Shining a light on invisible disabilities
4 December 2019
Story by Nthabiseng Noqondo Tlaka
The M2 Foundation for Chronic Illnesses hosted a breakfast event in Pretoria, to raise awareness about invisible disabilities, to advocate for rare and chronic illnesses, and to offer support to those directly affected.
The event was dedicated to honouring endometriosis ‘warriors’ and educating the public on the condition..
The panel of speakers was made up of Mahlatse Mothiba a lupus, endometriosis and fibromyalgia warrior, Isago Mohlala and Gontse Mphela both of whom are endometriosis warriors.
The event enabled the women to create a strong network to support each other and to stand together in educating society about endometriosis. They shared their stories in public, highlighting the common symptoms, challenges and myths surrounding this invisible disability.
“It dates back to 12 years ago when I first started my menstrual cycle. I was told that periods come with pain but I wondered if it was the same pain that I felt. My first gynaecologist visit was at 13 years old when I had extreme pain when on menstruation period. The gynaecologist first said that it was probably a cyst and later said that my ovaries are small.
“When I was in high school the menstrual pains got worse, I missed out on extra mural activities due to extreme pain and even after seeing different gynaecologists who said it [was] all in my mind, it can’t be that bad. I remember writing a three-hour Business Studies exam paper in pain, vomiting, sweating and at that every hour I had to finish the exam. I always tried to explain my pain but everyone thought I had psychological problems.
“On the 22nd October 2017 during the night, I remember being in pain, I literally felt like something is tearing in my abdomen, I decided to see a different gynaecologist. She started talking about my periods and pains, then later went to the scan. She confirmed that my pain is real and diagnosed me with endometriosis. Finally there was a name to the pain! In February 2018 I had a laparoscopy, but the symptoms only got worse after the operation.”
“On the 18th April 2018 when I woke up from my first laparoscopy, I was told, ‘You have endometriosis.’
“After years of unexplained pelvic pain, it finally had a name. I remember feeling so relieved that the doctors had finally found the culprit of my suffering, but to the contrary, I was furious when I realised how severely my doctors had let me down.
“It took almost eight years with unending visits to almost five doctors who could not believe me. They could not recognise the symptoms of a common condition affecting one in 10 women worldwide. I got symptoms when I was still in primary school and it worried me as I was still very young. I was misdiagnosed with conditions like irritable bowel syndrome, pelvic inflammatory disease. I was told that I was seeking attention, Others implied that my symptoms were all part of ’being a woman and growing up’.
“After repeatedly hearing the society being judgmental, I wondered if the pain I was experiencing really was in my head, or maybe I really did just have a low pain tolerance and a weak mind. To this very day, I still struggle with the emotional trauma caused by years of dismissal, judgment, and mockery by doctors.”