Hey Nadia, thank you for speaking to us about your invisible illness today. Please tell us about your illness and how it impacts your day-to-day life.

I am currently being diagnosed with endometriosis. Day to day, it differs. I've had pain for the last two years in different parts of my body, like my pelvis and my back, and I experience a lot of heavy bleeding, especially when I'm ovulating. I'm currently in the midst of a diagnosis, and it's taken two years so far to get to this point.

Invisible illnesses can be very difficult to diagnose because they are sometimes asymptomatic and not immediately recognisable due to their very nature of being invisible. What did your diagnosis journey look like?

My diagnosis journey probably started when I was in my teens.

I was trying to get help with heavy periods, and it wasn't taken that seriously. For the last two years, I’ve had a lot of pelvic pain to the point where I couldn't stand up. And then the blood loss meant I was very severely anaemic to the point where I have to have injections at the hospital now. I was having a lot of dizziness, and I couldn't stay in a straight line. I couldn't walk properly. It's been very difficult to be believed at first and taken seriously until they actually got blood results and could see how it was physically taking its toll on my body.

As a model, your work can mean extensive travel and long days. How does your invisible illness impact your work, and how do you look after yourself when it does?

The illness is definitely affecting my working life. I used to work ten-hour shifts on my feet and to the point where I just dropped down one day at work and I couldn't go on any longer. When I went to the doctors, they signed me off immediately.

So it's taken a good year and a half to get back into a working environment. And that caused me a lot of anxiety because you feel really difficult. You have to put your body first and ask people, can I do this time? Or can I only do a limited amount? It makes you feel like a bit of a burden.

I'm slowly getting used to using my voice and just prioritising myself, and that's how I look after myself by knowing my limits. My physical limits. But it’s definitely tough…because, especially when you're doing jobs where you're working with other people and in teams, you don't want to let anybody down. Especially when it's something that's very face value, you know, you have to look okay, and your energy has to be okay. It can sometimes be hard to hide pain.

Can you tell us how this illness manifests and how you manage your symptoms?

So, with endometriosis, the problem is inflammation. It manifests in cells in your body, and they're basically not where they’re meant to be. My pain goes deeply into my pelvis and into my back. I manage my condition with medication, but there's no cure for it. So it's hormones, and then I take two types of acid. One to control bleeding and one to control pain- that's how I manage it in the hospital realm. How I manage it myself is I do a lot of yin yoga, and I do a lot of acupuncture to keep my immune system up because it affects your immune system and your organs. So you have to be very healthy because you can get triggers. Caffeine can be a trigger, and stress can be a trigger. I have to know my limits. We have this thing called boom and bust, which is where they say to do less on a bad day and more on a good day, just so you're not overexerting yourself and then have to lie in bed for the next week. But also, you know, you want to be able to get out of bed, so you try to push yourself, and it's hard to manage your limits and to always be in pain. I'm always in pain. It's just normal to me.

Sometimes, people think the pain must be the most challenging part, but it often isn’t. What’s the biggest challenge you’re facing with your condition?

I think because it's invisible, people think that you’re okay, and that's challenging when you have this sort of condition. You don't want to be defined by it. you don't want your life to be ruled by it, although it's a massive part of my life now. I think the most challenging part has been accepting that this is now a part of my life and something that I have to manage. Therapy has helped with that. Just learning to accept this part of myself.

After inconclusive consultations and months of frustration, you asked your consultant why it was taking so long to diagnose, to which they responded that there’s not enough research into reproductive health. This must have deepened your frustration, can you tell us more about that?

It's taken me two years to get to this point, and they still can't give me a definitive diagnosis. I think one in ten women have endometriosis, and the symptoms are different for every single woman. So, it's a very hard condition to diagnose.

And that's the frustrating part, that it takes that long to be recognised, and then the only answer is hormones. I think I left that appointment feeling quite hopeless like this is something I have to manage forever. But things change, and there's no definitive answer. And I think that although initially I felt really hopeless, it can improve.

I have to take care of myself and live life the way my body needs. I have to rest a lot, which mentally I find challenging, but physically I need. It's definitely made my life a lot slower and more intentional. So, I'm trying to think of that as a positive thing.

In what ways can the people around you support you?

It's really difficult. I think it works on both sides. Sometimes, I get frustrated that people think I'm okay when I'm working really hard just to seem okay. But also you have to understand that everybody is going through something. So I think you have to give grace to yourself and everybody around you.

And I think that believing in people, listening to people, and letting them express themselves is the best thing, you know? Just to feel like you can be yourself however you've woken up that day and not have to pretend.

You have such a calm, optimistic and upbeat disposition. How do you stay positive despite your ongoing challenges?

First and foremost, I think I have perspective. I'm in and out of the hospital a lot, and there are a lot of unwell people around me who are suffering. I'm so lucky that on a good day, I have the ability to be here and to mix with other people.

I think that that helps give me perspective, and I think with anything in life, you have to face what you have and face your situation and your circumstances, and you have to do what you can with what you've got. So if I feel really limited that day, then I'm just going to do the one thing I can do.

And also speaking to friends as well. I'm so lucky that I can, you know, send a very teary voice note and get support back. Mine are like podcasts, honestly, I don't know how I have any friends left.

What does the future look like living with Endometriosis for you?

I think my hope for my future with this illness is that I can get it under control. The thing I find most challenging is the unpredictability of it. I don't know how I'm going to wake up, especially if I have something to do. That's when the pressure's on.

The first few days leading up to something, I'll feel anxious about it. So I hope that I can have a balance with the condition and learn what triggers it and what sets it off. I hope there is more research done into women's health, especially reproductive health, that people are listened to and that there are more sympathetic ears. It really depends on the consultants that you get; some are really amazing and really listen and understand, and others can be quite dismissive. So I hope everybody can be listened to in the future.