Tuesday, September 18, 2018

So Your Character Has Chronic Pain ... Featuring Maddie @ Stories and Spoons

I know many people who struggle with Chronic Fatigue, so I am really thankful to have found Maddie and for her to be willing to share about her struggles, so I can better understand them and write more accurate characters in the future.

Hi! My name is Maddie and I’m 18 years old. I have Chronic Fatigue Syndrome and Chronic Pain. I am currently completing my Certificate 4 in Business and will be going to university to study History come August. I love to read, blog about reading and my life with chronic illnesses, and sew quilts in my spare time. I also love spending time with my golden retriever puppy and exploring new places when I can (especially places with lots of history). 

How does Chronic Pain physically feel? How do you think it compares to those who don’t have this?
Physically it sucks. On any given day, my pain levels are a minimum of about 6 out of 10. My pain mainly presents in my legs and my stomach, but I also get it in my joints and back quite a bit as well. Aside from the pain, I’m also very nauseous and fatigued a lot of the time. I think it feels a lot worse than people who don’t live with pain and restricts me from doing a lot of what they can do. I spent two years in a wheelchair full time because my pain had gotten to a really unmanageable point. Even though I’m doing a bit better now (after lots of rehab), every day is still rough and I still use either a wheelchair or crutches sometimes.

How do you feel about having Chronic Pain?
I have good days and hard days when it comes to accepting my pain. Some days I plod along okay and can manage it well and still get stuff done. On these days, I can make peace with it. Some days however it feels a bit too much to deal with and I have a bit of a meltdown about it. I have a good cry about how unfair it is, and then I get back to trying to manage it. 

What challenges does Chronic Pain pose?
I think one of the hardest things is trying to get the people close to me to understand. Because they can’t really see what’s going on, it’s hard for them to get that I’m actually living with pain every day, and sometimes can’t do the things that they want to do. It’s also challenging having to use mobility aids such as a wheelchair, crutches or walking stick because it’s hard to get stares from people in public. Even though I can walk, they help to reduce my pain and fatigue levels when I go out and need to get stuff done. 

Is there anything you like about having Chronic Pain?
Not really. Having pain sucks, and I would very gladly get rid of it if I could. 

Do you think your day differs from others because of Chronic Pain?
Definitely. I often moderate or ‘pace’ what I do so that I don’t make my symptoms worse, and I do a lot of planning to make sure I don’t overdo anything. I also go to lots of physio and doctors’ appointments and do physical exercises every day to help keep myself mobile. Sometimes I have to change plans because I wake up and my pain is particularly bad, which is frustrating, but I manage as best I can. 

Do you have any cultural differences between others who also have Chronic Pain and those who do not?
Not really, although I think people with Chronic Pain or Chronic Illnesses, in general, understand each other a bit more, and all the crazy stuff that goes with having an illness, which people without it might not get. 

What are some stereotypes about Chronic Pain that irk you?
I think the biggest thing would be that people often assume I use my wheelchair because I have a broken leg. This is frustrating because people just don’t understand that there is more to using a mobility aid than my legs not working. I use it because it helps reduce my pain levels and lets me do more, even though I can walk. I also find it frustrating in general that people don’t really understand chronic pain at all. Most people have never even heard of it, and it gets pretty exhausting trying to explain it to people. 

What media portrays Chronic Pain badly be it a movie, a book, or a TV show?
There isn’t much media that portrays Chronic Pain at all, but one of the only movies I’ve seen with a character with Chronic Pain was Me Before You and I didn’t enjoy how Will was portrayed. It was one of the only books/movies I’ve had to stop halfway through because I didn’t like Will’s attitude towards his pain and being in a wheelchair. He basically thought he was worthless, and as someone who’s in a similar situation, it felt like they were implying I was as well. 

What media portrays Chronic Pain well be it a movie, a book, or a TV show?
I really haven’t seen any media that portrays Chronic Pain well, unfortunately. 

Who are your top three favorite characters who have Chronic Pain in books, movies, or shows?
There really aren’t many characters who live with Chronic Pain, but one of my favorites was Kaz from Six of Crows. Kaz needs to use a walking stick because of the constant pain in his leg. I really enjoyed him as a character, because he’s learned to live with pain just like I have, but there are days when it’s really bad and he has to modify what he does. 

Thank you again, Maddie, for your candidacy.

Are you interested in participating in this project? Shoot me an email at howellvictoriagrace(a)gmail.com.
Do you have any characters that have Chronic Pain Syndrome? Did this inspire you to write a character with this illness? Do you have Chronic Pain and you have further input? Feel free to share! Do you have any questions for Maddie? Be sure to thank her!

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