Reasons Patients Do Not Disclose Lyme Disease to Their Doctor
Why do patients withhold information about Lyme disease from their doctor? The results of a survey by Levy et al. offer important insights into why patients may not disclose medically relevant information.
The authors examined individuals who had experienced at least one of four serious health threats—depression, suicidality, abuse, or sexual assault—and found that many patients withheld critical information from their clinicians.
“Many people withhold information from their clinicians about imminent health threats that they face,” writes Levy. [1]
Why Patients Withhold Information
The most common reasons for not disclosing information to a doctor included:
- Avoid embarrassment
- Avoid judgment or a lecture
- Avoid difficult follow-up behavior
- Did not want the information in their medical record
- Did not think the clinician could help
- Concern about appearing weak
Other reasons included:
- Concern about family finding out
- Did not think it was relevant
- Did not want to be perceived as a difficult patient
- Bad prior experience with a clinician
- Wanted the clinician to like them
Implications for Lyme Disease Patients
These findings may help explain why some patients do not fully disclose Lyme disease symptoms or concerns during clinical visits.
Barriers such as fear of dismissal, prior negative experiences, or uncertainty about diagnosis may contribute to underreporting—particularly in complex conditions like Lyme disease and co-infections.
“These findings suggest that concerns about potential negative repercussions may lead many patients to avoid disclosing important information to their clinician,” Levy writes.
Why Communication Matters
This study highlights a critical issue in clinician–patient communication. If patients withhold important health information, clinicians may miss opportunities for timely diagnosis and treatment.
Encouraging open communication and building trust are essential for improving outcomes—especially in conditions where diagnosis may already be challenging.
Related Articles:
Getting the diagnosis correct and avoiding ‘anchor bias’
References:
- Levy AG, et al. Prevalence of and factors associated with patient nondisclosure of medically relevant information to clinicians. JAMA Netw Open. 2018;1(7):e185293.
Dr. Daniel Cameron, MD, MPH
Lyme disease clinician with over 30 years of experience and past president of ILADS.
Symptoms • Testing • Coinfections • Recovery • Pediatric • Prevention
I’m not surprised. Each time I have mentioned Lyme to a non LL doctor, I’ve been labelled as a hypochondriac and all my concerns have been dismissed. My first child was born with congenital Lyme, and since day 1, all my concerns about him have been brushed off as “confabulation” by his many pediatricians. The CDC has done some real damage…