Summary: Carly talks about mental illness and why she still doesn’t really want to talk about it. Advocacy is hard!
Most people don’t know this, but my disability advocacy work didn’t start with physical disabilities – it started with sharing my experiences with depression and generalized anxiety disorder (GAD) at age 14.
If you won’t ask it, I will: “what happened?”
And the honest answer that I’m grappling with as I type is: “I don’t know.”
Or, more reasonably, I don’t know why or how I chose to return to disability advocacy, and alienate the disabilities that got me here in the first place.
As the relationship between mental illness and physical disabilities hits the disability-mainstream in what feels like all the wrong ways, I felt an obligation to re-incorporate my mental illness advocacy into my work. But a lot has changed since 14, and I have had to do a lot of personal work to understand why I abandoned mental health advocacy in the first place, how I can best advocate for the multiple types of disability I experience, and how I can discuss some very personal and difficult topics under what can sometimes feels like a microscope.
With my physical disabilities of psoriatic arthritis and fibromyalgia, I know what I’m doing. I understand how the diseases work, what triggers them, and how to cope. They are predictable (most of the time) and manageable (or at least, I know what resources work for me.)
With my mental illnesses, first GAD and depression at age 12 and now GAD and PTSD, I have absolutely no clue what I’m doing! Despite countless hours of research and many ghosted therapists (if the therapist that showed me fainting goat videos for like 15 minutes is reading this – please reflect), I don’t have all the answers – and that foundationally challenges how I frame myself as an advocate, and as a human being.
I know a lot of us feel as though we’re supposed to have all the answers, while never expecting others to act likewise. But advocates are under an additional pressure – we’re the ones in consultations, panels, interviews, all to explain our experiences with accuracy, clarity, and (let’s be honest) enough censorship to make the whole thing palatable for a non-disabled audience.
And that’s where we left off. My mental illness advocacy took a nosedive once my PTSD developed. I’ll save the PTSD deep dive for another day (or another year! life is tough sometimes folks!), but basically once I no longer understood what was going on in my own head, I did not feel educated or comfortable enough to get into others’.
While I began to understand my physical disabilities and advocate for them, my personal experience with mental illness was stagnant. I wasn’t getting better, I wasn’t understanding things, and I still hadn’t gotten help. My physical disability advocacy took off while I allowed my work with mental health to be sidelined.
And now we’re caught up to speed. I still struggle immensely with my PTSD, but I can confidently say I have made incredible progress. I got help, I got a diagnosis, I stopped having flashbacks, and I’m now in an incredibly healthy, loving, and supportive relationship. I can’t remember most of the 2 year period between PTSD development and treatment (also another topic for another time), but I’m sure that Carly would not have believed this possible. On the GAD front, I’m as relentlessly anxious as ever – but I’m learning to accept help for it and work on coping mechanisms instead of treating is as some kind of character quirk.
The new question I’m asking, and maybe you are too, is “where do we go from here?”
The first step is actively working on understanding my PTSD and GAD better. Not understanding my PTSD took me out of the advocacy game, so I’m going to have to confront a lot of personal brain stuff if I want back in. (This does not sound fun at all! Advocacy work is not easy folks!)
The second step is deromanticizing mental illness. Nothing about my false realities, auditory hallucinations, or hypervigilancy is romantic – it’s scary, and stressful, and challenging. The romanticization that primarily occurred on Tumblr towards depression and anxiety was not a reduction in stigma or a step towards normalization – it was and is a harmful phenomenon with real life consequences.
The third step is bringing my mental illness and physical disability advocacy together. Only then will I be able to share my personal experiences with disabilities in more accurate, realistic, and comprehensive ways.