About Rarely Ordinary Collection
You’ve found a space made for bodies that don’t fit the mold.
Rarely Ordinary Collection was created for people living with chronic illness, rare disease, disability, and medical complexity — and for the caregivers, family, friends, and spouses who walk beside them. We believe that survival deserves beauty, clarity, and compassion.
The Etsy shop offers a mix of thoughtfully designed physical items from jewelry, accessories, art, and clothing to medical alert cards, practical digital resources such as medical condition education PDFs, symptom trackers, appointment templates, journal prompts, and advocacy guides, along with curated support bundles including new diagnosis kits, hospital survival kits, surgery recovery kits, EDS starter pack, caregiver support bundles, and teen/children support kits. Each bundle is designed to reduce overwhelm and help you feel a little more prepared in moments that often feel anything but. All products are created by someone who lives this life, not just studies it.
Rarely Ordinary Collection also hosts a unique blog and storytelling place, Hope In Stripes, — sharing lived experiences, medical navigation, education, advocacy, tools, resources, practical support, community, language, validity, and hope for those navigating illness, grief, healing, and identity shifts.
This space exists to say:
You are not invisible.
Your body is not broken.
And you are never alone here.
Thank you for supporting a small business built from survival, resilience, and heart. 🤍
Our Mission
Rarely Ordinary Collection exists to support individuals and families navigating chronic illness, rare disease, disability, and caregiving. Through thoughtfully designed products and lived-experience storytelling, we provide practical tools, education, advocacy, and compassionate validation — helping people feel prepared, understood, and less alone in bodies and lives that work differently.
Our Vision
Our vision is a world where chronically ill and disabled lives are seen, believed, and supported — not minimized or dismissed. Rarely Ordinary Collection strives to build an inclusive community where access, dignity, and understanding are the standard, and where storytelling, education, and thoughtfully designed resources empower people to live with clarity, resilience, and hope.
Giving Back
Giving back is a core part of this work.
10% of proceeds from the Rarely Ordinary Collection Etsy Shop are donated to the Ehlers-Danlos Society to support research, education, and advocacy for those living with Ehlers-Danlos syndromes and related connective tissue disorders.
In addition, 10% of proceeds from HOPE – Hope Overcomes Pain Everytime are donated to the Lupus Foundation of America, helping fund lupus research, patient resources, and national advocacy efforts.
Every purchase directly supports awareness, education, and meaningful change for people living with chronic illness, rare disease, and invisible disabilities.
About The Creator
Baylie Phillips
Baylie Phillips is a writer, scientist, chronic illness advocate, and student researcher whose work lives at the intersection of lived experience, disability justice, and biomedical innovation. She is the author of HOPE: Hope Overcomes Pain Everytime, a raw, unflinching memoir that explores life inside chronic illness, invisible disability, grief, resilience, and the radical act of choosing to stay when survival itself becomes an everyday battle. Living with 14 chronic medical conditions, Baylie has navigated a lifetime of medical trauma, systemic dismissal, loss, and rebuilding. Through her work, she gives language to the experiences so often ignored: medical gaslighting, disability grief, identity loss, and the quiet courage it takes to keep living when the world stops seeing you.
In parallel with her advocacy and writing, Baylie is a PhD student in Materials Science and Engineering at the University of Washington, specializing in biomaterials for vascular and antiviral medical applications. Her research focuses on improving drug-eluting stents, developing bioceramic-reinforced polymer coatings, integrating biosensors for early detection of vascular failure, and engineering antiviral nanomaterials to reduce disease burden and improve patient outcomes. Her scientific work is deeply personal — shaped by her own experiences as a patient with vascular disease and implanted medical devices — and driven by a commitment to creating safer, more compassionate medical technologies.
Baylie is a National Science Foundation Graduate Research Fellow, a Barry M. Goldwater Scholar, and a Rhodes Scholarship finalist, with a record of academic excellence, interdisciplinary research, and national recognition. Beyond the lab, she is a dedicated educator, mentor, community leader, and a 2023 Butte, MT Local Hero. She has served in student government, led food insecurity initiatives, organized accessibility-focused outreach programs, mentored younger students — particularly women and students with disabilities — and worked to create more inclusive academic and professional spaces.
Her advocacy extends beyond institutions and into everyday life. Baylie is the creator of Rarely Ordinary Collection and Hope In Stripes, a platform, blog, and Etsy shop dedicated to chronic illness, rare disease, disability, and caregiving. Through essays, resources, tools, community-centered design, and physical products, Rarely Ordinary Collection exists to validate lived experience, provide support, and remind people navigating invisible battles that they are not alone, broken, or failing. Rarely Ordinary Collection and Hope In Stripes were created for those who are suffering, those who love someone who is suffering, and for a world that urgently needs to learn how to listen.
At the heart of all her work — scientific, creative, and advocacy-driven — is the same belief:
Pain deserves to be believed. Survival deserves to be witnessed. And people living with chronic illness deserve more than silence.
Baylie writes, researches, advocates, designs, and crafts not because she has overcome illness, but because she is still living inside it — choosing hope not as a feeling, but as an act of defiance.
About Baylie's Conditions
Nutcracker Syndrome (NCS)
A vascular compression disorder in which the left renal vein is compressed—most commonly between the aorta and superior mesenteric artery—leading to impaired blood outflow, flank pain, hematuria, and pelvic venous congestion.
Hypermobile Ehlers-Danlos Syndrome (hEDS)
A hereditary connective tissue disorder characterized by joint hypermobility, chronic musculoskeletal pain, joint instability, and systemic symptoms caused by abnormal collagen structure and function.
Median Arcuate Ligament Syndrome (MALS)
A condition caused by compression of the celiac artery and surrounding nerves by the median arcuate ligament of the diaphragm, resulting in abdominal pain, gastrointestinal symptoms, and autonomic dysfunction, often worsened after eating.
Postural Orthostatic Tachycardia Syndrome (POTS)
A form of autonomic dysfunction defined by an abnormal increase in heart rate upon standing, resulting in dizziness, fatigue, palpitations, brain fog, and exercise intolerance without significant blood pressure drop.
Pelvic Congestion Syndrome (PCS)
A chronic venous disorder caused by dilated, refluxing pelvic veins that lead to persistent pelvic pain, pressure, and worsening symptoms with prolonged standing or hormonal changes.
May-Thurner Syndrome (MTS)
A vascular condition in which the right iliac artery compresses the left iliac vein against the spine, increasing the risk of venous obstruction, pelvic pain, swelling, and deep vein thrombosis.
Lupus
A chronic autoimmune disease in which the immune system attacks healthy tissues, causing widespread inflammation that can affect joints, skin, kidneys, blood vessels, and internal organs.
Left Ovarian Veinous Reflux Disorder
A venous insufficiency condition where the left ovarian vein fails to maintain proper blood flow direction, resulting in venous dilation, pelvic pain, and contribution to pelvic congestion.
Raynaud's Phenomenon
A vascular condition marked by episodic vasospasm of the small blood vessels, typically in the fingers and toes, causing color changes, numbness, pain, and sensitivity to cold or stress.
Polyarthritis
An inflammatory condition involving five or more joints simultaneously, leading to pain, swelling, stiffness, and reduced mobility, often associated with autoimmune or systemic disease.
Bertolotti's Syndrome
A congenital spinal condition in which an enlarged transverse process of the lowest lumbar vertebra partially or fully fuses with the sacrum, often causing chronic lower back pain and nerve irritation.
Orthostatic Hypotension
Drop in blood pressure because the body fails to adequately compensate for gravity, leading to symptoms like dizziness, lightheadedness, blurred vision, weakness, or fainting (syncope) due to reduced blood flow to the brain.
Fibromyalgia
A chronic pain disorder characterized by widespread musculoskeletal pain, heightened pain sensitivity, fatigue, sleep disturbance, and cognitive dysfunction due to altered central pain processing.
Medical Post-Traumatic Stress Disorder (M-PTSD)
A trauma-related psychological condition resulting from distressing or life-threatening medical experiences, characterized by hypervigilance, anxiety, intrusive memories, and avoidance related to healthcare settings.
Baylie's Books
Hope Overcomes Pain Everytime: A Short Memoir of a Girl with 14 Disorders
By Baylie Phillips
Invisible Light Within: 365 Days of Guided Reflection for the Chronically Ill
By Baylie Phillips
HOPE is a deeply personal, raw, and resilient memoir chronicling the journey of a young woman navigating life with fourteen complex and often invisible chronic illnesses. From the sudden onset of debilitating pain and rare diagnoses to life-threatening complications, the author lays out bare the physical, emotional, and systemic battles of surviving in a body that seems to break more than it heals.
Structured in five powerful parts — from the initial unraveling of her health, through the isolation and grief of chronic illness, and ultimately toward reinvention, resilience, and purpose — the memoir invites readers into both the science and the soul of survival.
With lyrical prose, fierce honesty, and piercing advocacy, she explores themes of medical gaslighting, the myth of “looking fine,” what it means to lose the life you planned, and how to find new dreams in the rubble. Through poetry, science, self-advocacy, and a refusal to give up, Phillips reclaims her voice and dares readers to believe in a softer kind of strength — one built not in spite of pain, but within it.
This is not just a book about illness. It’s a testament to becoming — to living fully, even when your body tells you not to. It’s a love letter to everyone who’s ever felt unheard in a doctor’s office, unseen in a classroom, or unworthy in their own skin. HOPE reminds us that surviving is not passive — it’s an act of wild, radical, everyday courage.
Living with chronic illness means surviving things no one else can see. Invisible Light Within is a year-long guided journal created specifically for people living with chronic illness, disability, pain, fatigue, and medical trauma. With 365 gentle, validating prompts, this book offers a safe place to process grief, identity shifts, survival, hope, and the long in-between—one day at a time.
This is not a positivity journal. This is not about fixing yourself. This is about being seen. Inside you’ll find:
365 thoughtfully written prompts (one per day)
11 themed sections, including diagnosis, grief, medical systems, emotional survival, relationships, identity, purpose, faith, self-worth, and everyday courage
Space to reflect on pain without minimizing it
Language for experiences that are often dismissed or ignored
Perfect for readers who:
Live with chronic illness or disability
Are navigating medical burnout or trauma
Are grieving their “before” life
Want reflection without pressure or timelines
Invisible Light Within meets you where you are—and reminds you that even when the world can’t see your fight, your story still matters.
Rarely Ordinary Collection
Gentle strength, rare beauty, and advocacy-inspired design.
rarelyordinarycollection@gmail.com
© 2026 Rarely Ordinary Collection. All rights reserved.
Rarely Ordinary Collection is committed to providing an accessible experience for all visitors. If you encounter barriers, please contact us so we can improve.