“I believe I have been one of the very few women in the world breastfeeding in menopause. I am 36 years old and in October 2022 I had to remove my uterus, cervix, ovaries and tubes. At that time my baby was 5 months old and choosing to do the surgery was the hardest decision I had to take in my life. I have the BRCA1 gene mutation. If you don’t know what it is, see Angelina Jolie and Bianca Balti. On top of this, I have endometriosis and adenomyosis. If you don’t know what it is, see Emma from the Wiggles or Giorgia Soleri. I had one surgery for endometriosis excision in 2020, and another one in 2021. This means that in 3 years I have had 3 surgeries (and one child birth). Those were the years that I was supposed to enjoy moving in a new country (I moved from Italy to Australia), instead I had to deal with chronic pain in my back and pelvis, burning legs, brain fog, fatigue, anxiety, body changes… I am not the same person as I was before all of this happened. Back in Italy, I was a researcher with a passion for digital skills. My commitment to making my passion an actual job led me to where I am today, a Data Science Trainer for the University of Sydney, sharing what I have learnt in all these years with other researchers. I have the flexibility to work from home and this helps me a lot in dealing with flares. I have had moments in the office in which my pain was so bad I couldn’t move, but I have always been very good at hiding it. I am still not sure why I try to hide it. It might be because I don’t want to put people in the difficult position of not knowing how to deal with this (now that I am writing this down if feels quite absurd!), maybe I am tired of having to explain to everyone (medical professionals included) what my condition(s) are actually about, maybe I don’t want to play victim. I do a job that I like, I am young, I live in a beautiful city with my husband and my two daughters (my blessings, considering that endometriosis can cause infertility and that, well, without a uterus it’s pretty impossible to get pregnant), a family back home that supports me and friends that I can count on. Nonetheless I can’t seem to be able to fully enjoy any of these. It’s simply not fair. I feel so sad, angry and full of resentment. I am sad because I am living the life I always wanted and I can’t enjoy it. I am angry because not even medical professionals are fully aware of what these conditions are. I am full of resentment because I do believe I have a disability that should be recognised as such. The CDC describes a disability as “any condition of the body or mind (impairment) that makes it more difficult for the person with the condition to do certain activities (activity limitation) and interact with the world around them (participation restrictions)”. Well I had to stop practicing certain sports. For sure I have been impaired in attending work or social events. Despite this I have a positive attitude and I try to react, most of the times. Yoga is the only physical activity actually giving me some relief from my pain and this pushed me in becoming a yoga teacher myself, to better learn how to help my own body and to help others with my same conditions (and another way of following my passions, as I love teaching). I found myself a job that would give me the flexibility to stay home and rest, if needed. But I have good days (meaning I can hide my pain) and bad days (meaning pain is impossible to hide and also my mental stability just collapses). The bad days are very bad. Waking up in the morning requires a lot of effort and I feel stuck in a situation that I know for a fact it’s not going to improve. In my bad days strong medications are the only things that help (although they only numb the pain, because the pain is still there, always). But they come with a lot of side effects and I am never sure what’s best, the pain or spending the whole next day feeling hungover. I am so tired. I promised myself I would have a 2023 hospital-free but I am now in the process of getting ready for another surgery, a preventative mastectomy. I have medical trauma. Just having to talk about this next surgery or even listening to the surgeon makes me cry and panic. I can’t deal anymore with hospitals, needles and stiches in my body, the scars, having to leave my kids for weeks, taking time off from work and not being able to practice yoga. In my bad days I feel like this is all too much to handle. The feeling is that it doesn’t matter what I do, all the strategies I put in place, all the hard work to try and live a normal life despite everything I am going through, it’s all useless. My career has been impacted by my illnesses and my relationships with my loved ones too. But no one sees this. Today I went to the doctor to get my flu shot. He asked if I had a chronic condition and I said “Yes, I have endometriosis”. The doctor started laughing claiming that endometriosis is not listed among the chronic conditions and it’s not a good reason for getting the flu shot for free. I didn’t say anything and I regret it already. I would like to explain to that doctor that a flu would pile more illness onto a body that is already tired. I would like to tell him that, by the way, I didn’t ask to have it for free and there is no need to laugh and belittle a condition that is not even rare! Endometriosis affects 190 million of reproductive age women and girls globally (WHO source). But no one sees it. I don’t want others to know anything about what living life with an invisible illness is, I want others to be able to see it, because only by seeing it they would understand and I wouldn’t need to use words. So here I am, a woman menopause induced at 35 years old while taking care of a 5 month old and a 6 year old, living in a foreign country far away from my support network, trying to balance a life and a career with a chronic condition that people still laugh at. I have been fighting so much to advocate for my conditions and now I am so tired I don’t even have the strength to describe my conditions. My question for others is what do I have to do to help you help me? What do you need to be able to understand what’s going on with me and why sometimes I loose it? I have tried so many times to tell you but you won’t believe me so… what do you want to see?”
Giorgia
Sydney, Australia