Living with a chronic illness in a world quick to judge can feel like navigating a minefield of unsolicited advice and misguided comments. From “you don’t look sick” to “just pray more,” the words of others often add an extra layer of exhaustion to an already challenging journey.
Enter Marie Ciampa’s bold, hilarious, and deeply honest book, The Shit People Say! What Not to Say to People with Chronic Illness. This raw memoir recounts the absurdity of remarks thrown at someone with a systemic autoimmune disorder, ADHD, and autism and offers understanding, self-advocacy, and finding humor in the mess.
Ciampa kicks off with a dedication to “the people who never learned to keep their mouth shut,” setting a cheeky, unapologetic tone that carries through every page. Her story begins at fifteen, when joint pain and seizures upended her life, only to be dismissed by a smug psychologist named Steve, who spun her in a chair to “test” her fainting. This early betrayal by the medical system, coupled with family doubt and a neurologist’s oversimplified “just open your eyes,” lays bare the frustration of being unseen. Ciampa’s wit, however, comes through as she reflects and continues to taunt her parents while still feeling resentment over Steve’s incapacity.
Her journey to a diagnosis of a systemic autoimmune condition “treated as lupus” is a rollercoaster of tests, missteps, and, finally, validation from an honest doctor who admitted, “I don’t know.”
The heart of the book lies in its catalog of jaw-dropping comments. Doctors proclaim, “You look fine today!” as if a glance trumps her pain. While strangers criticize her based on her makeup or dark circles, family members advise her to “push through it,” which suggests laziness. Ciampa’s shift from hurt to dark amusement is relatable as she doesn’t just vent. Instead, she dissects why these remarks hurt, from invalidating her reality to reducing her to a “sick” stereotype. Her social work background adds depth, critiquing oppressive assumptions that illness defines her worth or dooms her to a loveless life (“How will you ever find a partner?”).
Ciampa’s late diagnoses of anxiety, depression, ADHD, and autism shed light on the weariness of masking—looking “fine” while struggling with social overload and emotional dysregulation. Comments like “you don’t seem autistic” or “don’t let it define you” sting, and she brilliantly counters the stigma, embracing how autism fuels her unique lens and lupus her resilience. Her defense of treatment as a means of improving her quality of life is empowering, and the medication controversy and fears that she will “lose her personality” highlight society’s misconception.
rom mocking Karen’s “you’ll be okay” mantra to chuckling at plane passengers offering mints during a seizure, she finds levity in chaos. Yet, she’s candid about hard days, the defensiveness born from doubt, and the loneliness of explaining herself. Her pragmatic advice to those recently diagnosed is to “smile and nod” or educate, encouraging readers to focus their energies on the important things. The book blends candid stories, perceptive observations, and a plea for consideration in a seamless manner.
The Shit People Say! is a mirror for anyone with chronic illness and a guide for allies. Ciampa beautifully craves respect, urging us to listen, not fix. Her resilience, humor, and refusal to be defined by her conditions make this a compelling, eye-opening read. Whether you’re dealing with health issues yourself or helping someone else who is, this book will make you think, laugh, and smile the next time you encounter someone who has a chronic illness.
Head to Amazon to purchase your copy.