How to Rebuild Trust After You’ve Been Misdiagnosed
Each year, roughly 795,000 Americans are hurt by a diagnostic error, according to the Johns Hopkins Armstrong Institute Center for Diagnostic Excellence. Vascular events, infections, and cancers accounted for 75% of the diagnostic errors. After a misdiagnosis, it can be hard to build trust with another healthcare provider.
At the same time, you still need answers and treatment. Here are some strategies to help you find them.
Request Your Medical Files
Request two copies of your medical files from your previous doctor. Keep one copy for yourself, organized in a binder by date and provider name. Ask your former healthcare provider to send the second copy to your new provider. If not possible, keep the second copy and take it to your new doctor’s office before your first appointment. This gives the doctor ample time to review it. Include any copies of past imaging, such as PET scans or MRIs.
Seek a Second Opinion
There are more than 26,000 diseases in MalaCards, a human disease database. Roughly 7,000 are rare diseases, which affect less than 200,000 Americans. The sheer number of diseases and the rarity of some can make it tough to get an accurate diagnosis. That was the case for Matt Adams, who was first diagnosed with premature ventricular contractions (extra heart beats that disrupt the normal rhythm, which can lead to skipped beats). After surgery and medication, he still didn’t feel right, leading him to seek a second opinion. He was then also diagnosed with arrhythmogenic right ventricular cardiomyopathy (ARVC), a rare genetic heart disorder. Once Adams had a complete diagnosis, he was able to get the right treatment. “I have an implant in my chest now to protect me if the arrythmias get too bad,” he says.
Find Another Healthcare Professional
If you have health insurance, ask your health insurance company to share a list of covered providers in your area. As you go through the list, look up the doctors’ offices online and check their website and reviews. On their website, read each doctor’s bio and see if they specialize in the same condition that might be impacting you. Additionally, check out reviews from past patients through the doctors’ Google Business, Healthgrades, U.S. News & World Report, and Vitals profiles. You can also look up the business on Better Business Bureau (BBB) to see their rating — from A+ (highest) to F (lowest). In some cases, BBB will not rate the business due to insufficient information, in which case you’ll see “NR” or “No Rating.”
Some examples of patient organizations include:
- American Cancer Society
- American Heart Association
- Autoimmune Association
- Crohn’s & Colitis Foundation
- GO2 for Lung Cancer
- National Bleeding Disorders Foundation
Be Open and Honest About Your Experience
To the degree that you feel comfortable, share your past experience with your new doctor. Let them know what tests have been conducted, the results, and about any existing diagnoses. Share why you think the diagnosis is either wrong or only part of the full picture. Bring information gathered from trusted sources, such as a disease-specific patient organization. “Be informed going into it,” Adams says. “If I have this condition and I’m going to live with it for the rest of my life, I’m going to know everything about it. So when I did seek out other opinions, I [was] able to understand the information I was given.”
Don’t Be Afraid to Ask Questions
Whether you decide to stay with your current doctor or seek a new one, ask questions until you feel comfortable with the information you’ve been provided. “Ask for more testing to be done, get a second opinion from another trusted health care professional, and most importantly ask more questions until you are satisfied with the answers,” advises Schleman. She also recommends bringing a friend or family member to the appointment, who can be a second set of eyes and ears. A medical diagnosis can be overwhelming and a second person can provide support throughout the process. They can also take notes to help you remember key points and follow-ups. “Gathering the information you need and being your own advocate are the best ways to rebuild trust,” says Schleman.
