Campaign to End Stigma of PCOS Seeks One Million Supporters 

A campaign aimed at tackling the stigma of Polycystic Ovary Syndrome is aiming to attract support from one million people worldwide.

Un-lipping PCOS has already attracted backing from a number of celebrities and public figures, including Cherie Blair and Sir Rod Stewart.

The campaign is aiming to convince one million people to take the Half Lip Selfie Challenge – in which supporters photograph themselves, with lipstick applied to half of their mouth – a challenge to the traditional British ‘stiff upper lip’ and the public silence surrounding the condition.

PCOS affects one in 10 women, causing some to grow facial and body hair, similar to men. Others suffer male-pattern baldness, put on weight, and have trouble conceiving children.

Sufferers include Victoria Beckham, Jamie Oliver’s wife Jules, actress and singer Kim Marsh, comedienne Sarah Pascoe and Towie star Gemma Collins

But it is rarely addressed publicly, leaving women to suffer in silence, causing mental ill health, social isolation and even family break-up, according to campaign founder Anji Sandhu.

She launched Un-lipping PCOS after a close friend with the condition suffered a mental breakdown and was sectioned under the Mental Health Act because of the trauma and social exclusion she suffered.

The campaign has already launched a range of support tools including PCOS Buddy, an app which helps sufferers to manage their symptoms, as well as a series of training films for doctors, advising them how to treat patients with the condition.

Now Sandhu – a former student at Glasgow University whose work with the campaign was nominated for a World Changing Alumni Award – is planning to take its message to a wider audience.

She hopes that, as well as helping to change the public’s perception of the condition, it might also lead to the introduction of legislation, making abuse and discrimination against women with PCOS a hate crime.

She said:

We want to reach a million people worldwide through our social media channels. The campaign message is a play on the traditional British stiff upper lip, where people would rather talk about the weather than how they feel.  

We want supporters, and society more generally, to face-up to this issue, to talk about it more openly and to stop treating people with the condition like exhibits in a Victorian freak show.

She added:

We are currently reaching out to parliamentarians and celebrities. We are also in the process of seeking sponsorship from companies we want to associate with for the campaign.

We are looking to make this a viral social media campaign that is worthy of the digital age. At the end of the campaign, we want to be looking at the introduction of legislation that will end this discrimination in our society against women who have male pattern hair growth. That will mark a new phase in the work.

PCOS is caused by increased levels of testosterone in women and, while symptoms very between individuals, they can include excessive hair growth, acne, and infertility, among others.

Sandhu, 44, claims to have interviewed more than 200 women with PCOS in clinics across the UK after her friend, Carrie, who graduated with a first-class degree from the London School of Economics, became psychotic as a result of the condition.

She said:

Carrie had ambitions to work for the International Monetary Fund, but the social stigma she suffered as a result of having PCOS led her to be detained in a state mental hospital.

She was fearful and confused by the changes to her appearance, and it began to take a toll on her mental health.

Like many other sufferers, she was humiliated and reluctant to discuss the condition, which led to her becoming isolated and lonely.

Sandhu added:

This is something that affects millions of women around the world. Estimates vary but it is thought one in ten women are affected by PCOS at some time in their lives.

Even talking with family and friends can be problematic, because you don’t know how others will react. In some cultures, it can be met with shame and intolerance.

Young women in western societies feel very troubled and vulnerable because the image of femininity promoted in mainstream media – and now on social media – is one of physical perfection.

Anything less is regarded as failure and, because physical beauty is also equated with fertility, it means women with PCOS can feel they are less than adequate, both as potential sexual partners and mothers.

According to Sandhu, women with the condition are up to seven times more likely to become diabetic as well as being more susceptible to cardiac issues and endometrial cancer.

“It can often lead to other difficulties and conditions,” she said. “Women can begin to suffer from depression and anxiety because they look different. We want to encourage a culture of greater tolerance and kindness and where women feel more accepted.”

Written by: Carlos Alba