“Because nobody believed me.”
“Because nobody believed me.” Living with two rare conditions and a lifetime of fighting to be heard.
“It’s very rare.”
Those are words I have heard throughout my life.
First, because I was born with gastroschisis, a rare congenital condition where my intestines developed outside my body before birth. Later, because I was diagnosed with one of the rarest forms of endometriosis – thoracic endometriosis, affecting my diaphragm and lungs.
Sometimes I wonder what it feels like to have a body that doctors immediately understand. I have never known that feeling.
A rare beginning
I was born in Lithuania with gastroschisis. Nobody knew if I would survive. I underwent major surgery shortly after birth to place my intestines back inside my abdomen. Because of the complexity of my condition, my anatomy has never been like everyone else’s. My organs developed differently, and I have lived with gastrointestinal problems throughout my life. As a child, I was active. I loved dancing and sport. But afterwards, I often had severe abdominal pain. I simply accepted it because pain had always been part of my life.
When I was around 13 years old, I started my periods. The pain became unbearable. I would vomit, curl up in agony and sometimes be unable to stand. People thought I was trying to avoid school. Others thought I was exaggerating. I was given different diagnoses, antibiotics and strong painkillers, and over time I developed allergies and intolerance to several medications.
When people don’t believe your pain for long enough, something changes inside you. Eventually, you stop asking for help. You learn to suffer quietly.
The moment someone finally believed me
Years later, I underwent abdominal surgery. Doctors found endometriosis growing in the muscular layer of my appendix. At that time, nobody explained what endometriosis really was or what it could become. After moving to the UK in 2014, my symptoms continued to worsen. I underwent further surgery, and once again the findings shocked the surgeons. Every surgeon who has operated on me has said the same thing.
Because I was born with gastroschisis, my organs were not positioned normally. Over the years, severe adhesions and endometriosis had caused my bowel and other organs to become twisted, stuck together and pulled out of their natural position.
More than once, after surgery, I was asked:
“How were you living with this? How did you tolerate so much pain?”
My answer was always the same.
“Because nobody ever believed me.”
Those words have stayed with me. For years I thought maybe the pain was normal. Maybe I was weak. Maybe everyone else coped better than I did. Then, for the first time, a surgeon looked at what was inside my body and confirmed what I had known all along.
The pain was real
When endometriosis reached my lungs. Most people think endometriosis only affects the reproductive organs. Mine spread to my bowel, diaphragm and lungs. I suffered four collapsed lungs before thoracic endometriosis was recognised.
I have since undergone two thoracic surgeries, including the removal of part of my right lung. Even today, I still find myself educating healthcare professionals.
Recently, during a gynaecology appointment, I pointed to my chest while describing my pain.
The doctor asked,
“Why are you pointing to your chest?”
I answered,
“Because that’s where my endometriosis is.”
No woman should have to explain that while sitting in front of a healthcare professional asking for help. Living with invisible illness. Today I live with Stage 4 endometriosis affecting my bowel, diaphragm and lungs. I continue working because financially I have no other choice, although many days I go to work in severe pain.
People often tell me,
“But you look so well.”
Invisible illness doesn’t have a certain look. Behind my smile is a body fighting pain every single day. I am currently waiting for further surgery. The waiting is one of the hardest parts.
Why I am telling my story
I am not sharing my story because I want sympathy. I am sharing it because I want change. Living with a rare condition from birth taught me resilience. Living with thoracic endometriosis taught me how important awareness is.
No patient should spend years trying to convince people that their pain is real. No woman should have to explain that endometriosis can affect the lungs while struggling to breathe.
Rare diseases may be uncommon. But the people living with them are not invisible.
If my story helps even one healthcare professional recognise thoracic endometriosis sooner, or helps one woman feel believed, then everything I have been through will have had a purpose.
Because the most powerful words a patient can hear are not,
“It’s very rare.”
They are,
“I believe you.”
Vitalija Djakova lives in South Wales and was born with gastroschisis. She lives with Stage 4 endometriosis affecting her bowel, diaphragm and lungs (thoracic endometriosis). She has undergone multiple surgeries, including thoracic surgery, and continues to live with complex chronic illness.