Unique Bodies, Unique Stories: Exploring the Mental Health Experiences of Intersex Individuals

Unique Bodies, Unique Stories: Exploring the Mental Health Experiences of Intersex Individuals poster

Audio Presentation:

Audio Transcript

Research Authorship:

Courtney Boggs, Hannah Glusenkamp, April Jones, Terry Kirton, Faith Ponti, Cortney Surrency, & Tes Tuason, PhD BCOH, Public Health, CMHC

Faculty Mentor:

Dr. Tes Tuason | Brooks College of Health | Department of Public Health


There is between 1 in 1,500 and 1 in 2,000 intersex births per year. The term intersex refers to infants born with genitalia that are not definitively male or female (“How common is intersex?,” n.d.). Though a relatively common birth condition, great societal and familial secrecy surrounds the issue of intersex conditions (Danon, 2019; Meoded-Danon & Yanay, 2016). Research shows that this secrecy, along with medical trauma from corrective and maintenance surgeries and confusion about one’s body and identity, can cause long-term mental health struggles among intersex individuals and their caretakers (Danon, 2019; Meoded-Danon & Yanay, 2016; Schweizer et al, 2009; Williams, 2002). The present study aimed to uncover specific mental health themes discussed by intersex individuals and their family members on social media sites with the intention of exploring self-described mental health experiences of this population. Using as our paradigms the Gender Affirmative Model (Hidalgo et al., 2013), Critical Theory, and Feminist theory, then analyzing data using Consensual Qualitative Research (CQR) (Heppner et. al, 2008), the research team conducted a content analysis across 125 posts from three social media sites: Reddit, Facebook, and Susan’s Place. The posts were then coded according to six criteria: Trauma, Secrecy and concealment, Social support, Self-views, Calls for advocacy, and Other comments relating to mental health but not belonging to the other five classifications. Results show that discussions surrounding mental health are common on these online forums and that they span many categories. The intersex community is not monolithic; each voice deserves to be heard but is so rarely given the opportunity. This study recommends that future research be conducted regarding mental health experiences of intersex individuals so that those in the helping professions may become informed and better trained in supporting this community. Clinical implications will be discussed.


Hi everyone, my name is Courtney Boggs, and I will be presenting for my group. I am in the mental health to have counseling program here at UNF, and for our group research project we wanted to explore the mental health experiences of individuals who identify as intersex. Our project is called Unique Bodies, Unique Stories, and the purpose of our research was to contribute to greater understanding about the lived experiences of people who identify as intersex. “Intersex” refers to biological traits that, and people who, do not fit typical definitions of female or male embodiment. We use terminology like “intersex”, “individuals who identify as intersex”, and “intersex conditions,” meaning that a person may have somatic intersex variations including a variance in external genitalia, a variance in chromosomal formation, or a difference in sex hormones affecting development. We seek to expand the conversation about the mental health experiences of intersex individuals by reviewing social media platforms aimed at supporting this population. Based on pre-existing literature, we predict to observed common medical themes shared by intersex individuals and their community within these online platforms. There’s a strong need for greater conversation, research, and training to provide the best care to intersex individuals and their families. For example, in the American Counseling Association competencies for LGBQIQA  individuals, there is a section that states, “the authors felt the individuals who are intersex have any concerns that cannot necessarily be subsumed into the main body of the document. While it was outside the scope of the work of the task force, the authors strongly encourage the expansion of the intersex sections in the future.” As a team we utilize a Critical theory, Feminist theory, and Gender Affirmative model framework. The Gender Affirmative model advocates for babies, children, and their parents to be supportive of intersex conditions and allows the child the choice about how do identify and express themselves without forced intervention. We conducted a content analysis of the most recent 125 post and comments across three different social media sites. These sites included Facebook, Reddit, and Susan’sPlace.Org. 75 of the post where observed from to public social media sites which were Reddit and Susan’s Place. 50 of the post were observed from the private Facebook support group for intersex individuals, which we were granted access to by the admin after telling them our research intentions. The team then split into three groups of two and each was assigned one social media site. As a team we used consensual qualitative research analysis to analyze and categorize the post and comments into six distinct mental health teams as determined by pre-existing research. When applicable, post and comments were assigned to more than one theme. Consistent with the literature, six developing themes surrounding intersex mental health experiences emerged from the observed online intersex support forums. These themes included confusion and/or discussion of self-view, secrecy and concealment, trauma, social support, and a call to advocacy. Additional themes were identified and coded for as “other”.  These themes included group identity, healthcare experiences, the impact of language, and social stigma. Out of the total number of posts the most frequently coded theme emerged as self-view at 40%. Across the support forums, individuals expressed confusion around there and intersex identity, gender identity, gender presentation, body, and body part. The theme of secrecy and concealment was also identified across 15% of the post and comments, and many subjects reported not finding out about out about their intersexuality until later in life due to secrecy maintain by their parents and medical professionals. Also, descriptions of trauma occurred across 8% of the post, and of the total posts trauma was only mentioned across one social media platform, which was the private Facebook support group. The type of trauma expressed within the posts included sexual trauma and physical trauma. One commenter wrote that the violence he experienced in the military was directly correlated with his intersexuality. Within the “others” category, healthcare expenses coded for 53% of the posts coded as “other”. They described poor healthcare experiences, medical incompetence related to intersex conditions, poor access to resources, and seeking mental health services. Many respondents expressed difficulty finding competent doctors for intersex specific conditions, and many respondents also expressed a distrust and medical professionals due to the healthcare system pathologizing gender non-conforming bodies. Also, within the “others” category, themes surrounding group identity occurred in 28.6% of the “others” category. In these posts, individuals advocated for, and took pride in, their intersex community identity. Some even argued that inclusivity of the intersex flag is more imperative now more than ever, especially due to the individual, medical, and social mistreatment the community often faces due to social stigma. Impact of language, which was a similar theme to group identity, occurred and 32.7% of the comments coded as “other” as well. In these post, individuals discussed the importance of appropriate language within the community between what it means to be intersex versus transgender. These commenters believed that terminology was important, because wrong language may overshadow the specific systemic struggles each community faces. As well, as a team we found that intersex individuals often were subject to discrimination due to the social stigmas around not conforming to gender norms. Within the others category, 8.2% of the emergent themes encompassed social stigma. Many reported that the impact of social stigma around intersexuality had an impact on their interpersonal relationships. Although most detailed negative experiences, some shared positive experiences specifically regarding their appreciation for the support they received from their social networks. Many reported experiencing receiving support that impacted their lives. 13.6% of the post encompassed social support and acceptance from their peers. A lack of posts or comments calling for advocacy may indicate that online support groups are not a preferred platform for intersex individuals who seek support alliance or public policy change. Perhaps advocacy is more frequently discussed on platforms that speak to the public rather than the intersex community. To better understand mental experiences of the intersex community, future research is suggested. Intersex individuals, parents, and advocates are working to change beliefs laws and practices worldwide surrounding the treatment and experiences of individuals with intersex variations. As student researchers who do not identify as intersex, we are conscious of and seek to contribute to the non-exploitive of ways that do not perpetuate violence and oppression towards intersex people and communities. As counselors-in-training, we hope that this research helps contribute to the research and competency of our profession. Thank you so much for listening.

3 thoughts on “Unique Bodies, Unique Stories: Exploring the Mental Health Experiences of Intersex Individuals”

  1. Excellent! I am so proud of all your hard work (and the amount of time, too) in coming up with this research idea that involves a sexual minority population, gathering data from web posts (very unique), analyzing your results and putting this up in this informative, clear and thoughtful poster! Looking forward to your paper.

  2. Kassie Terrell

    Great work! As you all mentioned, ACA clearly stated the limitations associated with competencies when working with this community. This is a great first step in addressing that need!

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