Reasons for patients not disclosing Lyme disease to their doctor?
After reading an article entitled “Assessment of Patient Nondisclosures to Clinicians of Experiencing Imminent Threats,” by Levy and colleagues, I began to wonder why some patients might not disclose they have Lyme disease to their primary care physician.
The results of a survey by Levy et al. offer some possible answers. The authors looked at patients who had suffered at least 1 of 4 imminent threats including depression, suicidality, abuse, and sexual assault.
They found “that many people withhold information from their clinicians about imminent health threats that they face,” writes Levy. 
The most common reasons for not disclosing an imminent threat to the doctor were:
- Avoid embarrassment;
- Avoid judgment or lecture;
- Avoid difficult follow-up behavior;
- Did not want the information in their medical records;
- Did not think clinician could help;
- Concern about appearing weak.
Other reasons included:
- Concern about their family finding out;
- Did not seem relevant;
- Did not want to be perceived as a difficult patient;
- Bad prior experience;
- Wanted clinician to like them.
The study’s findings are difficult to evaluate as it was based on an online survey.
Nevertheless, the study can offer insight into why patients might not disclose Lyme disease to their doctor.
“These findings suggest that concerns about potential negative repercussions may lead many patients who experience imminent threats to avoid disclosing this information to their clinician,” Levy writes.
This study raises an important concern about clinician-patient communication: “If patients commonly withhold information from clinicians about significant threats that they face,” writes Levy, “then clinicians are unable to identify and attempt to mitigate these threats.”
Getting the diagnosis correct and avoiding ‘anchor bias’
Scientific community discounts Lyme disease patients
- Levy, A. G., et al. (2018). “Prevalence of and Factors Associated With Patient Nondisclosure of Medically Relevant Information to Clinicians.” JAMA Netw Open 1(7): e185293.
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…