Stigma in obesity: The patient’s perspective

Hello, my name is Vicky Mooney. I am the Irish Patient Council representative on the ASO Patient Council panel. I’m here to give you my experience of what it is like as a patient who has suffered with discrimination and stigma all of her life.

So if you see the image before you, that was me at 28 years old. I was 400 pounds in weight, or some may say 180 kilos, or in Ireland we would say 28 stone. So I was 28 stone and I was 28 years old in 2005.

Many people actually wonder how did I get to that point in my life. As a child, were you overweight as a teenager? And I was quite literally overweight all of my life. I comfort ate as a child to deal with the daily life and stress of a difficult childhood.

And as the years went on, my weight gained probably a pound per month. So it’s not an awful lot when you actually think about it. Some people say you can lose a pound in a month.

It’s quite easy. And for some people it is. But as a child, if you’re gaining a pound a month, you’re gaining 12 pound, 14 pound a year.

So every age I was, I was the same in stone. So at 15, I was 15 stone. At 20, I was 20 stone.

The teenage years as an obese girl was quite harrowing. People didn’t see this part. They didn’t look at your eyes.

They didn’t see your smile. They just seen from the waist down and they just seen what other people would say is fat or lazy. The girl they don’t want on the team.

People laugh, they bully, they slag. And it wasn’t just friends you’d have. I suppose teachers would have preferences to the student who seemed more perfect and normal body type.

And I certainly wasn’t that. So the teenage years were pretty harrowing. And unfortunately, the vicious circle of comfort eating was that the more depressed I became myself, the more withdrawn I became, the more I was bullied or slagged off or discriminated against.

The more chocolate I ate or the more food I ate to comfort myself. I didn’t eat five burgers and drink two liters of Coca-Cola, but I comforted myself with food to feel that little bit better. So when we talk of discrimination, stigma for young people, it can be spoken of, but when you have the reality of it, that this is what it had done to me, I think it can be quite tough.

When I think back to the years of my doctor with my mom going to address my weight issue, it was something I never ever wanted to do. The most demoralizing feeling is walking in to your GP who you see as this high professional, godlike figure who knows everything and can fix everything. And realizing that you’re being judged and looked at as if you’re lazy and you should be ashamed of yourself because you’ve eaten too much and you’ve brought this on yourself.

Nobody wants to bring obesity on themselves. So at 28 years old, you see the picture there, I was 400 pounds and very, very depressed in my life. I was married with two young children and life was quite tough.

I didn’t exercise. I loved to swim, absolutely adored to swim, but I was so aware of the stares and the looks I would get going to a pool. I loved to be out with friends.

I loved to go walking. I loved to be in the park. I loved taking my dog for a walk.

I didn’t want to because I was so embarrassed. There’s that shame because as an obese person, we wear our disease, our obesity on our sleeve for everybody to see and everybody to judge. And people judge, they looked and they stared and they nudged friends.

And even the subtle little looks where somebody would look, but they wouldn’t look at your face and they’d look at your tummy. And your awareness is so heightened. Walking into a shopping mall, thinking it’s going to take me about 400 steps to get to the shop where I can buy some clothes where maybe I won’t look as obese.

And all the way there, your awareness of people staring at you, judging you, thinking that you’ve eaten three meals in the last one hour, when in actual fact you haven’t. I thought I had the solution when I was 28 years old and I’d heard of bariatric surgery and I went to my GP and finally verbalized what had been eating me alive quite literally for years, which was that I needed to do something about my weight. I couldn’t manage this by myself.

And he said to me, there is a weight management clinic with a multidisciplinary team and they are there to help you, to guide you, to discuss with you, to help you understand why you are this weight, what is going on with you. So I spent a year and a half with the clinic and after the year and a half, I had bariatric surgery. And within 14 months, I lost 14 stone, which is 200 pounds or 90 kilos.

I lost half my body weight. And I really thought I had been given like just a whole new lease of life, that this was it. This was the solution to my obesity, I thought.

So here I am 11 years later and I’ve regained back 25 kilos in weight or about 65, 70 pounds. And I’m still struggling with obesity. On a daily basis now, I attend a gym every day for an hour, an hour and a half because I’ve had bariatric surgery.

I still eat small meals, small portions, I can’t overeat. And I suffer an awful lot with dumping syndrome, which is when you eat too much sugary food, particularly, and you feel quite literally nauseous and sick. So I cannot overeat and I do overexercise.

I can leg press 200 kilos. I’m quite proud of my physical achievements, but yet I’m still struggling with my obesity on a daily basis. And more so the obesity in correlation with lifestyle.

People assume that it is my lifestyle choice to be like this, when in actual fact, it’s not. When I lost 14 stone in weight, I became a plus size model. And I was the largest plus size model in Ireland for many years.

And although I felt wonderful in myself that I’d achieved this and I’d made it this far and people were telling me I was beautiful instead of telling me you need to do something about that weight, I still found it very, very hard to change my mindset because when you’ve spent 28 years of people not addressing your face or listening to your words, but rather judging you, it’s very, very difficult to change that feeling in your mind that are how you feel in yourself and that perception. There’s oftentimes that people ask me, how can you explain what it is like as a patient, as an obesity patient? And I taught a lot about this. And if you can turn the tables, you will realize that if you were to walk out every day with something that you’re ashamed of, something that you’re embarrassed about.

So if you think of one thing that you’re incredibly embarrassed about in your life, one thing that hangs with you and you’re very ashamed of or you’ve been made feel ashamed of more so. And if you had to write that down and walk around for a whole day with that banner and see everybody looking at you and know that everybody is aware of it, the whole world can see it. That is what it is like for an obese person, for an obese patient.

So how can we change things? I suppose when I look at some of the slides, being a plus size model, the media has glamorized what the perfect body is the perfect woman, even as a plus size model. There’s a slide there I’m showing you. And there’s a beautiful woman in a bathing suit.

And yes, she has fat. She isn’t fat, she has fat, but she is still a very beautiful, fit, healthy plus size model. And yet the image beside it is what the media has done to it.

And when I think of myself as a woman who felt very empowered and accepting of my body after losing so much weight and still struggling and fighting every day, images like this can take away all of that work. They can just knock it under the carpet so easily. People perceive us plus size people or obese people or fat people as lazy, undisciplined, uncaring, disgusting, not motivated.

And too often it comes from family and people that we hold in high regards, teachers, people in the healthcare professional. When you go in for an operation and the doctor comes in and instantly he looks you up and down and you know he’s thinking, okay, well, your weight has something to do with whatever’s going on here and he probably hasn’t seen your chart. And this is something that many patients speak of.

So what can we do to change it? I think education, education to us is the only way. If we can educate our healthcare professionals, medical professionals, our family, our friends through schools, through teaching and we can bring stories like my own to people so they can realize the impact and the damage that stigma and discrimination does. How much you can set a person back.

I’ve come so far and I’m one of the patient council members that speak so openly about my life with obesity and there are an awful lot of people who cannot do that, who cannot verbalize that they are obese, let alone have somebody judge them. It’s like when somebody takes so many steps forward, it only takes one small comment to knock them all the way back and knock the wind out of their sails. So really education is a way to open up people’s minds to the fact that obesity is not my lifestyle choice.

I have a disease that I’m wearing for the world to see. I’m fighting it on a daily basis and it is not my choice. Thank you.