Dealing with the Diagnosis of PCOS

By Dr. Gretchen KubackyPCOS, Self-Care

A diagnosis of Polycystic Ovary Syndrome (PCOS), or any other chronic illness, changes your life. The formal diagnosis might have been preceded by years of battling with mysterious symptoms, feelings of inadequacy or shame, the trials of judgmental or unsupportive family members or friends, and a deep feeling of anxiety about just what the heck was going on with you. How does getting such a diagnosis affect you? How do you cope and move forward?

Different people will react to being diagnosed with PCOS or another chronic illness in a myriad of ways. For some, receiving a diagnosis might feel like a relief after a long and exhausting search for an answer. For others, a diagnosis might feel more like a life sentence.

Many negative reactions to receiving a serious diagnosis are common. Fear, for example, might be the most common of all. Receiving a serious diagnosis can feel terrifying for the patient, as they struggle to wrap their heads around what it might mean for them, their family, and their future. Another common negative reaction is anger. Even for those whose diagnosis feels like an answer to a mystery, they might feel angry at the time and energy they have lost searching for answers. Anger might be sparked by thinking about the delays in getting diagnosed and treated. Often, such anger may co-exist with, or even be covering up, deep feelings of loss and grief. People who receive a serious diagnosis like PCOS must give themselves the time and space to grieve and heal. Being diagnosed with PCOS can mean needing to face a restructuring of one’s identity and expectations for the future.

On the other hand, many women experience positive reactions to finally being diagnosed with PCOS. For example, often there is a feeling of gratification at finally having an answer. Without a diagnosis, a woman might have been struggling in the dark for years with mysterious symptoms and dismissive doctors. A formal diagnosis can have a tremendously validating impact on a woman by proving to herself and others that she is not crazy, and that there really is something wrong. Furthermore, getting diagnosed can give the years of preceding pain and confusion a sense of meaning. Rather than struggling against a strange and nameless foe, a diagnosis allows the person to marshal their resources against a specific and well-defined enemy. Finally, a diagnosis provides a label for one’s health problems that can be easily communicated to others. It provides a common language with which to communicate your health concerns and needs.

One other benefit of receiving a formal diagnosis is that it is a necessary and important step in the road to long-term adjustment to chronic disease. Researchers recommend that patients with a chronic disease, like PCOS, should take several concrete steps to begin adjusting to their diagnosis. One is maintaining an active lifestyle, with regular exercise, as this not only boosts your physical health but also improves your mood. Another recommendation is to express one’s emotions fully and constructively, be it to partners, friends, or helping professionals. This is where a qualified health psychologist (like me!) can really come in handy, by helping you learn how to effectively communicate your needs and feelings in order to reduce stress and build supportive alliances with others around you. In addition, researchers recommend that patients actively engage in self-management of their condition, such as mobilizing personal resources, balancing, pacing, and prioritizing your lifestyle, and recognizing and monitoring your own personal boundaries, such as your energy levels and work hours.

Finally, healthy adjustment to a chronic disease involves trying to find the hidden positive outcomes of the disease. While a disease like PCOS can cause numerous unwanted and even traumatic outcomes, such as infertility, there is the possibility that adjusting to the condition may result in improved appreciation of life, an enhanced sense of purpose, better attention to self-care, and improved communication and/or relationships. The road of having PCOS or some other chronic condition is certainly not easy, but it also has the potential for hidden upsides.

References:
de Ridder, D., Geenen, R., Kuijer, R., & van Middendorp, H. (2008). Psychological adjustment to chronic disease. Lancet (London, England), 372(9634), 246–55. http://doi.org/10.1016/S0140-6736(08)61078-8