Most of us have been taught to trust doctors unconditionally. We assume that if something is wrong with our bodies, a physician will find it. But for patients with rare, poorly understood, or stigmatized conditions, that assumption can be dangerous.
Carry Wilson spent seven years fighting a medical system that repeatedly dismissed, misdiagnosed, and institutionalized her, before she diagnosed herself. Her memoir, Shattered, is one of the most compelling and practical guides to patient self-advocacy ever written, even though it was never intended to be a guide at all.
Here are the hard-won lessons from her journey that every patient navigating a difficult medical situation should know.
1. Trust Your Body Over Your Doctor’s Opinion
This is perhaps the most fundamental, and the most difficult, lesson in Shattered. Doctor after doctor told Carry they didn’t smell an odor from her body. People in her daily life clearly did. She knew the truth.
“I am right, and they are wrong.” She said this in the face of unanimous medical disagreement, and she was correct.
This isn’t an invitation to dismiss all medical expertise. It’s a recognition that you live in your body 24 hours a day. A physician who spends eight minutes with you in an air-conditioned office is not the final authority on what your body is doing. When your lived experience and a doctor’s brief assessment diverge, investigate further before accepting their conclusion as final.
2. Do Your Own Research, and Bring It With You
Carry found information about bromhidrosis (a related condition involving sweat gland odor) in a medical library book. She photocopied pages and brought them to appointments. She read everything she could access. When she finally came across a reference to TMAU in a dermatology resource, she went to the library and requested more information through an interlibrary loan program.
This self-directed research ultimately led to her diagnosis. Here’s how to do it effectively:
- Use PubMed, the NIH database, and rare disease organizations like NORD (National Organization for Rare Disorders) to search for conditions that match your symptoms.
- Bring printed summaries to appointments and ask your doctor to review them with you.
- Name the specific tests you want to be considered for, not just the symptoms.
- For body odor conditions, ask specifically about TMAU testing, as it requires a specialized urine test and is not part of standard panels.
Carry’s research was pre-internet. You have access to resources she could only dream of. Use them.
3. Change Doctors When Necessary, More Than Once
Carry saw over a dozen physicians before getting any meaningful traction. She changed primary care doctors. She sought referrals to specialists. She visited different hospital systems. Each time a physician reached a dead end or dismissed her, she moved on.
This is exhausting. It is also sometimes the only option. If a doctor is not helping you, they are not your only option. Key signs it may be time to seek another opinion:
- The doctor dismisses your symptoms without further investigation.
- You leave appointments without a clear next step or referral.
- The doctor suggests your symptoms may be psychosomatic without first ruling out physical causes.
- You are offered psychiatric medication for a condition with no psychiatric diagnosis.
4. Know the Difference Between Mental Health Support and Medical Gaslighting
Carry was hospitalized twice in psychiatric wards and offered antipsychotic medication. She consistently declined. She understood something important: accepting a psychiatric diagnosis for a physical condition would not treat the physical condition. It would only complicate and delay the real diagnosis.
Mental health support is valuable and often necessary when living with chronic illness. But mental health treatment should accompany, not replace, investigation into physical symptoms. If a physician recommends psychiatric care as an alternative to further physical workup, push back and ask why the physical symptoms are not being further investigated first.
5. Contact Organizations, Not Just Clinics
One of the turning points in Carry’s story was her call to NORD, the National Organization for Rare Disorders. NORD sent her the only information they had on TMAU, which led her to Dr. George Preti at the Monell Chemical Senses Center, who ultimately helped her get tested.
When traditional medical channels fail, disease-specific organizations can be critical resources:
- NORD (rarediseases.org): Connects patients with rare disease researchers and support communities.
- The Monell Chemical Senses Center (monell.org): A leader in TMAU research and testing support.
- Patient advocacy organizations: Many rare diseases have dedicated foundations that can recommend specialists and connect you with others who share your condition.
- Online patient communities: Organizations like TMAU UK maintain forums where sufferers share physician recommendations and treatment insights.
6. Document Everything
Carry kept copies of every piece of medical information she found. She brought them to appointments. She tracked the progression of her symptoms. When doctors said they didn’t smell her, she had documentation of the pattern of others who did.
Keep a symptom diary. Note when symptoms are worst (time of day, menstrual cycle correlation, diet, temperature). Bring a written list of symptoms to every appointment. Request copies of all test results and keep them in a folder. This documentation creates a medical record that speaks for itself when a physician’s memory or attention is limited.
7. Protect Your Mental Health While You Fight
Self-advocacy is exhausting. Carry went years without adequate support, and the toll was severe, depression, suicidal ideation, estrangement from her daughter, social isolation. If you are in a prolonged battle with the medical system, you need anchors:
- A therapist or counselor who understands chronic illness and validates your experience (not one who pathologizes your belief in your own symptoms).
- A small support network, even one or two people, who believe you.
- Connection with others who share your condition through support groups.
- Regular check-ins with yourself about your mental health and safety.
Carry prayed. She talked to herself. She told herself to stay strong. These were imperfect lifelines, but they kept her moving toward the diagnosis that changed her life.
The Bigger Picture: A System That Needs to Change
Carry’s story is not just an individual triumph of persistence. It is an indictment of a system that fails patients with rare diseases at every level. No single physician she encountered proactively researched her condition, reached out to colleagues, or referred her to specialists with rare disease expertise. She did the diagnostic work herself.
The average time to diagnosis for a rare disease is 4–7 years. Approximately 30 million Americans live with rare diseases. Most will experience multiple misdiagnoses. Most will be told, at some point, that their condition is imagined or exaggerated.
Your job as a patient is not to accept that fate. Your job is to keep asking, keep researching, and keep refusing to be silenced, just as Carry Wilson did.