Stephen told us, “I don’t know the exact time my eating disorder started but definitely from being very young. I would dislike sitting down for meals and eating around others. It made me very uncomfortable. I know children can be very fussy with food when growing up, but I never grew out of it. It progressed and got worse the older I got. I didn’t realise how much of an issue it was until I met my wife. I thought it was just part of me. Emma could see the signs and she asked me about it.”

Emma explained, “It was certainly evident that Stephen had an eating disorder when we met. I noticed pretty instantly, but I think that was due to my previous knowledge of eating disorders due to the work I had done.”

In 2013, Stephen reached breaking point and knew he had to get help. His eating disorder was beginning to affect his physical and mental health. He also has muscular dystrophy, so for him, it was easy to forget about the issues with eating and focus on muscular dystrophy. But that meant his eating disorder got bad without him really knowing. Emma supported Stephen to go to the doctors about it, but as his BMI was only borderline underweight, he was told he didn’t have an issue. He said, “This was really disheartening as it took a lot of courage to open up about it. I think because my wife noticed the issue before I did, it was easier to come forward because I didn’t have to actually say the words ‘I have an eating disorder.’ After the doctor dismissed the issues I was having, I really struggled to ask for help again. Emma was really trying to persuade me to ask for help again from a different doctor, but I just couldn’t do it, so Emma did it for me. If she hadn’t done this, I don’t think I would have asked for help to this day! The second doctor I spoke to was shocked that I was dismissed based on my BMI. He helped me get the support I needed.”

10 years on, Stephen is learning to live with his eating disorder. He said, “I have good days and bad days. Now that I’m aware of the eating disorder, I have been able to learn how to manage the challenges that I face. It has been a long journey and my journey isn’t over. Now I am more aware of it, I know what my triggers are and what makes them worse. This means if I avoid these situations, then I can manage it to the best of my ability. There are times when I can’t control these situations, like being in public, but the skills I have learned over the years allow me to be able to deal with the issues. If I’m struggling, then I try to remove myself from these situations. My friends and colleagues are aware of my issues and how it affects me.”

Not only has it been hard for Stephen, but it has been equally as difficult for Emma. She told us, “I’m not going to lie, it’s been tough at times and there have been times where I’ve thought some of his behaviours around food have started to affect me. When you’re surrounded by the same behaviour all of the time, it’s just natural to pick these up yourself. For example, we have to make sure that if we’re eating, there has to be background noise as noisy eating is one of his triggers. I noticed that even if I was on my own, I would have to do this. I am heartbroken that Stephen has to go through this each and every day. He’s always smiling in public and at work, but it’s only really me that sees the real effect it has on him. I wish I could take it away from him, even for just one day. But as he says to me, it is a part of him. The challenges we have faced have made us stronger and have helped us both grow.”

Now Stephen and Emma have learned to live with this eating disorder and have made changes to make it easier for them both. Emma explained, “There are a lot of things that I’ve learned over the years. There have been some difficult times but rewarding times as well. I would say the biggest thing would be is preparing him for what meals he is having. I tell him in advance so that subconsciously he knows what is coming. Other things include not overfilling his plate, so it doesn’t look overwhelming. I make sure to do as much of the cooking as possible, otherwise he just won’t eat. Saying that, I try to get him involved as much as possible. I think that’s what has helped over the years, is supporting him to get a better relationship with food. Even if it’s just grating cheese or serving the meal on the plates. These things may seem small to some, but these little tasks have meant he has come a long way over the years!”

Now that Stephen understands his eating disorder and has learned ways of coping, he thinks it’s vital to raise awareness of eating disorders to help others that may be struggling. He said, “Not all eating disorders are the same. Someone doesn’t have to be skin and bones to be classed as having an eating disorder. You will always see in the media and social media about the extreme cases, but that doesn’t mean if you have certain eating disorder traits your issues are any less important. Always reach out, even if you don’t think you’re ‘that bad’ or if someone tells you ‘you can’t have an eating disorder, you’re not underweight’. Talk to your family or friends. Don’t suffer in silence. If you ever get dismissed or not taken seriously, don’t give up. There is help out there. You’re not alone!”

Through supporting Stephen, Emma also recognises the importance of raising awareness and has a few words of advice for those who may also be supporting someone with an eating disorder. She said, “Remember, it’s not their fault. Sometimes it can be frustrating when you’ve not been through it yourself or you can’t understand it. It might feel easier to say ‘just eat normally’ or ‘just stop being fussy’. They don’t choose to have this. It’s not a decision they make to one day start having food issues. Be honest with them. Tell them your concerns, don’t just ignore it and hope it’ll disappear. Get them some help. They may struggle to say the words “I have an eating disorder” so say it for them. It may be the first step they need to getting help!”