PCOS Awareness Month: Lorna Berry
This September, we will be celebrating PCOS Awareness Month on our blog, The Monthly.
We had the honour of speaking with Monash University committee member, Lorna Berry, to discuss her lived experience with PCOS and how it led her to become a global representative for the condition. We'd like to thank Lorna for her time and her honesty in sharing her story with us.
*Please note, this blog contains topics such as diet culture, weight loss and other topics that some may find distressing.
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Q. Can you tell us a bit about yourself and your journey with PCOS?
A: I was not diagnosed with PCOS until I was 32, and that was only when I had advocated for myself for over 2 years; it was a real battle. There were signs there from the age of 12 or 13 that really should have been recognised by doctors, but were ignored, even when I asked questions. One doctor told me to starve myself. I did!
Q. How old were you when you first started noticing symptoms, and what did that look like for you?
A: 12 or 13, I put on a lot of weight, I was socially isolated and bullied at school for the very same absent cycle, and when it did come, it was heavy and painful.
Q. What was your experience like getting diagnosed with PCOS and how long did the diagnosis take?
A: Hard. It was like a battle, like going to war in actual fact. I remember thinking that there was more at play and that was something not right.
Q. How did receiving your diagnosis impact you emotionally and mentally?
A: I felt validated, like the missing piece of the puzzle had appeared.
Q. What are some of the biggest challenges you've faced living with PCOS?
A: Managing weight, I worked in the weight loss industry for over 20 years, I had a boss who used to hound me for being a few kilos above a perceived 'healthy weight'; they did not believe me and thought I was being lazy and using excuses. That was far from the truth. I have had people say that weight is a mindset. My response was that, based on mindset, I should be 50 kilos; there is not much comeback for that. It took a long time for me to get pregnant at age 25; really, the doctor should have questioned what was going on at the time.
Q. What support systems (friends, family, community) have been most helpful for you in your journey?
A: I have found amazing support within the PCOS community. I have made life-long friends from this.
Q. You're a committee member for the Centre for Research Excellence in Women's Reproductive Health. Can you share a little bit about the work you do there?
A: I have been involved with PCOS guideline development, PCOS name change and other studies over the years. I was a volunteer for close to 20 years, spreading the word and advocating for other women.
Q. What changes do you think need to happen in healthcare or society to better support those with PCOS?
A: The name is misleading; people wrongly assume that it is just a disease of the ovaries, and they think it's only about fertility. The reality is that it affects many areas of the body and is a lifelong condition that changes throughout life.
Q. For someone newly diagnosed with PCOS, what advice would you share?
A: Go out and find support. Be proactive, educate yourself, and use the resources available. Explore the ASKPCOS app, and take it one day at a time.
Q. What does PCOS Awareness Month mean to you personally?
A: Raising awareness is important; early diagnosis and early intervention is key. This would have helped me as a young teen massively, and could have prevented years of dieting etc.
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We'd like to thank Lorna for her time, and transparency with us. As we continue to celebrate PCOS Awareness Month, we encourage you to continue this conversation, educating yourself and others around you on PCOS. To learn more about PCOS, head to our blog 'Understanding PCOS: A Guide to PCOS Awareness Month'
We also encourage our readers to participate in Monash University's current survey to change the medical name and terminology behind 'PCOS', advocating for a more inclusive and clearer understanding of the condition. You can complete the survey here.