Tuesday, November 1, 2016

So Your Character Has Fibromyalgia ... Featuring Sky @ Further Up and Further In

When I was younger, I'd seen commercials about fibromyalgia. It wasn't until I found out someone close to me had it that I started looking into it a bit more. Furthermore, my character Elasa also has this condition. For those of your who don't know according to Wikipedia, fibromyalgia is "is a medical condition characterised by chronic widespread pain and a heightened pain response to pressure. Other symptoms include feeling tired to a degree that normal activities are affected, sleep problems, and troubles with memory. Some people also report restless legs syndrome, bowel or bladder problems, numbness and tingling, and sensitivity to noise, lights or temperature. Fibromyalgia is frequently associated with depression, anxiety, and posttraumatic stress disorder. Other types of chronic pain are also frequently present."

So Your Character Is ... is an on going series where I interview or talk about myself about different people groups, countries, etc. for writing more accurate characters. Sky Destrian from Further Up and Further In has fibromyalgia and is gracious enough to let me interview her for both the blog and my own personal character research.

Please welcome Sky!

(Images aren't mine) 

Sky is a 20-year-old writer and graphic designer from Colorado. In addition to creative pursuits, Sky enjoys consuming stories in any form, especially TV shows. Her favorite stories usually involve superheroes and light triumphing over darkness. Both of these themes have encouraged her in the midst of her struggles with fibromyalgia, PCOS, and anxiety. If you need her, she can most likely be found coming up with her next plot twist, searching for a way to make fictional characters real, or attempting to attain Tony Stark-like wit.

How does your fibromyalgia physically feel? How do you think it compares to those who don’t have this?
Everyone’s fibromyalgia is different, but my fibromyalgia manifests in two things: fatigue and pain. The fatigue is pretty relentless, and it can be unwarranted--while it usually flares because I did something “big,” like attending an event, sometimes I can feel tired for no reason at all. The same goes for the pain. I have various types of pain--muscle pain, joint pain, and random, shooting nerve pain that I can only describe as “prickly.” The pain can be triggered by weather (an incoming storm or a low in barometric pressure especially) or physical exertion, but sometimes it’s random. (For example, right now my left thumb really hurts every time I hit the space bar for no reason.)

In addition to fibromyalgia, I have chronic migraines, though it’s hard to tell if those are because of fibromyalgia or a separate thing. I also have PCOS, so they all just play into each other.

I think having fibromyalgia differs from people who are healthy because a lot of people don’t have pain or fatigue on a daily basis. A lot of people do experience those things, and I don’t want to discredit that. However, my pain and fatigue are sometimes more amplified than other people’s. For example, it’s rare that I’m not hurting somewhere, and even five minutes of physical exertion can wear me out.

How do you feel about your fibromyalgia?
It’s frustrating, but at the same time, I’ve had to learn to live with it. It takes a lot of energy to get upset about fibromyalgia--energy I don’t have. I’m not sure if I’ve accepted my fibromyalgia or if I’m just apathetic about it. It’s just become part of my daily life, and I haven’t ever really known what a “healthy” body is supposed to feel like. I know that seems kind of depressing, but it just means that this is my normal. I haven’t known any differently. It’s just my life.

That doesn’t mean I don’t get mad though--I do. Sometimes I grieve all the things I don’t think I will get to experience and all the things I feel that I’ve lost. It really depends on the day. But for the most part, fibromyalgia and I somehow manage to coexist (not really peacefully, since it’s not exactly nice to me, but I’ll take what I can get).

What challenges does your fibromyalgia pose?
Quite a few, and I’m not even sure where to begin. It was really difficult for me to finish school, and I have to limit how much I do certain activities such as work or social outings. It’s difficult to find a job that’s part-time enough and won’t aggravate my physical health. I haven’t been able to have a lot of “normal” experiences, like working, going to college, or even getting my driver’s license (though I’m working on the last one). 

The reason for this is that I have limited amounts of energy, and if I do “too much,” I will flare badly for the next few days with both pain and fatigue--sometimes it will be hard for me to get out of bed. Any physical activity (going up the stairs, walking more than five feet, dancing, etc.) is extremely difficult because of the pain and exhaustion it causes. I can do those things, but I have to power through the pain to do them. Then I have to pay the price later with pain, body aches, and exhaustion. In addition to all that, there’s other random symptoms, like insomnia, anxiety, depression, and mood swings. 

Is there anything you like about your fibromyalgia?
I really feel that fibromyalgia has made me who I am. Without it, I would probably be a different person. Because I couldn’t go out and socialize much when I was younger, I spent much of my time indoors: reading, writing, and blogging. I lived vicariously through writing my novels (and I still do). 

If I didn’t have fibromyalgia, I don’t know if I’d be as good a writer or even be a writer at all. I probably wouldn’t have read all the books I have or watched all the shows I’ve watched, and I wouldn’t be in love with approximately 4,607 fictional characters. I genuinely feel like I would be missing a lot if I didn’t have fibromyalgia. 

I already am missing a lot in the outside world, but instead, I made my own world, my own reality. A reality filled with daydreams, music, stories I love, my family, friends, and every possible positive experience I can find even amidst the pain. I don’t see the world the same way as other people. But my world is rich, it’s beautiful, it’s mine. And I’m okay with that.

Do you think your day differs from others because of your fibromyalgia?
Yes, definitely, because I have a limited amount of energy and ability to get things done. I often have to lay down or sit down in the middle of tasks more than other people, and sometimes I can’t do things at all. My day requires a bit more consideration--I can’t just do things without considering whether I feel up to it or not. I have to carefully think about whether I’m able to participate in social activities or errands--if I don’t have the energy for it and I know it will flare me, I can’t do it. 

This can even extend to simple things like getting ready for the day--for example, often I don’t wear make up because I need to conserve my energy for other tasks I have to do later. One helpful analogy is the spoon theory. You can read it here. I have to measure out my spoons for the day, so that’s the biggest way my day differs from others. 

Do you have any cultural differences between others who also have your fibromyalgia and those who do not?
Yes. It’s very hard to relate to people sometimes because it can feel like I’m different from them. For example, people my age usually have jobs and cars, whereas I’m just trying to remember to take my meds on time (I usually don’t remember; phone reminders and timers are often involved). There’s a bit of a dissonance between myself and what is considered “normal,” and that can make it hard to get to know people and relate to them. 

A lot of people actually don’t understand fibromyalgia or what it’s like, and they can’t quite wrap their minds around it. Often it’s something I don’t even bring up unless prompted because there are so few people who understand. It’s rare for me to find people who do, but I hold tightly onto those amazing people when I find them. A lot of my friendships are online. I have found so many amazing people, even though they live thousands of miles away.

What are some stereotypes about your fibromyalgia that irk you?
Well... how much time do you have? ;)

“But you don’t look sick” is my favorite one. People tend to think that if you look healthy, you are healthy, which just isn’t the case. I often put on a very good face for people--I’ve learned to fake it. Even when I’m feeling terrible, I can still be smiling and acting like everything’s fine. I honestly don’t know why I do this, but it’s something I learned to do really early on. So of course, people don’t think I look sick, which I do understand. I don’t look sick. But there’s more to me than meets the eye.

The other things that irk me are people who assume I’m lazy, that I’m just doing this for attention, or that it’s all in my head. 

What media portrays your fibromyalgia badly be it a movie, a book, or a TV show?
Honestly... I have never, ever seen a character with fibromyalgia. And that is something I would really love to change. Chronic illnesses are extremely underrepresented, and it would make me feel so happy to see a character with my actual same diagnosis.

However, because of my fibromyalgia, I am disabled, and I can speak to that. While I can’t think of any specific examples, one of the things I hate the most is when a character with a disability is magically cured. Life doesn’t usually work like that. I might just be bitter, but it’s hard for me when people with disabilities get healed and don’t have to deal with their disabilities anymore. It’s just not realistic. I also would like more media where disabilities were not portrayed as something to just “get over” but as a normal part of the character’s life.

What media portrays your fibromyalgia well be it a movie, a book, or a TV show?
Though I’ve never seen a character with fibromyalgia, I do have the overarching issue of pain. I haven’t seen much of House, but from what I have seen, I relate to the main character a lot. Mostly because I totally get the instinct of being grumpy and surly when you’re in pain. 

While I try to keep it positive, pain is just annoying, and it can make you feel like being rude to everyone around you (unfortunately!). I feel that House portrays that well and realistically, even though it’s definitely not the most positive attitude to have.

Who are your top three favorite characters who also have fibromyalgia in books, movies, or shows?
One of the greatest portrayals of chronic pain I’ve ever seen is Sophie from the book Far From You by Tess Sharpe. Sophie had been in a car accident which caused permanent pain, and I related so much to her. The book was written with a lot of vulnerability and accuracy, and it made me feel very understood--Sophie had pain when getting off the ground, for example. Sophie and I weren’t exactly the same physically, but it was so refreshing to read someone like me--someone who has pain while trying to move around, someone who just has pain woven into their narrative like I do.

Other than that, I don’t have any favorite characters with fibromyalgia. But I’ll be looking for them.

Thank you again, Sky! This is such a wealth of information! Thanks for reading!

Are you interested in participating in this project? Shoot me an email at howellvictoriagrace(a)gmail.com.

Do you have any characters with fibromyalgia? Did this inspire you to write a character with fibromyalgia? Do you have fibromyalgia and you have further input? Feel free to share! Do you have any questions for Sky? Be sure to thank her!

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