Years ago I was shocked when I learned that one of my patients with 46, XX spontaneous primary ovarian insufficiency caused by steroidogenic cell autoimmunity had committed suicide. When I heard about this it had been several years since I had last seen her. I was deeply saddened. I found it hard to believe. During all of my prior interactions with this woman she had been bright, upbeat, outgoing, friendly -- a beautiful young woman in so many ways. In the ensuing court proceedings after her death her diary became part of the court record. The diary made it crystal clear that the infertility related to her diagnosis was a major factor in her suicide. The memory of this woman haunts me. To me, she is the “One Woman” in the “One World, One Woman” approach to primary ovarian insufficiency. Her death might have been prevented by an integrated approach to primary ovarian insufficiency – an approach that takes seriously the emotional health issues around this condition. This was indeed a powerful wake-up call for me. Our team now screens all of our patients with primary ovarian insufficiency with instruments distributed by the nonprofit organization Screening for Mental Health, Inc. (http://www.mentalhealthscreening.org/
). This tool screens for depression, generalized anxiety disorder, bipolar disorder, and post traumatic stress disorder.
Ministering to the emotional health of young women with primary ovarian insufficiency begins by informing them of the diagnosis in a sensitive manner. In a cross sectional retrospective study we assessed the emotional needs of 100 women previously diagnosed with the condition.(15
) A majority was dissatisfied with how they were informed by their clinician. Also, the evidence suggested that the manner in which we inform patients can significantly impact their level of distress around this disorder. Patients with primary ovarian insufficiency perceive a need for clinicians to spend more time with them and to provide more information about the condition.
In another cross sectional study of 100 women we assessed the psychosocial transition associated with the diagnosis of 46,XX spontaneous primary ovarian insufficiency.(16
) Using validated instruments we showed that the more illness uncertainty a woman reported the more symptoms of anxiety she was experiencing. The more stigmatized she felt by the condition the more symptoms of depression she was experiencing. The findings suggest that we as clinicians might help these patients recover emotionally by reducing their uncertainty regarding the illness and doing what we can to reduce the associated stigma. Most importantly, however, on multiple regression analysis we found that the single most important measure that remained significant with regard to symptoms of both anxiety and depression was purpose in life.
Our finding that purpose in life is the single factor that survives multiple regression analysis with regard to affect supports a conclusion that loss of a sense of purpose in life is the major emotional impact of the diagnosis for most of these women. Psychiatrist Victor Frankl referred to disruption of life purpose as “identity disruption.”(37
) For three years Vicor Frankl labored in 4 different Nazi concentration camps while other members of his family perished, including his pregnant wife. In his book about the experience, Man’s Search for Meaning
, Frankl argues that we as humans cannot avoid suffering, but we can choose how we cope with it, find meaning in it, and move forward with renewed purpose. Frankl’s theory holds that as humans our primary drive in life is not pleasure, as Freud argued, but the discovery and pursuit of what one personally finds meaningful. Another term Frankl uses is “existential frustration.” Here is his description in his own words,
“Existential frustration in itself is neither pathological or pathogenic. A [woman’s]
concern, even despair, over the worthiness of [her]
life is an existential distress but by no means a mental disease.” (37
Now, based on our research data and on my four decades of personal interactions with women who have 46,XX spontaneous primary ovarian insufficiency, I have come to see this situation quite differently. I conclude that a clinician’s most direct approach toward helping women with this diagnosis heal emotionally is to assist them in the self-discovery of the meaning and purpose in their life. As clinicians we need to find referral patterns that help patients navigate what Victor Frankl called “meta-clinical” problems (I assume he was using “meta” in the sense of “meta” physical). In his words,
“Some of the people who nowadays call on a psychiatrist would have seen a pastor, priest, or rabbi in former days. Now they often refuse to be handed over to a clergyman and instead confront the doctor with questions such as,‘ What is the meaning of my life.’ ” (37
How can clinicians help women cope with the diagnosis in the most constructive manner, find meaning in it, and move forward with renewed purpose? If the emotional impact of this diagnosis is indeed mediated through an existential crisis then an existential response is required. The diagnosis raises questions in patients such as, “Where am I?” “What am I?” “Who am I?” and “Why am I here?” These are existential questions that most clinicians are not trained to help patients address. Our experience at the NIH Clinical Center has been that these are domains most appropriately addressed by our spiritual ministry colleagues and also our occupational therapy colleagues. It may seem strange to include occupational therapy here, but I have found them a powerful addition to our team. I was never clear on what these professionals do. Recently it was explained to me by my colleague Susan Robertson, “Occupational therapy helps people build a life around what they find meaningful.”(38
) Perfect, this is exactly what is needed.
In collaboration with the Spiritual Ministry Department at the NIH Clinical Center, in another cross sectional study, using validated instruments, our team investigated the relationship between spiritual well-being and functional well-being in these patients. We studied 138 women with 46,XX spontaneous primary ovarian insufficiency.(39
) We found the meaning subscale of the spiritual well-being instrument significantly correlated with functional well-being, explaining approximately 62% of the variance. In contrast, the faith subscale of the spiritual well-being instrument explained only 7% of the variance. On regression analysis only the meaning subscale remained significant. The findings support a conclusion that having a clearer sense of meaning and purpose in life are important factors in emotional wellness in this population. We need prospective controlled interventional studies to inform how we can best facilitate a search for renewed meaning and purpose in the lives of those women who, related to the diagnosis, feel lost in this regard.
In another study, in collaboration with the Section on Behavioral Endocrinology, Intramural Research Program of the National Institute of Mental Health, we examined the lifetime risk of depression in 174 women with 46,XX spontaneous primary ovarian insufficiency.(40
) Patients were evaluated using the Structured Clinical Interview for DMS-IV disorders (SCID), a diagnostic exam used to determine DMS-IV Axis I disorders (major mental disorders) and Axis II disorders (personality disorders). The study characterized the prevalence of psychiatric disorders and the timing of onset of clinically significant depression relative to both the diagnosis of primary ovarian insufficiency and the onset of menstrual irregularity. We found that young women with 46,XX spontaneous primary ovarian insufficiency are much more likely than other women to experience depression sometime in their lives. We found that 67% of these women were either currently depressed or had been depressed at least one time in their lives. This lifetime risk significantly exceeds the rates of depression reported in women with Turner syndrome and community based samples of women. The findings suggest that all women with 46,XX spontaneous primary ovarian insufficiency should be evaluated for depression.
Interestingly, we found that the onset of depression in these women frequently occurs after the onset of menstrual irregularity but before the diagnosis of primary ovarian insufficiency. I got a wake-up call from my patient who committed suicide. The subsequent research findings around this suggest that the menstrual cycle needs to be seen as a vital sign of emotional health in girls and young women.