started treatment immediately, but there had been a lot of damage done in the six months it had been left untreated.
I’m three weeks into recovery now, and I’ve had two more sessions with my therapist in this time. And in both of those sessions, my depression and anxiety scores have been consistently low. In both sessions, we’ve seen vast improvements in my OCD — I’ve stopped about 80% of my compulsions. My OCD is no longer controlling me and I’ve worked up my ERP hierarchy at a surprising speed.
And so, yesterday, I was discharged from the mental health services system. My therapist was pleased with my progress and confident I have the tools to keep fighting my OCD on my own now from a therapy point of view. I will of course be continuing the treatment for the inflammation on my brain for a lot longer.
Being discharged from the system was a strange moment. Just hearing those words had me feeling dizzy.
This isn’t the first time I’ve been discharged from mental health services.
I’ve had several other courses of CBT and exposure therapy before due to my issues with eating and severe food anxiety.
But this is the first time where both my therapist and I agreed that I was ready to be discharged. The other times I was either discharged from one system so I could be placed in a higher-level of mental health care (which I wasn’t very happy about) or I discharged myself, against medical advice.
Having my therapist tell me that she thought I was ready to leave the system was so validating to the efforts I’ve put into my exposure therapy in the last few weeks. Though I know a big part of it is down to the fact my brain inflammation is now being treated.
I feel free again — though I will still have monthly check-ins to ensure my OCD and brain inflammation are controlled.
But I also feel a bit lost.
This is the first time in at least six years that I’ve felt like maybe I’m doing okay now. Maybe I don’t need to be in therapy at all. Maybe I can do this.
And this feeling scares me a bit.
In a way, I feel like I’ve been cast out into an ocean — and what if I find I can’t swim for as long as everyone believes I can?
What if I end up drowning?
And if my PANS comes back — and I’ve been told there’s a high chance of it — I’ll need therapy again.
But this moment right now is a little scary.
But it’s scary.
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.