“No One Told Us”: Menopause, Marginalisation, and What I Learned Along the Way

This thesis began as a study of healthcare systems, marginalisation, and digital resistance. But as I listened to stories and followed threads of silence, I found myself tracing something more personal: the quiet legacy of menopause in my own family, and the many ways it remains invisible, even to those living through it.

Illustration by Jedi Noordegraaf / Ikon Images

My thesis, completed at Linköping University, is titled: “No One Told Us: Menopause, Marginalisation, and Digital Resistance to Medical Neglect in Sweden”. You can read the full thesis here.

It explores how cisgender women, with a focus on migrant and racialised individuals, navigate a healthcare system that often marginalises or ignores menopausal health. It asks what happens when care fails, and how women are turning to digital communities to reclaim support, understanding, and agency.

✨ Why This Matters

Though my research is based in Sweden, the struggle it reveals is global.

Menopause remains a medical blind spot: rarely discussed, rarely researched, and even more rarely centred in care, even when perimenopause and menopause are often described as universal, in the sense that all people born with a uterus who live long enough will undergo them, women described it as a time of invisibility, disconnection, and confusion. They felt dismissed, pathologised, or simply ignored by healthcare providers.

Yet what I also found was a movement growing quietly in the corners of the internet. Women find one another, creating spaces to share stories, exchange advice, and redefine what care looks like on their terms.

These digital spaces (Facebook groups, online forums, podcasts) are more than informational. They are relational, emotional and political.

💬 Key Findings

• Medical neglect is not isolated: it is structural. Many women described being misdiagnosed, patronised, or told to “just deal with it”.

• Peer communities offer an alternative form of care: trusted, responsive, and culturally aware. For some, they became more reliable than formal healthcare systems.

• Using the concepts of Garland Thomson’s “misfitting” (when bodies don’t conform to biomedical norms) and Tuana’s “strategic ignorance” (when institutions choose not to know), I unpack how exclusion operates in subtle and not-so-subtle ways.

• Though digital spaces are not without flaws (algorithmic bias, exclusion, and gatekeeping), they are vital arenas of feminist resistance and knowledge production.

🌱 My Learnings

What stayed with me most were not just the academic insights, but the quiet, personal awakenings and mournings. As I reflected on the stories shared by others, I began to turn inward and explore the women in my lineage. I wondered how they experienced menopause, and what was left unspoken in their lives. I came to see that our menopause is entangled with theirs, not only in a bodily sense, but emotionally, culturally, and relationally.

One of the most unexpected things I observed was how many women, regardless of whether they ever wanted children, still carry a mourning for their reproductive years. There is a kind of loss that is difficult to name because it is not just about fertility. It is also about youth, identity, the ideal of infinite productivity, and social visibility. And for many, this mourning is carried in silence.

Another paradox stood out to me. Menses are becoming less taboo in many spaces, yet menopause remains shrouded in discomfort and silence. We have made important strides toward period positivity, but menopause is still treated as a punchline or a phase to be endured quietly. It is often framed as a decline rather than a transformation. This has very real consequences, both economically and personally. Because this phase is still unspoken, many of us cannot count on support, not even from our own families.

Through this research, I have come to see perimenopause not as a prelude to loss, but as a transformative process in itself. It is not an end. It is a powerful space, more closely aligned with ancestral knowledge, wisdom, and growth than with decline.

🌐 What Comes Next?

This work is a contribution to feminist health scholarship and a call to centre lived experience in how we design and deliver care. Menopause is not just a medical event. It is a social, cultural, and emotional transition that deserves recognition, dignity, and support.

It also acknowledges that not all people who identify as women go through menopause, and not all who experience menopause identify as women. There is an urgent need to expand this research to include the experiences of trans people navigating menopause, including those facing compounded forms of exclusion in healthcare.

Finally, this research is a reminder that when institutions fail, the community often steps in to fill the gaps. And more and more, that community lives online, creating networks of care, resistance, and collective wisdom.

I'd love to hear your thoughts and experiences! You can find the Thesis here.