DiversifYA: Ava Jae

Today, I’m super excited to welcome the wonderful Ava Jae to the blog! Ava is a YA and NA writer, an Assistant Editor at Entangled Publishing, and is represented by Louise Fury of The Bent Agency. Her YA Sci-Fi debut, BEYOND THE RED, is releasing March 2016 from Sky Pony Press. When she’s not writing about kissing, superpowers, explosions, and aliens, you can find her with her nose buried in a book, nerding out over the latest X-Men news, or hanging out on her blog, Twitter, Facebook, tumblr, Goodreads, Instagram, or YouTube channel.

1. How do you identify yourself?I don’t know? At this point in my life, I still struggle with labels. I’m a third-generation white Latina (grandparents are Cuban and Mexican) who is frequently mistaken for Italian. I’m an anxiety-prone writer with memories of rituals and panic attacks who was never officially diagnosed. I’m a twenty-something girl with Rheumatoid Arthritis and Hashimoto’s Thyroiditis—which are both chronic (incurable) autoimmune diseases. If you ask my school, where I’m registered with the Disability Center, I suppose they’d say I was disabled. If you ask my Occupational Therapist, she’d say I wasn’t (at least, not right now).

I’m confusing, I guess. But I’m me.

2. What did it feel like growing up with chronic illnesses?

Well, I didn’t actually grow up chronically ill—I was diagnosed when I was twenty and symptoms started a year before that. But that in itself was actually really hard because for me at least, the illnesses and diagnoses were so sudden and unexpected that I had this really long mourning period of my healthy self, if that makes sense. I don’t have autoimmune diseases or any major illnesses in my historically healthy family, so my diagnoses felt like some kind of really horrible joke.

The hard part, for me, was getting used to being chronically ill—emotionally, physically and psychologically. It was really hard to let go of the idea of being healthy and accept that these illnesses weren’t going away. Some days I’m still not over it even though it’s been a while since that initial diagnosis.

3. What are the biggest challenges? Conversely, what are the quirks/perks?

The unpredictability is the hardest part, for me. I frequently feel like I can’t trust my body—I have good days and bad days and the bad days often come without warning. I literally don’t remember what it’s like to get through a day without any kind of pain, which sucks, and it’s scary whenever I get a new achy joint or an especially bad spot starts to swell up and hurt more than usual.

Beyond the physical thing, being chronically ill can take a pretty heavy emotional toll. It gets tiring not to be able to do things you used to be able to do, or have difficulty doing something that you used to take for granted. It can also be hard to interact with people who don’t understand they’re being unintentionally hurtful about it, and when you’re young and chronically ill it can be scary to think about how it’s going to affect the rest of your life.The only perk I can think of was a temporary one: I’m on a very restrictive diet to try to control my symptoms as much as possible, so when I was living on campus at college, the cooks made meals for me specially, which was pretty cool (and really delicious). Though even that had its downsides with occasional dirty looks from other students and having kids tell me I was “so lucky” to be sick so I could get special meals. As if.

4. What do you wish people knew about chronic illness?

Anyone at any age can get chronically ill, even if they have healthy family histories, even if they’ve been very healthy for most of their lives, even if they’ve never smoked, or drank excessively, or made poor health choices. I can’t tell you how many times I’ve had someone tell me I was “too young” to have arthritis (evidently not!) and it is so, so very exhausting.

I also wish people knew just how unpredictable chronic illnesses often are. I have days where I feel mostly fine and get can through the day appearing completely healthy with few visible issues. Other days I’ll have a bad flare and limp across campus because my knee has swollen up, or I’ll barely be able to move one of my arms because my shoulder hurts with the slightest shift. But just because I was limping Monday and fine Tuesday and limping again Wednesday doesn’t mean I’m faking. Flares come and go, often with little warning, and can last several days or several weeks or even longer. Trying to predict can be really hard and sometimes impossible.

Finally, don’t assume that just because someone looks fine means that they are fine. There are a host of invisible illnesses, disorders, and disabilities and it can be very frustrating to see people get accusatory when someone who looks fine doesn’t act fine.

5. What are the biggest cliches/stereotypes you’ve seen?

So honestly, clichés and stereotypes exist because of poor representation, but I rarely ever see any representation at all. I’ve only just recently started to see books with chronically ill characters, and though I haven’t had the chance to read them yet, I’m very excited to see them because quite frankly it’s very difficult to find representation of chronically ill people.

But I suppose in terms of misconceptions, the biggest one I’ve seen for my particular set of illnesses is that people think rheumatoid arthritis is the same as osteoarthritis—it’s not. Osteoarthritis is the arthritis the elderly frequently get that’s caused by the wear and tear of joints. Rheumatoid arthritis is an autoimmune disease that anyone can get (though it does frequently hit people who middle-aged and older) that’s basically caused by your immune system attacking your joints, the lining between your joints, and, occasionally, organs. It’s a very different animal and not usually the arthritis your grandparents have.

BONUS: What is your advice for writers writing diverse characters?

Get outside feedback! Seriously. Whether you’re part of the community you’re representing or not (and especially if not), please, please, please get feedback from people who have real-life experience with whatever you’re representing. Even if you are from the community, one person’s experience is not everyone’s experience and it can be really eye-opening to see how different people deal with and experience similar circumstances. 

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