‘I was diagnosed with dermatomyositis at 18…this is a time when we are meant to be having fun’

Being diagnosed with dermatomyositis at just 18 years old has had a profound impact on Lauren’s life.

Now 19 years-old, Lauren said the diagnosis left her feeling “isolated and lonely.”

“I was 17 when I developed an autoimmune disease and was diagnosed at 18,” she told us.

“I think the most difficult thing [about living with an autoimmune disease (AID) as a young person] is it being so unheard of in young people. People never expect a teenager or young adult to become sick,” she explained. 

“So when one does, a lot of people struggle to understand and grasp the severity of it.”

Lauren, who is currently studying at university, also highlighted what a challenge it can be when your pain isn’t always visible.

“A lot of people don’t see the pain we are in, or how debilitating our symptoms can be,” she continued. “So they never seem to understand which really upsets me, because I worry people think I’m lazy, boring or moody!”

Being diagnosed at a young age has meant that Lauren has, at times, felt like she was “missing out.”

“The missing out and lack of energy because everyone else at this age seems so carefree and to be able to do whatever they want, when they want. This always feels unfair.

“Especially at the start, I used to always think why can everyone else do this and not me,” she added.

Describing her early onset symptoms of dermatomyositis, Lauren said things began slowly but “escalated very quickly.”

“In May, 2023, I started to develop a rash all up my arms and hands that was thought to be eczema. However, as I went into the summer I started to drop weight, get headaches and become very fatigued. 

“Towards the end of the summer I got a bit of joint pain in my wrists and ankles. [I] didn’t think much of it at first, but in the space of [a few] weeks I began to feel so much pain and weakness that I could barely stand up or walk. 

“This went on for months with no improvement and I was passed around from specialist to specialist, trying to figure out what was wrong with me. In February 2024, I was diagnosed with a really rare autoimmune disease called dermatomyositis which causes severe pain and weakness through the muscles and the joints, chronic fatigue, rashes and a bunch more symptoms.”

Dealing with her condition on a daily basis can be “different everyday,” Lauren explained. “Some days I’m in a lot of pain, but there are days when I’m not in as much. My symptoms vary from severity daily and in different combinations.”

Managing the flare ups of her condition and how this affects her physically and mentally, she told us: “I found myself being really isolated and feeling lonely because of cancelling plans, not being able to see friends as much (especially for the first year). 

“Sometimes flares and my symptoms will affect me when I'm already out and I feel like I just go silent because I don’t have the energy to communicate anymore. I also struggle a lot with my appearance during flares because I become quite skinny and pale. One of the medications I have to take when a flare is really bad did cause me to lose the majority of my hair. I thought I looked really ugly and scary which is not what you want as a young person!”

Speaking about what advice she would share with other young people going through an autoimmune disease diagnosis, Lauren said: “It’s a very challenging time, especially for the first year or so because it’s new, you don’t know how to handle it and it’s very frustrating, upsetting and overall a scary time! 

“But you will have good days where you feel up to doing things. Not everyone will always understand conditions like ours, but there are people who will and they will understand and stay by you. Overall though, I think my number one piece of advice is to be kind to yourself and not hard on yourself. It’s very easy to feel bad about yourself and frustrated when you can’t do what everyone else can do. [You might] worry a lot about what others think, but your body is going through stuff that a lot of people our age can’t even imagine so it is not your fault and people will understand.

She continued: “Pace yourself and listen to your body, rest if it’s telling you to and I promise you will have good times and you will learn to deal with this much better! It’s difficult, but with time this will all become easier.”

Lauren was speaking to the Wren Project as part of our Wren Voices campaign, an initiative to amplify the voices of people living with rare and other invisible diseases. If you would like to share your story in our Wren Voices campaign? Get in touch here.

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