According to the CDC, invisible illnesses affect an estimated 10% of the 61 million Americans who deal with a physical or mental ailment that limits their movements or senses. And while a quarter of American adults have a condition that can be considered a disability, only a fraction use visible supports such as a cane or wheelchair, meaning most don’t appear disabled, according to a 2021 paper in the AMA Journal of Ethics, as reported by Harvard Medical School.
So how do we, as a society, collectively work to become better advocates in supporting those with visible and invisible illnesses? This is a question that could be answered in numerous ways. For author and entrepreneur Amanda Chay, her solution is to share her personal story, write a book, and use humor as a way to make the information she shares relatable and not overwhelming. Amanda’s new book ‘The Girlfriend’s Guide to Lupus‘ is a self-help book for women who feel scared and alone with their Lupus diagnosis. It was released in time for Invisible Disabilities Awareness Week, observed between October 17–23, 2023.
Amanda’s long battle with lupus now spans two decades, which she describes on her website as driving her “bonkers”. However, her experience has fueled her passion for helping other women suffering from the disease as well as others who are dealing with different invisible illnesses that can wreak the same emotional havoc. Written with a lighthearted and humorous approach to comprehensively describe the realities of lupus, the book is a fantastic resource not only for those diagnosed with lupus and looking for answers but also for those who care for them.
With a master’s degree in counseling and as the owner of a stress reduction and mindfulness training company, Amanda brings a wealth of expertise to her work. As an entrepreneur, she is a lifelong health nut who has helped countless businesses and individuals put their health first. As a member of the University of North Carolina Lupus Stakeholder Advisory Board and a Lupus Foundation of American external affairs committee member for NC, this is her life work.
Ahead of Lupus Awareness Month in May 2024, we wanted to learn more about Amanda’s journey, how we can become better advocates, and how we can do a better job of affirming and supporting those with invisible illnesses and disabilities.
Congrats on the recent release of your book! What made you want to write this?
Thank you! When I got the official lupus diagnosis, it plunged me into a dark and lonely space. I felt like a castaway, knowing no one with this disease. While my loved ones were supportive, their uncertainty on how to assist me spurred a mission. I decided to pen the book I desperately wished existed at the time of my diagnosis—a guide infused with understanding and practical health advice.
In ‘The Girlfriend’s Guide to Lupus’, you share your personal story and are very vulnerable about the struggles you have faced. How easy or difficult was it to be this open?
Sharing my mistakes and screw-ups in this book was, to put it mildly, a humbling experience. I wanted people to understand that it’s perfectly okay to acknowledge where you can improve and still stumble along the way. We’re fallible humans, and it’s crucial to extend ourselves a bit of grace when we miss the mark.
The intriguing part was how challenging it was to embrace vulnerability. Many times, tears flowed as I typed, but once those words were out, they lost some of their power.
Your book was released ahead of Invisible Disabilities Awareness Week in 2023. Can you break down what an ‘invisible disability’ is for those who are unfamiliar, and why it is important to talk about them?
Invisible disabilities cover a wide range of conditions that seriously impact daily life but fly under the radar. Think neurological conditions, cancer, diabetes, chronic pain, anxiety—you name it.
But here’s the kicker—lots of folks dealing with these invisible challenges suffer in silence. It’s like our culture has this spotlight on visible pain, and the rest gets overlooked. We’ve got to get it, though: just because you can’t see the struggle doesn’t mean it isn’t real. These folks need our understanding and support too, big time.
The book is not only for those who have Lupus, but for the people who are caring for someone with Lupus or know someone with it. What do you want others to know about Lupus?
Supporting your loved one with lupus is absolutely crucial, and the most powerful way to do this is just by listening. Resist the urge to play doctor or share every remedy you’ve heard of. The reality is, you can’t fix her health problems. What she needs most is your compassion and validation, and that starts by genuinely listening to understand life from her perspective. The battle against lupus is in her hands, and feeling supported and accepted in whatever she’s going through makes all the difference.
For everyone else, it’s important to be aware that lupus is an incurable, chronic autoimmune disease where the body turns against itself, causing significant damage to multiple areas and even death. It’s a tough nut to crack when it comes to diagnosis, challenging to treat, and living with it is no walk in the park. Understanding the gravity of the situation can go a long way in fostering empathy and support.
What have been the most frustrating aspects of your journey with Lupus so far, and where do you draw strength from to get through the tough times?
The finality of lupus weighs heavy on me at times. While science is fighting for a cure, the reality is that it will stick around longer than a bright tattoo.
And sure, lupus has robbed me of a part of my health, but thankfully I still have control over what remains. It’s all about intentionality, shaping my life, and carefully choosing who and what I invite in. My daily habits play a crucial role, as does prioritizing my mental health.
What are some of the experiences throughout your journey that have empowered you or given you hope for change in the way society cares for people with Lupus?
Participating in interviews, like this one, allows me to make a positive impact because society still grapples with a lack of understanding about what lupus truly is and the significant role it plays in people’s lives.
I’ve had the honor of standing on Capitol Hill as a lupus advocate, serving on committees and patient advocacy boards to champion patients’ rights. Speaking at lupus conferences and events has been another avenue, all with the singular focus of sharing my story and truths, in the hopes that it inspires others and fosters a greater sense of understanding.
There is a lot of perhaps well-meaning, but harmful messages around disabilities that often go viral on social media. What are some of these narratives or messages we need to be aware of?
I’m not a big fan of positivity as the be-all-end-all for anyone suffering. The clichéd “hang in there” and “just stay positive” often feel distant and unsympathetic. Similarly, suggesting quick fixes like chiropractors, diets, or yoga can come off as insensitive and demeaning, as if implying you know better than the person in pain.
Let’s also be cautious about assuming we understand someone else’s feelings. Unless we’ve walked in their shoes, we can’t truly grasp the weight of their struggles. That’s where compassion and empathy step in, acting like a warm hug after the loss of a beloved pet.
As a society, we can certainly strive for better.
You often use humor throughout your book as a way to make the stories and advice more relatable. How can humor enable connection to topics that might otherwise feel overwhelming or difficult?
Are you talking about my idea of an orgasm a day keeps the rheumatologist away? Basically, I wanted to take a serious condition and lighted the load because it’s not always doom and gloom. Also, they say “laughter is the best medicine,” right? It’s good for your emotional health and mental health too.
I love humor! It’s my go-to for shows and books too. Plus, being able to laugh at myself? That’s the secret sauce to not taking life too seriously.
Can you tell us about sharing this journey with your daughter, and how you navigate Lupus as a patient AND parent?
Sharing a chronic disease with my daughter wasn’t on my wish list, yet it’s a unique bond that ties us together. She’s not just my daughter; she’s my lupus bestie! It’s like having a built-in companion on this wild journey.
To navigate this dual role, I lean on education and self-awareness, carving out boundaries to protect my energy and health. It’s about finding that delicate balance and embracing the fact that I’ve got someone right by my side, sharing the ups and downs of the lupus rollercoaster.
You write on your website that Lupus doesn’t define you. Can you describe how YOU define yourself, and how you want to be known in the world?
What a deep question! At my very core, I am a lover, a creative soul who is driven by passion and courage. I hold firm to the belief in doing what’s best and contributing what I can to make this pretty cool world a better place.
‘The Girlfriend’s Guide to Lupus‘ is out now! You can learn more about Amanda Chay’s work on her website, and follow her on TikTok, Instagram and subscribe to her Youtube Channel.
