Overcoming Medical Mistrust and Becoming Your Own Advocate 

 

By Brielle Collins

August 24, 2026

Growing up, I hated having to visit the doctor when I was sick. I felt like my pain was frequently ignored and my concerns were never taken seriously, even at a young age. This mistrust and anxiety felt by many, especially within the Black community, isn’t an irrational fear but one backed by a history of historical injustices in medicine. 

Over the course of the 17th and 18th centuries, American physicians worked on a basis of racial inferiority that saw Black Americans as subhumans who could be used as experimental specimens. From 1845 to 1849, Dr. J. Marion Sims conducted unethical human experiments on unconsenting Black enslaved women in efforts to cure vesicovaginal fistulas. Lack of consent continued to remain a massive factor in medicine; in 1951, doctors at Johns Hopkins Hospital took tissue samples from Henrietta Lacks’ cervical tumor without her knowledge and used them for future scientific experiments. 

And perhaps the most notorious example of them all is the Untreated Syphilis Study at Tuskegee. Conducted between 1932 and 1972, 600 participating Black men were misled, told that they were receiving care for “bad blood,” and were not alerted that they had syphilis. Even after the curative standard for syphilis, penicillin, became medically accepted, researchers actively prevented participants from accessing treatment so they could watch how the disease naturally moved through their bodies.

In a study done by the Pew Research Center, 78% of Black people are aware of the reality that medical researchers experiment on Black people without consent. This means that every time they go to visit the doctor, this information is in the back of their heads, fortifying this distrust. Even though we have made progress in combating medical injustices, today Black Americans still have a severe distrust of healthcare. The majority of Black Americans (55%) say they have had negative experiences with doctors and do not feel like their experiences are taken seriously. But despite all of this, taking care of your health is still essential, and medical mistrust should not be a barrier to your own safety. 

The best way to overcome this and make sure you feel seen and heard by your doctor is by learning to become your own health advocate. Being your own health advocate means taking an active role in your medical journey, understanding your rights, knowing how to effectively communicate, and refusing to take the backseat when discussing treatment options. 

Here are four top ways to be an effective health advocate for yourself: 

  • Bring a family member or friend: If you are hesitant to stand up for your needs on your own, bring a trusted person along to help reinforce your concerns and speak up if they feel something is off. 
  • Build a healthcare team you trust: There are many doctors out there, and just because you have gone to one doesn’t mean you cannot try someone new. Seek out a team that helps alleviate your anxiety rather than adding to it. If a provider is not meeting your standards, do not be afraid to switch until you find a professional you are fully confident in. 
  • Keep your medical records organized: Keeping track of your own health records gives you massive leverage when moving to different practices, seeking a second opinion, or protecting yourself in case files get misplaced. It also makes it much easier to identify if a new treatment plan might interfere with any medications you are already taking. Take matters into your own hands and track your own health journey. 
  • Don’t be afraid to ask questions: Discussing your health should always be a collaborative effort. Do not be afraid to ask about treatment risks, or ask for clarity if something sounds confusing. Prepare a list of questions before your appointment to organize your thoughts and fully optimize your time with the provider. 

Prioritizing your health is essential to your own self-care and the community surrounding you. Do not let medical mistrust stop you from being the best version of yourself. Use these tips to become your own health advocate and schedule that overdue checkup. And if you know a loved one also battling with medical mistrust, step in and teach them how to advocate for themselves as well.