Cover Ili Sulaiman, co-founder of MY PCOS I Love You

The chef and TV personality speaks to Tatler about her mission to raise awareness about polycystic ovary syndrome (PCOS) in Malaysia

An estimated 5 to 10 per cent of women aged 12 to 51 in Malaysia are affected by PCOS, a common hormonal disorder with a variety of symptoms including acne, weight gain, infertility and more. Left untreated, these women are at higher risk of developing Type 2 diabetes, mood disorders and endometrial cancer.

However, the journey to diagnosis and prognosis for PCOS—and many other women’s health issues—is often a long, difficult one; something Ili Sulaiman had to find out the hard way.

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It was early 2016. Ili had just won AFC and Food Network’s region-wide culinary competition Food Heroes. Upon returning home, she immediately got back into the kitchen to run her popular recipe blog, Dish by Ili and host several TV shows. At the time, she also opened her first restaurant and social enterprise, Agak Agak Initiative.

“I started feeling extremely fatigued and my hair was falling out. A doctor told me I had an autoimmune disease so I was on all these medication, inhalers and it wasn’t working,” she shares. It was only when her period stopped when she heard the term ‘PCOS’ for the first time: “My gynaecologist took a look at my blood test results and my insulin was through the roof! She found these ‘string of pearls’ in my ovaries."

Tatler Asia

But the relief at finally getting a diagnosis was short-lived. “All she said was ‘lose weight, take this pre-diabetic medication, stop eating sugar and come back in a few months’. That wasn’t a thorough action plan or solution!” she says. “I did what she said and nothing changed.”  

Ili describes her helplessness at being unable to find any resources online, especially in an Asian context. When she opened up on social media and connected with fellow women with PCOS, she was referred to Dr Christina Tai at Subang Jaya Medical Centre.

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Dr Tai suggested an extensive bloodwork, including tests for conditions associated with PCOS. “I found out I had a thyroid deficiency. It was the reason why I was always feeling lethargic and tired when working in the kitchen or on set for shoots. Other deficiencies include Vitamin D, which also affects your mood,” she says, adding that later she would also be diagnosed with endometriosis.

Adamant that no other Malaysian woman should have to go through her struggles of getting the proper diagnosis and prognosis, the chef and TV personality co-founded an online platform providing free information and resources called MY PCOS I Love You, alongside Dr Stephanie Yang and Deena Marzuki in September 2021.

A strong believer that knowledge is power especially when it comes to women’s health, she sits down with Tatler to give an honest account of how the condition has affected her personal and professional life in the last six years, including her current pregnancy.

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How did PCOS affect your relationship with food?

In the beginning, I was relying on a lot of information online. Trust me when I say I’ve tried all the diets: keto, paleo, FODMAP, cutting out gluten, everything! I realised that diet is different for every woman. For example, I stick to a 80:20 ratio for foods I can and cannot eat, whereas other women have to be really strict to manage their symptoms.

My ethos is to cook at home as much as I can, using wholesome ingredients. When you make it yourself, you know what goes into it and you’ll be surprised to see how nourishing Malaysian food can be. Local vegetables and spices, such as sawi (mustard leaf), kangkung (water spinach), turmeric, ginger, coconut milk and so much more, are good to incorporate in anyone’s diet, not just women with PCOS.

How did PCOS affect your career?

On the surface, it didn’t. I was able to put on a face for the camera and work, work work, but inside, I was struggling. My colleagues and business partners noticed a change in my character and the way I managed my work. I was so stressed, I never spoke to anyone including friends and family and I even stopped cooking at home.

The mental health aspect is something not a lot of people speak about because other symptoms, such as fatigue and weight gain, are more tangible. But I would say it really affected my personal life. My friendships and relationships were affected. At my worst, I was so depressed I couldn’t get out of bed.

Going to see a therapist alongside everything else was really, really helpful in my journey.

See also: How to Open Up About Mental Health to Friends and Family

PCOS is often linked with infertility. Did you worry about that before you got pregnant?

Ugh, people saying this all the time puts so much pressure on the woman! In 2020, the symptoms for my PCOS, thyroid deficiency and endometriosis, were at their peak—and there was a whole pandemic raging in the background. After my surgery to remove endometrial tissue, I focused on healing at home with my husband. It was nice not having to be outside all the time.

I was diligent with my supplements and medication, developed a whole bunch of recipes that worked for me and I started working out. I was recording videos to send to my personal trainer but I discovered I enjoyed making TikToks and sharing them online!

I was putting myself first and not focusing on all the difficulties and challenges of my conditions; in a few months, I was pregnant. That’s the key to well-being, nurturing your emotional, mental and physical health!

See also: How Covid-19 Vaccines Affect Pregnant Women: A Fertility Specialist Debunks The Biggest Myths

Do you think there is a stigma when it comes to talking about women’s health?

It’s a step by step process. Everyone’s doing their bit and changing their community. I’m glad that I am able to use my platform to help other women. That’s one of the reasons why I co-founded MY PCOS I Love You. I was receiving messages from followers asking for advice and I wanted to make sure they had a reliable and trusted guide to connect them with the right doctors, especially if they are young or need financial support.

If you could give one piece of advice to women, what would it be?

Go to the gynaecologist once a year—share what you’re going through, whether it’s severe period cramps or irregular bleeding, and get checked for breast lumps and cervical cancer. Don’t be shy or ashamed to talk openly about your body, whether it’s with your doctor or your family and friends.  

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