Today I had a very heartbreaking and emotional meltdown in a completely out of the blue way.
I was watching a film called Brain on fire were a young woman is struck with an unknown illness that no one could (or would) diagnose correctly.
I burst into tears.
The flood gates opened and I could not stop. My son was worried and my mother instantly understood my reaction to the film. To explain my reaction, I probably need to tell my story....
I was 12 when I started getting extremely painful cramps but not just during my period but all the time. It turned so severe that I could barely get out of bed. My friends thought I was faking. My extended family thought it was just woman’s problems and that I should just deal with it. My mother was hounded by family friends saying she was being too soft on me and pandering to my hypochondria. I was 12 years old. A happy, healthy, fit and energetic kid who was barely ever sick.
After being admitted into hospital on the children’s ward I had tests after tests and after a month I was told that it may just be in my head. I was scared and afraid of falling apart. Finally, a gynaecologist decided to go in and do a laparoscopy not really expecting to find anything. I was diagnosed with severe endometriosis and was told that I was the youngest person in New Zealand to be diagnosed (at the time). We later found out there was a 10year old that was diagnosed as well. I didn’t know what that meant and to be honest neither did the doctors.
I am now 30 going on 31 and now 18 years after being diagnosed I am only now coming to terms with how traumatic my experiences were. Things I didn’t realise had affected me so badly until now. Things like waking up after surgery the first time to find my pubic hair shaved for an incision and iodine all over the insides of my thighs. Waking up finding a tube between my legs and not knowing what it was (they never explained what a catheter was and that I would be having one). Being told after 2 surgeries that I may never have children.
At 12 years old.The embarrassment of fainting during classes in high school, school discos and at social activities. The embarrassment of having sex for the first time and being in so much pain that it took days to recover. These are things that flooded back to me while I watched this film about a completely unrelated disease.
But it was the same struggle to get answers and it hit me like a tonne of bricks. So, my mother and I have cried and talked, cried and discussed, cried some more over a lost childhood and a pretty shitty start to becoming a teenager. I cried out all my pain and soothed wounds I don’t even know were there.
I wanted to share this experience with you beautiful brave ladies because I know you understand. I know how important it is to not let things fester and swallow you up when this disease becomes all consuming.
Some scars are not on or in your body!