Meet Our Advocates: Kath Mazzella OAM
Updated: Nov 3, 2018
“Experience is not what happens to a man. It is what a man does with what happens to him.”
– Aldous Leonard Huxley
I received an email from Kath Mazzella OAM a matter of weeks after the launch of the Global Goals Australia Campaign. I could almost hear her passion in the words she had written in her email, and I knew this was the kind of person I wanted to campaign with.
I met Kath and her husband, Tony, at a café in Perth and was so touched by her enthusiasm and her dedication and was thrilled to hear she wanted to come on board as an advocate of the Global Goals Australia Campaign.
Caterina: Kath, your Undies for Better Understanding Campaign is certainly unique. Tell us a little bit more about it.
Kath: The Undies for Better Understanding Campaign, or U.B.U. as it is now known, is focused around the theme of undies in order to present a really exciting opportunity to create better awareness of gynaecological health issues. It’s a great way in which we can start to open up the conversation about this topic. Tony and I host a workshop in which we help people decorate undies. During the workshop, we tell our story and give attendees an opportunity to participate in an open dialogue about gynaecological and sexual health and the mental health stresses which come with the physical stresses.
Caterina: What inspired you to start this campaign?
Kath: I am a gynaecological cancer survivor. This, coupled with the moment when I discovered my daughter’s period pain was not “just a woman’s problem” but was, in fact, endometriosis and polycystic ovaries, was my real motivation. It has affected my life personally through both my daughter’s and my suffering. Through this personal experience, I began to discover millions of women with many gynaecological health conditions without a metaphorical voice. The stigma is strong. I made it my personal mission to find a way to dispel their fear and their anxiety through adding colour, life, humour, music and dance. These started conversations.
Caterina: It is so inspirational to see you turn such a burden into something so positive. Do you have any particular stories which have impacted you in your work?
Kath: There is one story entitled “The Shadow That Consumes Me”. Would you mind if I read you a brief excerpt?
Caterina: Not at all! Please go ahead.
Kath: “My earlier memory of this disease is of my mum. I was about 5 years old, and my dad kept telling me to be gentle. “Don’t touch Mummy’s tummy,” he would say. Mum had just come home from hospital after having a hysterectomy for Endometriosis.
Thankfully for me, both of my parents were always actively involved in the research and awareness of Endo and were both in the health industry, so they knew what to watch out for.
My symptoms started when I had my first period at age 9, which no one could explain. It only lasted a matter of months, but I still remember to this day being quizzed about whether my dad was sexually abusing me. It was very upsetting.
By age 12, I started to experience horrendous pain, and by 13, I was surgically diagnosed as having Endometriosis, just like my mum.
The details of this disease are such that I could write a book! I was, for the most part, a miserable teen. It is a time in my life that I feel I missed out on. I was not involved in too many social activities with my friends because I usually didn’t feel up to it. I never had a boyfriend, and I never expected I would find one because “Who would really want to make this a part of their lives when they had a choice not to?” I was hardly ever at school and in hospital more than I care to remember. Princess Margaret became my second home. I finished my school year from bed and quit completely shortly thereafter. It was a difficult time.
I later featured in a newspaper article in The West Australian and, from this, met two other young girls like me. For once, I didn’t feel so alone in this. Our mums then rallied together to get us involved with the Starlight Foundation. At 16 I received my wish. It was the light at the end of the tunnel, at a time when I really needed it.
Work was always a challenge. Each time I found a job, I’d have to hope that they could be patient with sick leave because it was inevitable that I would use all of it! I am thankful to have an understanding boss at the moment, but it is disappointing that others can’t or choose not to understand the complexity of the situation. I once had a manager ask me not to bring my mood swings to work because she didn’t want me to upset the other staff! Some people can be so insensitive.
I am now 25 years old and have had six laparoscopies, two D & C’s, and three colonoscopies for the treatment of my disease. I have taken every hormonal therapy known to mankind as well as always having a large concoction of analgesics close by.
Endo is a horrible disease. It is really hard not to be able to say to someone “I have Endo” and for them to know what that means. This is like a cancer. Although the disease is not terminal, it still has the ability to make us very ill; it still requires frequent surgery, constant medicinal treatment; it still removes body parts, and it is emotionally exhausting.
My challenge is now to stay healthy for as long as I can so that my partner and I have the opportunity to develop our relationship like people without this pressure would be able to. We want to enjoy one another, be engaged when it feels right, have a fabulous wedding and THEN think about a family. It is one of the most difficult times of my life. I hate that I feel so pressured and I hate even more that I am taking someone else along for the ride.
All of this sounds like Dooms Day, and it is by no means an experience I would wish on anyone else. But I am okay. I have days where I am angry at the world, I need a hug and a re-charge, but then I get on with life again. You have to…or the shadow consumes you.
I have very supportive family and friends and a partner who loves me and keeps me strong. I couldn’t ask for anything more.”
Caterina: That is an incredibly powerful story, Kath. It really puts the severity of gynaecological health issues into perspective. In the story, the young woman mentions receiving negative reactions about her condition. How do people react to the work you do?
Kath: There are three sides as to how people react. Sometimes people react in one way in particular or a combination of a few.
Some people in positions of power seem to own the knowledge.
Other people have not one idea of anything below the belt and are living in fear.
Then there are the people who lift their eyebrows with great interest to hear the openness at last.
Caterina: When it comes to dealing with those who fall in the second category, what inspires you to continue campaigning in the face of set-backs?
Kath: The responses from placing an advertisement in a women’s magazine. The injustice of their silent suffering inspires me to keep going even twenty years later. It is not right; these women and their partners should not have to suffer. The stigma must be broken to give these women a voice, not to mention the forgotten men who stand alongside these women. There is a lack of knowledge and understanding for the millions of women in the workplace and home, and it has a huge mental effect, which rarely is mentioned in forums of mental health, sexual health and relationships.
Caterina: The work you’re doing is really centred on Goal 3 and Goal 5 of the Global Goals. If the Global Goals are achieved, what do you imagine the field of gynaecological health to be like by 2030 in Australia and in other parts of the world?
Kath: Greater acceptance, greater education, greater empowerment. The the word ‘gynaecology’ will come out of the umbrella of reproductive health, making it a normal and acceptable part of women’s health, ridding it of the shame and embarrassment.
Caterina: That’s an amazing vision. We hope it is eventually achieved. Kath, you have been so inspiring. Would you mind leaving us with one last question?
Kath: Of course!
Caterina: If you could sum up your work in one sentence, what would it be?
Kath: “With knowledge, we are empowered.” Without knowledge, women can suffer lifetime complications; some may even lose their life to them. We can stop this simply by providing open discussions and celebrating our magnificent bodies. Can it just be this simple!?
Nothing heals, helps, cures, mends, builds, clears, stabilises, fixes, balances, restores, corrects, inspires, enables, empowers or enlightens better than the truth.
Caterina: Kath, thank you so much for your time. We look forward to seeing more of you over the journey of the Global Goals Australia Campaign, and we look forward to hearing more about the Undies for Better Understanding Campaign.
For more information about the UBU Campaign, check out their page on our website!