Meet Grayson Schultz

Today we’d like to introduce you to Grayson Schultz. 

Alright, so thank you so much for sharing your story and insight with our readers. To kick things off, can you tell us a bit about how you got started?
When I was five years old, I began experiencing symptoms of a condition that took 8 months to get a proper diagnosis for. Even then, if it wasn’t for my family doing research through medical textbooks at the University of Oregon library, I don’t think we would have found the right culprit until it was too late as I was very ill. After finally being diagnosed with Systemic Juvenile Idiopathic Arthritis (SJIA), other chronic illnesses followed. I was pulled out of the medical system by my mother and didn’t see any medical providers from ages 14-21 when the ACA kicked in, and I could finally get insurance on my own as a college senior. I began writing about what it was like to live with an untreated chronic illness that can be fatal as a college sophomore, and that led me to a world of freelance writing, speaking, and giving presentations. This only increased when I began to take on sex ed work for those of us dealing with illness, pain, and disability in 2015. I’ve been able to speak and work with nonprofits, universities, researchers, pharmaceutical companies, household medical news outlets, and so much more to improve the way we talk about quality of life with disability/illness/pain. 

I’m sure you wouldn’t say it’s been obstacle free, but so far would you say the journey has been a fairly smooth road?
Gosh, so many struggles. 

Growing up, I lived in an abusive household. Getting out of that alone was difficult. Adding in going non-contact with my mother eight years ago and I essentially lost most of my extended family as I wasn’t sure who I could trust to keep me and my information safe. Thankfully, as the dust settled, I’ve been able to make judgments on who I can allow back into my life more and it’s been so good to reconnect. I’ve also had to go through a lot of therapy to unpack trauma-related issues and ease complex PTSD symptoms. 

There was a time period from mid-2016 until early 2019 where I had to stop full-time work outside of the home. I took on a lot of freelance work and some remote part-time gigs but was mostly jobless aside from my own projects. My health had deteriorated horribly, and it wasn’t until early 2019 when I got new diagnoses and began to be treated to the point where I could work again by April 2019. Within two months, my husband-at-the-time asked for a divorce, partially due to me having been ill and partially due to me discovering my gender identity during this time. I had to move out while not being 100% financially stable. For a while, I had to rely on friends to help make up the difference between what I made at work and what I owed for rent, insurance, etc. 

Appreciate you sharing that. What else should we know about what you do?
I run a few websites. One is called Not Standing Still’s Disease (http://notstandingstillsdisease.com) where I chronicle my journey with my SJIA as well as share information about rheumatology research, breaking news, etc. Because of my work there, I have been able to do product reviews, book reviews, write and do some work for other organizations, work with pharmaceutical companies and universities, and more. I’ve also joined OMERACT (https://omeract.org/about-us) – a group of researchers, including patients, who push for better within the field of rheumatology. 

I also run Chronic Sex (https://www.chronicsex.org) where I share more about gender identity, sexuality, illness/pain/disability and how it interferes with the ways we interact with the world, and sexual health and education. When I started CS in 2015, this wasn’t a topic that was being openly discussed. Bianca Laureano, Ph.D., CSES, MA once said that I helped pave the way for these conversations to happen more openly and often (which was like a gold star on my entire life as she does AMAZINGLY impactful work). People have shared that I’ve helped them be able to talk with their partners about how health issues were interrupting their sex lives, figure out their gender and/or sexuality, find resources to get help, and more. Here, too, I’ve been able to work with a variety of stakeholders including pharma companies, universities, researchers, therapists, and so many more folks. CS also helped me to find my own language for an understanding of my gender identity and sexuality. 

My entire life has been focused on helping others. These projects don’t even come close to paying the bills and, quite honestly, cost me money with website hosting fees, etc. But, at the end of the day, I know that this stuff helps people. 

What were you like growing up?
I only recently (2021) was diagnosed with ADHD (combined – both inattentive and hyperactive). However, looking back on me as a kid, that was definitely present. I was incredibly bubbly and full of energy. I always wanted to help other people – heck and other living beings. I would always watch where I walked so I didn’t even step on ants accidentally. After getting sick in kindergarten, the active, energy-filled nature I once had hid more as I dealt with some heavy fatigue. I’d have moments, of course, but not many. I always played by the rules set up in my home due to growing up in an abusive setting. Because of that, too, I developed a strong sense of what justice looks like – not only right and wrong but the areas of nuance that we often overlook since we’re all focused on binary thinking. I loved learning about ancient cultures, bits of trivia, and really anything to do with music and movies. 

Contact Info:

• Website: https://graysonschultz.com/
• Instagram: https://www.instagram.com/graysongoal
• Linkedin: https://www.linkedin.com/in/graysongoal/
• Twitter: http://twitter.com/graysongoal
• Other: https://chronicsex.org/

Image Credits
Rômulo Ueda
McGravin