Why are women turning to self-diagnosis?

The opinions expressed in this article are the writer’s own and do not reflect the views of Her Campus.

This article is written by a student writer from the Her Campus at Nottingham chapter.

For many women, getting medical treatment feels like an impossible task, and the
process of going to the doctor’s is often an invalidating experience. According to the
CT Health Foundation, women and racial and ethnic minorities are 20%-30% more
likely to be misdiagnosed than white men. This is a pervasive issue: a survey
undertaken by Higgs found that 24% of women experienced a misdiagnosis of a
gynaecological condition, meanwhile studies have found that 80% of women with
autism have been misdiagnosed. Issues of misdiagnosis could be a result of a lack
of research into women’s health, and a lack of female participants in previous health-
based research. Medical research has heavily focused on cis-gender men,
neglecting the experiences of other gender identities; research has been undertaken
on men and assumed to be applicable to other gender identities, leading to
misdiagnosis, misunderstanding or health conditions being overlooked.

Beyond misdiagnosis, women are often met with invalidation when seeking medical
treatment, as reported by The Washington Post “a number of studies support the
claim that women in pain often are not taken as seriously as men.” A research study
conducted by the Department of Health & Social Care, published in April 2022, found
that 4 in 5 women felt there were times when they – or women they knew – had not
been listened to by health care professionals.

Given the above, it should come as no surprise that many are turning to self-
diagnosis. A writer for Women’s Health magazine recounts her own experience of
medical neglect, stating “I’ve all but given up hope of a formal diagnosis and have
instead turned to self-diagnosis to validate my own reality.” The Intake surveyed
1,000 Americans regarding their relationships with self-diagnosis – the focus in this
study was not on gender, but generational differences. The study highlights a
potential benefit of self-diagnosis, as 82% of the 43% who followed up with a medical
professional after social media self-diagnosis had their diagnosis confirmed. As
women face invalidation and misdiagnosis, researching their suspected conditions
before attempting to receive a professional diagnosis can increase their confidence
and provide a sense of validation that healthcare does not always provide.

Considering the gender gap in the diagnosis of neurodivergence, self-diagnosis can
be an incredibly useful tool. Neurodivergence in women is often internalised,
meaning it is ignored in early childhood as they may not be outwardly disruptive.
According to the Brain Charity, it is estimated that the most common age for women
to be diagnosed with ADHD is late 30s to early 40s, while the most common age for
boys to be diagnosed with the condition is 7 years old. As a result, women may turn
to TikTok and Instagram creators who present personal experiences with
neurodivergence and symptoms of ADHD, OCD and Autism less spoken about.
Recognising these symptoms may give women the confidence to seek a
professional diagnosis.

While self-diagnosis can be a viable option, it remains true that to receive treatment
it is necessary to see a medical professional. It is also important to consider that not
all presentations of certain illnesses (ie. ADHD) on social media are entirely
accurate, or as broad as they need to be. Self-diagnosis is not a means of solving
the gender health crisis but is – instead – a symptom of a system that is clearly in
need of reform.