DiversifYA: Ellen Rozek
|August 5, 2013||Posted by DiversifYA under DiversifYA, Mental Illness and Neurodiversity|
Today on DiversifYA, Ellen Rozek joins us! Among other things, Ellen writes amazing YA thrillers and YA dark contemporary, and she also happens to be extremely lovely. Follow her on Twitter here and read her blog here.
Ellen joins us today to talk about living with Generalized Anxiety Disorder (GAD) and Tourette’s, both disorders that come with a fair share of misconceptions, so I’m *so* excited to have Ellen here to share her experiences.
1. How do you identify yourself?
I identify myself in a lot of ways, though the clarifying terms I use the most are ‘woman, recent college graduate, and writer.’ One of those clarifications is obvious, one gives other people an idea about where my life stands, and the last gives the same people an idea about where I want it to stand. I’ve never wanted to identify myself by my ‘issues’ –the colloquialism I’ve used since I was old enough to realize I was different. That seemed like an easy way to be misunderstood. Only since college have I openly acknowledged the truth. Those ‘issues’ are more commonly known as Generalized Anxiety Disorder and Tourette’s Syndrome.
2. What did it feel like growing up with GAD and Tourette’s?
For awhile, it didn’t feel like anything except a giant headache, something I could never fully escape from. To be honest, it still feels like that way sometimes. As a kid I was an enormous worrywart. I could pull serious concerns from the most mundane issues. Most of the adults around me seemed to think it was a sign of my precociousness–worrying about things like an adult–to the point that I believed it sometimes. And yet, I spent far too much time being this scared little kid who had mini panic attacks and couldn’t seem to get out of her own head way too often.
If I was hyperaware of my anxiety as a kid, the Tourette’s mostly slipped by me. It took my parents mentioning the tics that younger me had had to a psychiatrist I started seeing in high school for me to realize how much I’d missed. Really, I wasn’t all that aware of the tics until I hit junior high, and even then I had fewer symptoms in 8th grade than I’ve had in the last ten.
At the same time, I could be very much a normal kid. I played with friends and ran around outside and read piles of books when I should’ve been doing other things. 🙂
3. What are the biggest challenges? Conversely, what are the quirks/perks?
The biggest challenges are the day to day exhaustion of trying to keep the symptoms in control. I’ve gotten very good at recognizing what makes my symptoms worse and when that starts happening, and I take medication to help me, but being so constantly self-aware makes me really tired most of the time. I’m constantly on the lookout for stressors and repetitive behaviors–everything from muscle spasms to breathing patterns. It isn’t just anxiety that makes the tics worse though. Any extreme emotions that get free, no matter where they fall on the spectrum of positive to negative, can set off a string of tics. Sometimes having nothing to do or focus on ruins my constant concentration, and other times having too much to do has the same effect. Certain activities can set me off sometimes and not others. Both issues are stupidly inconsistent. Just when I think I’ve gotten good at predicting the way they’ll go, everything will change.
I wouldn’t necessarily argue that there are perks, per se. One quirk could be that the majority of the people I meet think I’m just super fidgety. I have a feeling I’d be a twitchy person without the tics, which is something most of my friends and family seem to find more endearing than anything else. (Thank God.) Even some of my oldest friends had no idea that I had Tourette’s or GAD until I told them, and it was oddly reassuring to mention my ‘issues’ to people I’ve met and find out that they’d suffered from similar things. Knowing that GAD in all its myriad forms is super common has helped me feel less alone, and that’s a definite perk.
4. What do you wish people knew about having GAD and Tourette’s?
That it isn’t something you can just turn off. I’ve heard more people than I can name repeat what they’ve been told constantly–to just calm down and get out of your head. I’ve heard the same things so often I can practically recite them. People in particular seem to think that I can switch the tics on and off like a lamp, and that is in no way how it works. Having it mentioned routinely by other people is in no way to helpful. In fact, bringing it up is a guarantee I’ll think about it regardless of what I was thinking before. Also, no two versions of GAD or Tourette’s are created equal. Both of them manifest completely differently in different people, and assuming you know what someone is going through–with experience, or without it–is a good way to disagree.
5. What are the biggest cliches/stereotypes you’ve seen?
Where do I start? There’s the person with GAD who only has panic attacks. The person with GAD who has one specific trigger. The person with Tourette’s whose tics are vocal–bonus points if they’re commonly curse words. I get sick to death of seeing only these portrayals in fiction because all they do is reflect a complete lack of nuance. Though these may be common symptoms in some people, the truth is that the average person with Tourette’s or GAD doesn’t exist. They can manifest one to none of these commonalities, or anywhere in between. I personally have had panic attacks and certain things that tended to be triggers. That being said, I’ve also dealt with constant discomfort or nervousness in various situations without devolving into out and out anxiety attacks. And though I’ve had vocal tics–mostly quiet throat sounds–breathing abnormalities and upper body movements are much more normal for me.
Another thing that is less a stereotype and more a mindset is the idea that everyone who takes medication to help them manage their symptoms will lose their creative ability or their cognitive clarity. I’m not going to argue that medications help everyone, but I hate when people write off all medical aids because they tried one for a month and it gave them some side effects. I had a friend who legitimately tried to argue that he simply needed to spend more time meditating or praying to get rid of his anxiety, and while those things are definitely calming to some people, they can’t always correct what is essentially a chemical imbalance. I hate pointing out that I take psychiatric meds to acquaintances and having them look at me like I’m some kind of anomaly. The only truth that I know about dealing with GAD and Tourette’s is that–like with most things–a mixture of treatments/solutions/ideas is often the best way to go.
BONUS: What is your advice for writers writing diverse characters?
I’m going to reveal my type A personality in a big way here, but do research. Lots and lots of research. Read books. Read journals or magazine articles. Talk to doctors. Talk to patients. (Advice more specific to this post, I think.) Talk to people who–because of their background–view the world differently than you do. Watch movies. Watch documentaries. Meet lots and lots of people and do your best to find out how they view their own differences. Learn what they like and don’t like. Learn what makes them feel better and what scares them. Never assume there is one way to do anything or one right way to think or feel. Remember that diverse characters are people just like everyone else and focus as much as (or more!) on that, as you do on why their differences make them stand out.