The Hidden Crisis: Why Millions Wait Years for a Diagnosis
If you've ever felt like it took way too long to get diagnosed (or you're still frustratingly waiting for answers), you're not alone. Millions of people, especially women and people of color, face years of misdiagnosis, dismissal, and disbelief before finally getting the care they need.
This isn't just frustrating. It's dangerous.
The Reality of How Long It Actually Takes To Get Diagnosed
Let's be honest about what patients are facing across different conditions:
Autoimmune Diseases
For conditions like lupus, multiple sclerosis, Hashimoto's, and rheumatoid arthritis, the average time to diagnosis is a staggering 4.6 years¹. Nearly 45% of patients are misdiagnosed at least once, often dismissed with labels like anxiety, depression, or stress².
Sound familiar? Here are some of the responses patients hear most often:
"You're too young for this..."
"It's probably just stress..."
"You should try yoga, this might just be anxiety..."
"Your labs look fine, so there isn't anything abnormal..."
Invisible Illnesses
These conditions are particularly challenging because symptoms don't always show up on standard tests, making it easy for doctors to dismiss them, and incredibly hard and frustrating for patients to advocate for themselves.
Endometriosis takes an average of 7 to 10 years to diagnose³. Seven to ten years of pain, life disruptions, and sometimes, long-term damage that could have been treated earlier.
Fibromyalgia has an average diagnosis time of 5 to 7 years⁴, with patients often bouncing between specialists who can't find anything "wrong" or don't dig deep enough to find the root cause.
ME/CFS leaves many waiting 5+ years for answers⁵, frequently being told their debilitating fatigue is "in their head" or is not something to worry about.
POTS takes about 5 years to diagnose⁶, with many patients initially misdiagnosed with anxiety disorders.
Lyme disease presents a particularly troubling picture. A study of 3,903 patients found that more than half (51%) reported it took them more than three years to be diagnosed, with roughly the same proportion (54%) seeing five or more clinicians before diagnosis. This occurred despite 45% of participants reporting early symptoms within days to weeks of tick exposure. 72% of patients (72%) reported being misdiagnosed with another condition prior to their Lyme diagnosis²⁰.
IBS (Irritable Bowel Syndrome) affects 10-15% of adults, but only 5-7% ever receive an official diagnosis²¹. Many patients struggle for years with symptoms before getting proper care, and the condition is often dismissed as "just stress."
Ehlers-Danlos Syndrome has a median time to diagnosis of 10 years from symptom onset²², with many patients labeled as hypochondriacs or told their joint pain is "normal" despite debilitating symptoms. Harvard Health reports that it often takes an average of 10 to 20 years to receive an EDS diagnosis, with many people not getting accurate answers until well into their 40s²³.
Long COVID is still emerging as a recognized condition, but many patients report months or years of being told their ongoing symptoms are psychological, despite clear physical manifestations following COVID-19 infection.
The Gender Diagnosis Gap
Here's something that shouldn't surprise anyone who's been through this: women wait longer than men for diagnoses and treatment, especially for chronic pain, heart disease, and neurological symptoms.
The numbers are stark. Women are diagnosed an average of 4 years later than men for the same chronic condition⁷. In emergency rooms, women wait 33% longer than men when presenting with abdominal pain⁸. And despite representing 80% of autoimmune disease cases, women's symptoms are more likely to be minimized, misdiagnosed, or written off as psychological⁹.
Why? The medical system simply wasn't built for women. For decades, medical textbooks, clinical trials, and diagnostic protocols were designed around the male anatomy and experience. We're still catching up from that foundation.
Racial and Ethnic Disparities Make It Worse
The delays are even more pronounced for Black, Indigenous, and Latinx patients. Black women are more likely to develop lupus but are diagnosed later and face more severe outcomes¹⁰. People of color are more likely to have their pain dismissed, their symptoms ignored, or be misdiagnosed with mental health conditions instead of physical ones¹¹.
A 2019 study found that Black and Hispanic patients waited longer for endometriosis diagnoses and received fewer pain medications after treatment¹², a double blow that's both medically and ethically unacceptable.
The Asian Research Gap
Here's something else particularly troubling: research on diagnosis disparities for Asian patients is shockingly limited. Asian patients are often lumped under broad "Other" categories, making their experiences invisible in the data.
What little research exists suggests Asian Americans are less likely to receive pain medication in emergency settings¹³, and cultural and language barriers often delay diagnosis and care, especially in immigrant communities¹⁴. There's almost no specific data on invisible illness diagnoses for Asian patients, highlighting a critical gap that needs immediate attention¹⁵.
What This Actually Means for Real People
These aren't just numbers on a page, they represent real harm. Late diagnoses lead to worse health outcomes, higher medical costs, delayed treatment that could have prevented complications, and significant psychological distress.
The Hidden Economic Cost
The financial burden of delayed diagnosis is staggering. Overall, the cost of treating autoimmune diseases is estimated at more than $100 billion annually in the U.S.¹⁶ But that's just the beginning.
For endometriosis alone, the annual economic burden in the United States is estimated to be between $78 billion and $119 billion¹⁷. On an individual level, patients face crushing costs while searching for answers. Direct costs of endometriosis include in and outpatient treatment, surgery, and prescription costs, which in the US average $12,118 per patient, per year. Indirect costs, including days of work lost and reduced quality of work, were almost $16,000 per patient per year¹⁸.
The cruel irony is: those costs over the 60-month pre-diagnosis period were significantly higher in patients with longer diagnostic delays (an average of $34,460) compared to those diagnosed earlier¹⁹. In other words, the longer you wait for answers, the more expensive your journey becomes.
Maybe most damaging of all is the isolation and self-doubt that comes from years of not being believed. Too many patients start questioning their own reality after being dismissed repeatedly by the very people who are supposed to help them.
We Can Do Better
The solution isn't complicated, even if implementing it is challenging. We need to redesign the healthcare system around the people who actually use it, especially those who have been historically ignored.
That means listening to patient stories with the same weight we give lab results. It means validating subjective symptoms as legitimate medical data. It means building better tools for early detection and diversifying medical research to include bodies that aren't male, white, and young.
Most importantly, it means designing systems that actually work for women, people of color, and people living with invisible illnesses.
Because here's the truth: lived experience is real data.
If This Is Your Story…
If it took you years to get diagnosed, or if you're still fighting for answers, please know that you are not alone. The system wasn't built for bodies like yours, but that doesn't make your experience any less valid.
Your symptoms are real. Your voice matters. And you deserve care that believes you the first time.
This is exactly why tools like Laso exist. We're on a mission to help bridge the gap between real-time patient experiences and medical understanding, making it easier for people to track their symptoms, advocate for themselves, and find the care they deserve. We're fighting for that change, one patient story at a time.
Together, we can rebuild this system to work for everyone.
Sources
EnviroKlenz. (2023). Women's Guide to 8 Autoimmune Diseases.
Autoimmune Association. (2021). Misdiagnosis and delays in autoimmune care.
Ballweg, M. (2004). Impact of endometriosis on women's health: Comparative diagnosis delay.
National Fibromyalgia Association. (2019). Understanding fibromyalgia diagnosis.
Institute of Medicine. (2015). Beyond Myalgic Encephalomyelitis: Redefining an illness.
Dysautonomia International. (2020). POTS overview and diagnostic delay.
Mayo Clinic Proceedings. (2020). Gender bias in medical diagnosis.
Yale University. (2008). Sex-based differences in emergency pain management.
NIH Office of Research on Women's Health. (2021). Autoimmune diseases disproportionately affect women.
CDC & Lupus Foundation of America. (2022). Lupus in women of color.
Hoffman, K. M., et al. (2016). Racial bias in pain assessment and treatment recommendations.
Seckin, T. (2019). Healthcare disparities in endometriosis diagnosis.
Chen, I., et al. (2008). Disparities in opioid prescribing by race and ethnicity.
HHS Office of Minority Health. (2020). Barriers to care in Asian American communities.
Journal of Health Disparities Research and Practice. (2021). Gaps in Asian American health data.
NPR. (2023). Autoimmune disease patients hit hurdles in diagnosis, costs and care.
American Medical Association Journal of Ethics. (2025). Using policy and law to help reduce endometriosis diagnostic delay.
Frontiers in Global Women's Health. (2022). Endometriosis is undervalued: A call to action.
Endometriosis News. (2020). Delays in endometriosis diagnosis linked to higher healthcare costs, increased symptoms.
Johnson L, Shapiro M, Mankoff J. (2018). Removing the Mask of Average Treatment Effects in Chronic Lyme Disease Research Using Big Data and Subgroup Analysis. Healthcare (Basel).
Cleveland Clinic. (2023). Irritable Bowel Syndrome (IBS): Symptoms, Causes & Treatment.
The Ehlers-Danlos syndromes (EDS) GP Toolkit. (2023). Recognition and diagnosis guidelines.
Harvard Health Publishing. (2017). Ehlers-Danlos syndrome: A mystery solved.
Johnson L, Shapiro M, Mankoff J. (2018). Removing the Mask of Average Treatment Effects in Chronic Lyme Disease Research Using Big Data and Subgroup Analysis. Healthcare (Basel).
Cleveland Clinic. (2023). Irritable Bowel Syndrome (IBS): Symptoms, Causes & Treatment.
The Ehlers-Danlos syndromes (EDS) GP Toolkit. (2023). Recognition and diagnosis guidelines.
Harvard Health. (2017). Ehlers-Danlos syndrome: A mystery solved.
