Hey Lulu, thank you for speaking to us about your invisible illness today.

Firstly, could you introfuce yourself and what you do?

Hi. My name is Luthiem Escalona, but you can call me Lulu, and I'm a graphic designer at Youswim. 

Can you share a little about your illness and how it manifests in your life?

I've got polycystic ovarian syndrome, which is PCOS for short, and specifically insulin resistance, which means that the insulin in my body struggles to break down the blood sugar in my body. So, the body, in response, sends more insulin in the hopes that this will help break it down quicker. But that essentially means that there's way too much insulin in the body, which then creates low oestrogen, which then leads to symptoms like fertility issues, irregular periods, weight gain, acne, fatigue, skin tags, brain fog, etc.

For a condition affecting so many, there’s still such a lack of awareness and understanding of Polycystic Ovary Syndrome (PCOS). Tell us about your experience of being diagnosed.

I was diagnosed in my late teens. I just came off the pill, and my periods were very irregular, like they were coming every three, four or five months, and I gained a lot of weight quite quickly.
So I went to the doctors, and they couldn't really find what was wrong. They couldn't tell me exactly what was happening. And I went to an endocrinologist specifically, and they diagnosed me with PCOS. It was a very confusing time, really, because they had no solution, and it was not really explained to me why or how it worked.

Many people don’t know what to look for or how to manage their PCOS symptoms. Could you tell us what symptoms you’ve felt and any specific things you’ve found to alleviate some of them, if any?

I've experienced a lot of different symptoms, but mainly irregular periods, excessive body hair, weight gain, struggling to lose that weight, dark skin patches, fatigue as well, and extreme hunger. I used to feel hungry all the time.

There's a lot of different information out there, and I've tried a lot of things throughout the years, but I think some of the most helpful things I've found to alleviate some of my symptoms are in my diet. So specifically, I found that breakfast is one of the most important things that can help because breakfast, you're breaking fast, and it's really important that you don't spike your insulin levels first thing in the morning because that will mean that you just crash from there.

So, having a very high protein breakfast like eggs or I actually started doing an almond porridge recently, and that's been really helpful. And I don't feel as tired or hungry as I used to before.

PCOS, whilst asymptomatic for some, can be very physical for others. Have your symptoms impacted your relationship with your body, and if so, how?

Yeah, I think my symptoms have affected my relationship with my body quite a lot. I think at times, because my symptoms go completely against society's beauty standards, like weight gain and excessive body hair, I often felt like my body was wrong or inadequate. But in recent years, I've come to realise that my body's just doing the best it can and I want to support it and appreciate it and see what I can do to help it even more.

In 2022, a study found people with PCOS were seventy-seven per cent more likely to have anxiety, fifty-three per cent more likely to have an eating disorder, and twice as likely to have depression compared to people without PCOS. Do these statistics surprise you, and have you found your mental health is impacted by PCOS?

It really saddens me how high the statistics are, but they don't really surprise me because, personally, I've been quite affected in terms of my mental health based on my symptoms.

I think there's just too much pressure. Society puts too much pressure on women's bodies, and so we feel like we're working so hard to fit into those moulds, but our bodies are working harder to deal with other things. And so we often feel inadequate or like we're not doing enough or like we're not right. And so that can be really stressful, and it can lead to depression and anxiety. So not surprised at all, but it's really sad. I'm from Venezuela, the country of Miss Universe, so growing up, beauty standards were really high, and for a long time, I was trying to combat my symptoms by working out excessively or, like, cutting out carbs completely and then realising that that was just making my symptoms worse.

And I felt awful. So, it just made me feel like I was never doing enough. I completely understand that people feel stressed and anxious about something like this.

On a day when your PCOS can feel all-consuming, how do you take care of yourself?

When my PCOS becomes a bit too much, I think I like to take a little break and do things that bring me joy. Whether that's going to a gig or wearing my favorite clothes or having a pastry, like, you know, I'm trying my best, so don't put too much pressure and just take it day by day.

In what ways can the people around you support you?

I think the best way to support someone with PCOS is by listening and asking more about what symptoms they're experiencing. Also, do a bit of research yourself because it can be very daunting to have to explain it to everyone. Also, just respect that everybody's going through their own journey, and they'll tackle it in their own time.

So respect, listen, ask, research.