April 20, 2020

Interview With Author Allison Alexander About Her New Book, IBS, How to Write Characters With Disabilities, and the Importance of New Ways to Talk to Each Other

Website/Blog, Twitter, & Instagram Handle

www.aealexander.com, @allisonexander

Name *

Allison Alexander

Disorder Info

What is your disorder? *

Irritable Bowel Syndrome (severe), chronic nausea, Cytolytic vaginosis

At what age did your disorder become a daily issue? *

Who were you before your illness became debilitating? *

I went through various stages with my chronic illnesses. My IBS started up around age 8, and though it caused incredible chronic pain I was often able to push through and attend stuff anyway (like school). I was the person who said "yes" to everything as a young adult. I got asked to do a lot of music stuff because I played piano, graphic design work because I was artistic, organize events because I was good at it, etc. Then around university, my illnesses took a turn for the worse (more things, like chronic nausea, popped up) and I just struggled to go to class. I pretty much became a hermit. I got a 9-5 job after I graduated and it destroyed me because I just couldn't make it every day. I kept missing more and more days. The cytolytic vaginosis came along a couple years ago. Every time a new health problem pops up I'm worried I lose a little bit of myself, but I've been coming to terms with the fact that I'm not defined by what I can do.

What would you do if you were not dealing with your disorder and/or disability? *

I'm not sure. I may have considered a more demanding degree/job in medicine or science, though I suspect it would have still been something in the arts. I don't think my love of writing and editing is necessarily tied to my illness, though my appreciation for working from home definitely is. I would travel more if I wasn't sick.

What would you like people to know about your daily life? *

I have to rest a lot in preparation for doing anything that involves leaving the house, even something simple like going grocery shopping. (I like to use the analogy of spell slots in Dungeons and Dragons, but spoon theory works too).

What would make living and moving in the world easier for you? *

Barring healing, people who understand that when I cancel on them, it's not because I don't want to be there (and I am lucky to have people like this in my life).

Do you have any life hacks? *

The most important life hack I can recommend is ditching the guilt you feel when you can't manage the same stuff others can.

What kind of support do you get from family or friends? *

I have incredible support from friends and family who are very understanding and willing to accommodate. My husband is also amazing, taking care of chores when I can't do them and going to appointments with me.

Have you ever had someone, or a medical professional, not believe you have an invisible illness because of your appearance and if so are there any examples that stand out? *

Yes, I have a super calm personality even when I'm in incredible pain. I once waited in an emergency room for nine hours in intense pain and all they'd give me was an advil (I suspect this had to do with me being female). I've also had doctors dismiss my symptoms because I've had some weird problems that don't show up on tests (like IBS). They're diagnoses of exclusion, which can be difficult for medical professionals to take seriously or know what to do with. My gynecologist also dismissed incredible pain I have during sex as normal.

How has your chronic illness affected your relationships? *

It definitely drew me away from people who didn't try to understand and into communities of people who are willing to accommodate me. I've made a lot of friendships through video gaming, because that's something I don't have to leave the house for. I also struggled with dating for years because I didn't feel good enough (why wouldn't a guy choose someone healthy over me?) and also, dating is EXHAUSTING. I had several bad experiences and remained single during my teenage years and most of my twenties. Then, luckily enough, I said yes to a blind date in 2017, and married the guy in 2018.

Is there anything you are afraid to tell people in your life? *

I mean, I wrote a whole book full of embarrassing personal details about my life and illness, so I guess that fear is gone, haha. I was definitely afraid to talk about anything personal, including illness, for a long time (until mid-twenties). At some point, I realized sharing my struggles with others made things easier for me; I felt less alone.

What is your best coping mechanism? *

Resting when I need to, saying no when I need to, letting go of guilt.

What are you the most concerned about and the most hopeful for in the future? *

My biggest concern is more chronic health problems cropping up as I get older. They're just going to keep piling on! I'm hopeful because I can still find peace and meaning in life even with a chronic illness.

What makes you energized or enthusiastic? What drains you?

I get energized by doing creative stuff like art and writing. I am introvert, so leaving the house is already draining even without the illness.

Any favorite books or shows?

How long do you have??? I'm a huge sci-fi and fantasy nerd. I love Harry Potter, The Lord of the Rings, anything by Diana Wynne Jones. Firefly, Doctor Who, Stargate, The Clone Wars, The IT Crowd, The Office, Parks and Rec... I could go on.

What is the hardest and/or best lesson your condition has taught you?

I am not defined by what I am able to do or not do.

What is the best purchase under $100 that helped your life

Some of the best purchases I've made for my chronic illness have been video games. In general, they help to distract me from pain. There are also some specific ones that were really great for my anxiety and depression. Also, I didn't buy this (my mom made it), but something I use all the time is one of those rice bags you can put in the microwave to warm you up. I put it on my stomach when I have cramps or on my feet when I'm chilled.

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