• Thu. Jun 13th, 2024

Living With Chronic Illness: Endometriosis and Body Neutrality

BySasha White

Mar 24, 2023

It is important to start by defining what endometriosis actually is, because before I was diagnosed I had little knowledge of the disease and, like many female reproductive issues, it can feel like it is shrouded in taboo and mystery. 

Endometriosis is a disease in which cells similar to those of the uterus lining grow outside the uterus. Commonly this is on the ovaries and fallopian tubes, but it can occur in other parts of the body. It causes debilitating pelvic pain, heavy periods, pain with bowel movements and infertility, to name a few symptoms. Though each woman’s experience is unique, the universal factor is chronic pain. 

PART 1: PAIN

Managing pain does become easier. I was diagnosed with deep endometriosis in November 2020, meaning the endometriosis tissue is currently located close to my bowels. Chronic episodes of stabbing pain, cold sweats, sickness and fatigue contributed to a downward spiral in my physical and mental health. It is not an exaggeration to say that I hated my body. It was constantly changing and I felt like I had no control over when I was going to feel pain. 

PART 2: ACCEPTANCE

For months I denied having a chronic illness despite knowing that this onslaught of pain I was experiencing was not normal. 1 in 10 women – which is approximately 176 million in the world – have endometriosis and yet somehow I felt isolated, as though I was overreacting. Before diagnosis I was told that period pain is normal, that it is just part of the female experience. When I was first rushed to A&E, my mum thought I had appendicitis, whilst the doctor dismissed it as dehydration. This is a common experience for women suffering from endometriosis. During that time pain, anger and sadness were common feelings. In all honesty, I felt like I was a burden to my friends and family. 

Two years later, and I still feel those emotions. What I have learned over this time, though, is that I have a choice to change my mindset and thought patterns. It is surprising just how connected mental and physical health are – a realisation I have been forced to fully come to terms with over the past couple of years. Actively choosing not to let negative thought patterns affect my overall perspective has been a huge learning curve. 

Self-acceptance is not something that happens immediately, but if we make a conscious effort to be kind to ourselves and realise that our bodies are amazing for the multitude of things they can do as well as the pain they tolerate, we can start to accept that chronic illness is a part of us but it is not who we are. The real goal, then, is to remove all aspects of self worth and validation from the body and the aesthetic standard we see infiltrating social media and the digital media at large. 

PART 3: THE FUTURE

The purpose behind this article is to share my experience in the hope that we will continue to de-stigmatize talking about women’s sexual and reproductive health, as well as push for further funding for research into endometriosis and other female reproductive issues. We have a right to our bodies and a right to talk about our bodies whoever we are and whatever we look like. As debilitating as chronic illness can be, spreading awareness, educating ourselves and having open, honest discussions are all factors which make the experience less isolating so I implore everyone reading this to start (or continue) doing so. To those who live with endometriosis: our strength can never be underestimated. 

Illustration attributed to Mary Buchanan