How Lois Balshaw is confronting the UK’s systemic failures in women’s healthcare

Over one and a half million women in the UK suffer from endometriosis, a chronic condition presenting, most often, as severe, debilitating pain accompanied by organ and fertility failures or complications. Yet 78% report that doctors have dismissed, belittled and ignored their symptoms. How long will millions of women endure this isolating silence, and what does it say about how we value women in society?

Lois Balshaw is the founder of The Code Red Club, an organisation set up to aid people living with and educate people about chronic gynaecological conditions such as endometriosis. In an interview with me, she expressed how, despite experiencing a lack of care from individual doctors, she believes this systemic neglect for women with endometriosis begins at the top. When it comes to the governmental and NHS “top dogs”, Lois feels women like her “are shut out, and there is no love…no care…[and] no consideration for us”. This uncompassionate care directly impacts how and what things are prioritised in medical research and NHS funding, which she believes ignores many areas of the NHS, including the gynaecological departments.

Lois discussed how she had experienced belittling and dismissal from doctors regarding how painful her periods were and how she was medicating her pain. Although this angered her, Lois understood that these doctors may not have intended to be cruel but were, rather, victims of chronic government underfunding. Therefore, Lois understood her experiences of dismissal and misunderstandings to be a response to “the lack of care for the NHS in general” by the UK government, resulting in gynaecologists becoming emotionless animations through years of restrictions on the NHS. Despite this, whilst chronic underfunding plagues the NHS, the resulting dismissal of women’s pain reflect deeper negative cultural and institutional biases that should be addressed further.

These negative biases towards women’s pain have trickled down from the UK government to women’s everyday lives. Lois felt that, outside of the NHS, her endometriosis was still not understood by close circles and was even sometimes treated as a barrier to being able to love and have fun with her.

“I think having endometriosis [means that in]…a lot of relationships…the love can be conditional. I love you when we can go out and do stuff, but [not] when you’re ill in bed.”

She accredited this to a misunderstanding of her condition, forcing Lois into the role of educator and advocator for endometriosis, which can be exhausting and fruitless. Regarding her family and friends, Lois appreciated that “there’s only so much they’re going to understand on their own”. However, they continued to try and understand and be supportive of her endometriosis. In contrast, there are “those people, sadly in society, that don’t understand, don’t want to know [and] don’t want to support you and, unfortunately, some of them are gynaecologists!”

Therefore, this misunderstanding translates to a conditional or lack of love and care towards people with endometriosis. This has transcended the boundaries of governmental, medical and personal spheres and has made living with the condition harder to diagnose, research and fund and more challenging and isolating to live with. This is why Lois feels that it is vital to have a support system of people who love and care for you unconditionally, “and anyone who doesn’t love and support you through [your endometriosis], you don’t need them, and you need to go find people that do.” This is why Lois has taken it upon herself to form the Code Red Club.

Lois initially started the Code Red Club at Durham University during her final year and has recently been “rebooted”, planning to become national in no time. While conducting the society at university, Lois held a support group for endometriosis awareness week, which I attended. It was the first time since experiencing my endometriosis symptoms at twelve years old that I felt able to discuss my experiences of pain and dismissal in an inclusive, nonjudgmental environment with other women who had similar experiences to myself. After the support group, Lois noted how a participant had approached her privately and sincerely thanked her for making her feel less alone, which moved Lois to tears; “I finally [felt] like I [had] become part of something and…when I tell you I went home and cried…because something I [had] done [had] made somebody feel so accepted, it was like the best feeling in the world.”

One of Lois’s plans for the Code Red Club includes giving talks to secondary school students about what’s not normal in periods and the menstrual cycles and what women should be identifying from an early age. This is because she felt that “there was no mention of endometriosis, PCOS” (Polycystic Ovary Syndrome), or other gynaecological conditions in school when she was growing up. Lois feels it is vital to teach this from a young age and incorporate painful or irregular periods into the conversation to prohibit girls from isolating themselves and experiencing negative self-thoughts due to being different to their peers with uncomplicated periods. Lois exclaims how important it is “to be teaching young girls that it’s…not your fault and that you aren’t to blame, and you shouldn’t have to go through it”.

Lois’s Code Red Club is a beacon of hope, but systemic changes are needed if long-lasting and impactful changes in all areas of UK society are to be seen. Endometriosis must no longer be an afterthought in medical education, government policy, or our homes. Women like Lois and myself have suffered too long in seemingly silent agony. The new report published by House of Commons Women and Equalities committee chair Sarah Owen earlier this month is the first step in a long journey where the government is hopefully beginning to recognise this long, painful and isolated road many women have had to walk. We must continue amplifying these voices to ensure endometriosis and other chronic conditions receive the attention and care they deserve.

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