The Lived Experience of MRKH: Sharing Health Information with Peers

Abstract

Study objective: To examine the process and emotional effect of disclosing a personal diagnosis of Mayer-Rokitansky-Küster-Hauser syndrome (MRKH) to peers during adolescence and young adulthood.

Design and setting: Qualitative study using semistructured telephone interviews.

Participants: Nine women diagnosed with MRKH, aged 21-31 years, recruited via patient support groups.

Interventions and main outcome measures: Motivators and barriers to self-disclosure of a diagnosis of MRKH to peers and partners.

Results: Motivators to tell peers about a diagnosis included significant trust in the relationship (whether platonic or romantic), needing to unload the experienced burden of diagnosis, and a sense of responsibility to be forthcoming if a long-term romantic future was desired. The most common barrier to telling others was fear of rejection or being labeled a "freak." Although most participants did not receive guidance from a health care provider regarding approaches to sharing diagnostic information with others, almost all participants reported wishing they had received such counseling.

Conclusion: A diagnosis of MRKH elicits recurring anxieties about disclosure and the effect on relationships that are inadequately addressed by health care providers. Guidance and support on disclosure to friends and romantic partners should be provided whenever possible.

Keywords: DSD; Disclosure; Education; Guidance; MRKH; Peers; Support.