Lyme disease-related stigma among persons with persistent symptoms

Aims: Although Lyme disease is the most common tickborne disease in the world, disagreement about diagnosis and treatment may be a source of stigma for those with the disease. This study examined both helpful and stigmatizing experiences among Lyme disease patients with persistent symptoms. Method: In California, 51 adults diagnosed with Lyme disease were assessed on demographic and medical characteristics, the Lyme Disease Stigma Scale, and open-ended questions regarding healthcare and other experiences. The age range was 22-71 years, 74.5% were female, and 98.1% experienced symptoms for over a year. Results: Main patient complaints were (1) “Concerns about one's Lyme disease not being taken seriously” (M=34.6, SD=6.8); (2) “Experiences of discrimination,” (M=30.7, SD=7.2); and (3) “Concerns about disclosure,” (M=26.7, SD=7.7). Ninety two percent agreed that physician attitudes toward Lyme disease interfere with adequate treatment of patients with this illness. Healthcare providers were viewed as unhelpful if patients were told that they have “mental issues” or “psychosomatic symptoms” when a Lyme diagnosis was not made. Healthcare providers were viewed as helpful if they listened to the patient or “started a support group” for patients with Lyme disease. A typical positive statement about healthcare providers was, “They gave me strength by listening and imparting information about how I could better help myself.” Conclusions: Lyme disease-related stigma manifests in multiple ways and is perceived by patients with persistent symptoms as interfering with adequate medical care. In contrast, listening to patients and providing greater opportunities for support are perceived as ways in which healthcare providers can be helpful.