The Lived Experience of Menopause
Menopause is a natural and normal experience. Yet like other women’s health issues, it is poorly understood, under-researched, and often dismissed. I created a journey map of women's lived experience with menopause. My goal is to bring visibility and validation to their stories and create an artifact that promotes discussion and further exploration on this important topic.
The medical profession treats menopause as a health condition that marks the end of a woman’s reproductive years. Formally, menopause describes the time that marks the end of one’s menstrual cycles and typically occurs in a person’s 40s or 50s [Cleveland Clinic]. It’s diagnosed when an individual has not had a menstrual period for at least 12 months. Menopause is preceded by “perimenopause”, a time when the body transitions to menopause, followed by “postmenopause”, the time after menopause is reached. It is commonly known for its constellation of undesirable symptoms including hot flashes, mood changes, vaginal dryness, low libido, and weight gain.
However, menopause is more than a medical construct. It’s a healthy, natural, and dynamic process. It’s also a time when women experience psychological and social changes. Having spent a lifetime managing their fertility, sexuality, and bodies within complex and controlling social and political systems, women are no longer defined by their reproductive potential. New roles and responsibilities are formed as women’s estrogen levels decline. Their value in society and livelihoods is questioned and re-negotiated.
Further complicating the menopause experience is the myriad changes and challenges women face in middle age. This may include changes associated with ageing, managing chronic conditions, parenting older children, caring for elderly parents, managing the death of a parent, and caring for a partner. It is also uniquely shaped by determinants like social and cultural background, education, marital status, and employment and economic situation [Namazi et al. 2019].
The goal of this design research is to understand the lived experiences of self-identified women who are postmenopausal. I reviewed online stories (blogs, video diaries, discussion groups) and conducted 1:1 in-depth semi-structured interviews with 10 individuals based in the US and Canada in 2018. Interviewees graciously shared their stories with me, often with the intent to break the taboo around menopause and pass on lessons learned to the next generation. All participants who I spoke with naturally experienced menopause (i.e., not early or premature menopause).
The reason I pursued this work is because of the dearth of stories and knowledge about women’s lived experiences on this topic. Despite affecting most women, menopause is shrouded in shame, secrecy, and silence. Like many other women’s health issues, women experiencing menopause are often misunderstood and dismissed by the medical profession. It was important to me to create a common framework to understand, share, and validate these experiences. Unlike most research on menopause to date, the goal here is to privilege the interests and perspectives of the participants over the researcher [Eun-Ok Im 2007]. Below, I offer a journey map of the experience of menopause and my key takeaways from this work.
A note about language:
For the purposes of this article, “menopause” broadly refers to the experience before, during, and after a woman’s menstrual cycle has ended, unless otherwise stated.
Language in this article reflects the language used by interviewees (e.g., symptoms, perimenopause, etc.).
I have chosen to discuss/represent menopause as a women’s health issue, using gendered language and she/her pronouns. However, it is important to acknowledge that menopause is experienced by people who do not identify as female. Stories from individuals who are gender nonconforming are taken into account but are not fully represented in this analysis.
THE MENOPAUSE JOURNEY
Menopause is a complex experience. At the individual level, physical, emotional, and mental changes in the body serve as tangible (though not always obvious) signals of menopause. It is also experienced as a social transition wherein women re-evaluate their identities and relationships. The map below represents a journey of the menopause experience, described in 5 stages: Early signs, Confirmation, Searching, Acceptance, and Renewal. Despite the structure of the map, the experience of menopause can be messy and non-linear. Every experience is unique.
Women rely on other women for support and validation
Women experiencing menopause find the greatest empathy, trust, and validation from other women. This may include friends, family, coworkers, acquaintances, healthcare providers, or sometimes even strangers. On the contrary, men, including romantic partners, were often seen as lacking empathy or engagement in the menopause experience.
Diagnosis offers confirmation but no clear answers
Diagnosis serves as a helpful tool for women who are seeking confirmation of their perimenopausal (and sometimes menopausal) status. Many women self-diagnose after informally consulting female friends or family members. Few seek a formal diagnosis from a healthcare provider. Though affirming, diagnosis itself doesn’t necessarily provide clarity around their primary concern: managing unwieldy symptoms.
Healthcare providers play a limited role
As they navigate the healthcare system for support, women find that their concerns are often dismissed or minimized, forcing them to self-advocate and become more assertive in their help-seeking behaviors. Women note that healthcare providers are most helpful when they are seeking out a prescription or specific medical treatment such as hormone replacement therapy. Most prefer female providers, describing them as empathic and more likely to be knowledgeable of women’s health issues.
Natural remedies dominate menopause management
The duration and severity of symptoms is unpredictable. Without clear, holistic, and reliable strategies for managing menopause, women often experiment with a combination of pharmaceuticals, lifestyle changes, and natural remedies. Symptoms are individually tackled as they come and go. Given the perception of menopause as a natural biological process, women tend to prefer natural and non-invasive approaches where possible. Many end up trying unproven home remedies that they have learned about through word-of-mouth, turning to pharmaceuticals when they feel they have exhausted their options.
Sexual and reproductive roles and expectations are re-examined
Menopause relieves women of the burden of fertility. No longer bound to their heteronormative and reproductive roles, women describe a newfound freedom in renegotiating their relationships with their children, family, friends, and romantic partners. Most fostered stronger bonds with other women. Some divorced their male partners. And others felt more fluid in their sexuality and open to new forms of intimacy. For instance, some women described fostering deep non-sexual companionships with other women in which they would spend much of their time together, sharing living space, resources, and caring for one another. A couple of women expressed interest in exploring new sexual relationships with both women and men.
Self-blame, guilt, and grief shift to empowerment
Menopause is a journey of emotional highs and lows. In the early stages of menopause, women tend to blame and shame themselves for “losing control” over their bodies. They feel responsible for their menopause as if it is their fault or failing. As they progress through their journey, women come to terms with ageing and menopause, and grieve the loss of their younger selves. To quote an interviewee: “no one cares about you when you’re an old woman”. However, women persevere. With time they feel more empowered to self-advocate for their needs, particularly within the healthcare system. Moreover, they embrace this new phase in their lives, feeling free to do as they please without the social pressures or judgements they once faced.
Menopause is a catalyst for self-betterment
For the middle-aged woman, menopause serves as a disruptive reminder that her time is limited. Many see this as a unique opportunity to re-evaluate their outlook and purpose in life. Some expressed gratitude for menopause, viewing it as a biological catalyst for change or “wakeup call" that their male counterparts don’t necessarily have. With the benefit of ego, maturity, hindsight, and foresight, they seek to create positive and meaningful impact in their older age.
Challenging stigma and fostering dialogue across generations is key
Women agree that there is a need to openly talk about menopause. Though it is inevitable, most women do not discuss or learn about menopause in their younger years and feel unprepared and overwhelmed once it arrives. Relatable and positive role models are lacking. Women stressed the importance of sharing stories of menopause in order to enable younger women to better cope with and embrace this experience.
Like other areas of women’s health, menopause is a taboo topic, revolving around a woman’s sexual and reproductive capabilities. It is poorly understood and woefully under-researched. The latter is particularly true as we don't have a good understanding of the menopause experience within underrepresented and marginalized communities such as women of color or those who are gender fluid. It’s important to showcase the diversity of experience and bring visibility to menopause. This way we can better support and enable people during this time in their lives from a physical, psychological, and social perspective. I hope this work prompts discussion and further exploration. Please reach out if you have feedback.
To participants: Learning about your personal journey with menopause was a deep privilege and has given me perspective and optimism into this unique stage of life. Thank you for your time and generosity.
Tags: Information Design, Healthcare Experience, Menopause, Women's Health, Journey Map