12 hours ago
My Advocacy Bookshelf: Eczema Reads that Changed My Life
If I had to list every book that has shaped my journey as an eczema advocate, we would be here all day. Narrowing it down to just three wasn't easy, but I wanted to highlight the ones that profoundly impacted me. These books didn't just teach me something new, they shifted how I approach my own life with eczema and how I support others living with chronic conditions.
Disability Visibility by Alice Wong
I remember first reading about a book that was listed in books that help people understand their chronic illness better. I'll admit it, I thought the title was pretty catchy, too, and I always love reading essays from people regardless of the topic.
Reading Disability Visibility was a transformative experience for me. This powerful collection of essays by disabled writers offered insights that challenged my previous perspectives. It taught me that disability encompasses a vast range of experiences and highlighted how our society often imposes unnecessary challenges on disabled people.
These writings truly stood out to me. It was so incredible, I had to keep my notes open on my phone to jot down all the impactful quotes. One quote from the book that particularly resonated with me is by Liz Moore, who writes:
'People ask me, 'Have you tried yoga? Kombucha? This special water?' And I don't have the energy to explain that yes, I've tried them. I've tried crystals and healing drum circles and prayer, and everything. What I want to try is acceptance. I want to see what happens if I can simply accept myself for who I am. … '
Moore's words capture the exhausting cycle of trying countless unsolicited advice, which is all too familiar.
I found relatability with people whose stories, while different from mine, echoed familiar themes of resilience, advocacy, and self-acceptance. It challenged me to think about eczema not just as a medical condition but as a lived experience that shapes identity and community. This book helped me reclaim the narrative around my skin, giving me the courage to speak more openly about the challenges and triumphs that come with managing eczema.
The Anti-Ableist Manifesto: Smashing Stereotypes, Forging Change, and Building a Disability-Inclusive World by Tiffany Yu
Last October, I attended Chronicon in NYC, and as I walked in, a bright orange book was placed on every chair. I hadn't heard of it before, but I was instantly curious and eager to dive into its pages.
The book was written by Tiffany Yu, who shared her powerful story of resilience and advocacy. At just 9 years old, she was involved in a car accident that left her with a brachial plexus injury, resulting in permanent paralysis of her right arm. Tragically, the accident also claimed her father's life. Despite this life-altering experience, she went on to build a successful career as an investment banker at Goldman Sachs, then became a disability advocate.
Her manifesto is a bold call to action, challenging not just systemic barriers but also the way society perceives disability. This book dives into topics like workplace accommodations and the subtle everyday microaggressions people with disabilities often face. I found myself connecting deeply with the sections about how ableism intersects with chronic illness. It made me reflect on my own experiences with eczema, particularly the ways health care conversations can impact self-worth.
She teaches us that change doesn't always come in big, sweeping gestures; it's often rooted in the everyday actions of those who dare to speak up and support one another.
How to Live Well with Chronic Pain and Illness: A Mindful Guide by Toni Bernhard
This is an older book that I read some time ago, and I can't quite recall how I came across it, but I do remember how profoundly it moved me at the time. Toni Bernhard, a lifelong educator who was teaching at UC-Davis, discovered that her immune system was in overdrive due to chronic fatigue syndrome, now referred to as myalgic encephalomyelitis (ME).
Toni talked about her spiritual connection to Buddhism and how, once she got sick, she had to set that aside to focus on her health. Her book shared practical ways to cope with the unpredictability of chronic illness while nurturing a sense of calm and acceptance.
As someone living with eczema, I know firsthand how some days my skin feels like it's on fire, while other days, I barely notice the flare-ups. Reading her words was a gentle reminder to make peace with my body, even on tough days.
Managing my skin's unpredictability calls for self-compassion. Toni's insights taught me to be kinder to myself and to understand that living well doesn't always mean being symptom-free, it's about finding small moments of peace even in the midst of discomfort.
These three books have shaped how I advocate, how I heal, and hold space for others. While I continue to add to my bookshelf, these three will always hold a special place. I hope to one day contribute my own voice to the conversation by writing a book that shares my realities of living with eczema (and food and environmental allergies). Until then, I'll keep reading, learning, and advocating, one page at a time.
