Misdiagnosis: Inside the patient experience


A word patients living with chronic illness are all too familiar with. Did you know it takes nearly 5 years for the average autoimmune patient to receive a proper diagnosis?

In the age of “Dr. Google”, patients and caregivers are taking control of their own health and bringing research to their doctors...sometimes even diagnosing themselves!

We brought this topic to our monthly #PatientsHavePower Twitter Chat and learned that misdiagnosis is happening to patients of all ages across therapeutic areas. We've compiled some snippets from the chat so you can get the inside experience on misdiagnosis.

Christina Lizaso, Patient Advocate

Christina L

Across many diseases, patients who report physical symptoms are told it is "all in their head". Really hate that this is a pretty universal experience.

Tami Seretti, Psoriatic Arthritis Patient Advocate

Tami S.

I went to the ER and was diagnosed with a "sprain inside both ankles at the same time." A few months later I was still crawling the stairs and couldn't stand the weight of a bed sheet on my feet, the doctor said I could expect things like that "at my age". I was 38. Years later I was diagnosed with psoriatic arthritis.

Chris Anselmo, Muscular Dystrophy Patient Advocate

Chris A

I was in a car accident in high school. Although I had no outward symptoms, my blood work came back out of whack. They thought I had suffered an internal injury. Then they thought I had a liver problem. After they ruled that out they referred me to a rheumatologist who did a biopsy on my leg and determined I had muscular dystrophy. It took over 10 months and around 8 doctor's visits to finally learn I had a ticking time bomb.

Molly Sarah, Ehlers-Danlos Patient Advocate


With rare disease Ehlers-Danlos I have been misdiagnosed several times. The worst was definitely when my uterus/cervix ruptured and it was three times misdiagnosed as "severe UTI" and "heavy period" instead of what it really was. Ended in hysterectomy.

Andrea Conners, Executive Director, Patient Empowerment Network

Andrea C

My Mom was misdiagnosed for years before finally receiving a diagnosis of Inclusion Body Myositis. Everyone, including us, told her she just needed to exercise more.

Angela Cohen, Chronic Illness Patient Advocate

Angela C

Before I was diagnosed with Dysaitonomia POTS (and even after), I went to the Emergency Department because of symptoms. I was told I had anxiety/panic attacks. The worst part, in my opinion, is that they didn't advise me to seek treatment or follow up with anyone.

Savanna Braun, Chronic Illness Patient Advocate


At age 21, I was told I had depression and given a script for 2400 mg per day of ibuprofen. Boy did that damage my liver and do nothing for my (undiagnosed) arthritis.

Becky Brandt, RN and Central Pain Syndrome/RSD Patient Advocate

Becky B

Many invisible illnesses are a precursor to misdiagnosis .Recently my pilonidal cyst went undiagnosed for many months. My doctor thought it was part of my pain disease, and the subsequent infection ended up eating a tunnel through my gluteus maximus muscle.

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