Your New Lupus Friend
When I was diagnosed with lupus, searching for stories like mine was frustrating. I needed approachable, easy to understand information from trusted experts that I could actually use.
My family and friends didn’t know exactly how to help or what to say. That’s why I’ve written the badass warrior lupus advocate book, The Girlfriend’s Guide to Lupus.
Highlights from the latest scientific articles on lupus, the expert from that great podcast, encouragement from the group chat, and vital knowledge and baby steps to take that help living happier, healthier lives.This lupus book is designed to give you the tools and support you need—just like you’d get from your smartest, most helpful girlfriends, if they were living with lupus too.
Hi, I’m Amanda Chay, one of your most helpful new friends living with lupus.
I was born and raised in Cincinnati, Ohio. A feisty youngster, I started speaking up against injustices early on. My first editorial was a feminist piece about the unfair girls dress code at my own Fairfield Middle School, and the detentions I endured for rebelling against it. I also played soccer, ran track, and devoured books on health trends while laying on the couch eating BBQ chips.
Ever since I can remember, I’ve felt driven and pushed myself harder for longer, wanting to achieve more and become better.
This led me to a career in the healthcare industry as a national sales direct and business owner helping people live less stressful, healthier, and more energized lives with my training and retreats at Wonderment.
For over twenty years, I thought of myself as a healthy person. That was me, happily teaching group fitness and yoga classes while wearing brightly-colored spandex outfits.
From the outside, you could look at me and see my hardcore dedication to health and fitness, a fulfilling career, my hottie husband, and two wonderful daughters. But that’s the thing, isn’t it?
Autoimmune disorders are an invisible illness.
My first autoimmune disease diagnosis was Sjogren’s disorder in 2013. Honestly, I was too stubborn and too proud to make any changes with this first diagnosis. I resisted taking the prescribed medication and fought the rheumatologist on how to best manage my disease. Pretending it was a temporary illness that would get better, and wasn’t going to affect me for long.
But my Sjogren’s disorder pain didn’t stop. It grew worse—and I knew something major was wrong. I received the official diagnosis of lupus in 2021, although I’ve had symptoms for over twenty years. Systemic lupus erythematosus (SLE), to be exact.
Maybe this is where you’re at with a lupus diagnosis. Or someone you love is in pain, feeling lost and struggling.
When I got my lupus diagnosis, I was in pain and felt ENRAGED. What the hell universe?!
After two decades of fitness classes, following the latest health trends, and working out like a maniac, how could I have a chronic disease? It wasn’t fair. How could I deal with being sick forever?
Seriously…how were people coping with this? I joined every lupus Facebook group and lupus Reddit group, every online forum and in-person meet up that I could find. Listening to them and reading their stories night after night, I searched for others like me. I thought I was healthy, but still wound up with this chronic illness.
Soon enough, I came to the humbling realization that even though I was experiencing major issues and was in pain every day, others were struggling and far worse off than me. This was the perspective I needed to redirect my focus.
What could I do to help create more good lupus days than bad ones?
It was time to get down to business. Learning about how to live better with lupus became my new obsession.
This journey started by sifting through and gathering the most up-to-date lupus information available. Every free moment was spent compiling information from experts on lupus, studying autoimmune diseases, and the impacts of nutrition and exercise. I devoured medical journals and clinical trials, looking for a glimpse into what my future with lupus had in store.
As hobbies go, researching lupus was downright depressing. It wasn’t pretty seeing so many bleak statistics or minor mentions of what to expect when living with an autoimmune disorder. There was so much negativity out there!
Taking control of my health allowed me to become the biggest, most badass living with lupus advocate that I could be.
Know that you aren’t alone in your journey. I’m your new lupus friend, and I’m right here with you. Cheering you on.
In this book, The Girlfriend’s Guide to Lupus, you get an approachable guide to living with lupus. Let me say from the beginning that this isn’t an endless list of stuff to try, and you don’t have to drive yourself nuts doing everything!
It’s your health and your choice, and it wasn’t just one quick tip or lifestyle change that made a difference for me. I’ve included what I found vital and suggest what the science says may work, but your mileage may vary. Take what you need to better understand how lupus impacts your body and you can better manage your symptoms.
It took a serious mindset shift combined with the scientific knowledge and strategies I learned that has made all the difference for me over the past decade. My journey has seen my quality of life improving with each small step. I want to share these insights into living with lupus with other women experiencing struggles like I did.
Perhaps your story is similar to mine. You know what it means to lose part of your health to lupus and the value of keeping and maintaining what wellness you have left. But how? If you think living every day with lupus is scary and overwhelming, I totally understand. I was there myself.
A lupus diagnosis doesn’t define you. Or me. I’m out here living my life, because having an autoimmune disorder isn’t even close to the most interesting thing about me! Let me share a few things, since we’re becoming such good friends:
- Member of the University of North Carolina Lupus Stakeholder Advisory Board
- Lupus Foundation of American external affairs committee member for NC
- Clinical lab rat in two lupus trials
- Hold Master’s degree in Counseling
- Role model alert: I’ve been a Girl Scout leader, soccer coach, and a Big Sister
- Donated my lupus brain to Harvard science upon my death
Making this list started out as an exercise in appreciating the journey I’ve taken so far. By taking control of my health and living with lupus, I know there’s even more to look forward to in the future.
So get The Girlfriend’s Guide to Lupus in September 2023-pretty please and thank you!
Share your list and tag @amandaechay #livingwithlupus or email me your list! I read every single one, pinkie promise.