This is the story of Mitelia from a Carefree break for an Invisible Army exhibition
Discover more about the full exhibition in our Carers Week 2025 round-up.
“Jay is literally the nicest person in the whole world!” Mitelia says. She and Jay met online eight years ago, over a mutual love for writing. Mitelia was living in San Francisco doing a degree in English and working as a literacy tutor in a school. Jay was in Hull, Yorkshire. Mitelia visited Jay in Hull and Jay visited her in San Francisco. Jay uses they/them pronouns.
Mitelia was finding her job challenging and decided she wanted to spend more time with Jay and support them, as Jay was struggling with their health. “Jay’s health needs weren’t being met through systems available to them,” says Mitelia, “so I quit my job and moved to Hull.” She only planned to stay for six months. It was the early days of Covid. Before her flight, she said goodbye to her family outdoors at a distance, everyone wearing masks. “Only three people were on the plane,” she recalls. “It felt really weird.” When she arrived in the UK, Mitelia quarantined in Jay’s spare room to keep them safe as Jay is immunocompromised. She laughs, “I had no idea initially what I was doing. I’m not sure if I was just young and dumb, but I thought in the UK I could write the next great American novel. Very quickly, I found myself navigating a new world, not just adjusting to life in the UK but by learning the complex medical language and systems of healthcare as I began supporting Jay.
Five years have passed since her six-month plan, and Mitelia and Jay are now married. “It's been difficult,” she says. “But I’m glad I came and I’m glad I can help Jay because they deserve it and I love them.”
To begin with, neither of them knew the cause of Jay’s debilitating symptoms. “I was regularly gaslit by professionals over several years,” explains Jay. “It was only a few years ago that I was finally diagnosed with Multiple Sclerosis (MS) and autism.” Having found a neurologist in London who offered a treatment for MS that was unavailable anywhere else in the country, Jay and Mitelia moved there. Together, they’re building a team to meet Jay’s needs: sleep, gastro, neurologist and other specialists that can support their MS and other conditions. “I receive much better care in London,” Jay wrote in a piece for the MS Society newsletter. “Now when I see NHS professionals, I can get the care I need.
They treat me completely differently from those in my home city - they treat me almost as an equal.” Jay has had a challenging year with their symptoms, which has meant Mitelia has had a challenging year caring for them. Their lives are so entwined. Jay needs to spend most of their time in bed currently to manage their symptoms. “You ready?” Mitelia asks as she prepares to reposition Jay in bed. Then: “All done.”
“Thank you,” Jay responds.
Mitelia supports Jay across their daily routines from nutrition and medical appointments to moments of reassurance and comfort, while also navigating the emotional demands of being a partner and carer. “I feel like a snack would make you feel better, but no pressure,” she says. With Jay’s consent, she makes them something, weighing out each item. Jay does not feel hunger, so the only way they can make sure they’re receiving what they need nutritionally is for Mitelia to keep track. She also adds thickening powder to the drink she’s making, as Jay struggles to swallow. “I love cooking,” says Mitelia. “I make a lot of soups like French onion. That's Jay's favourite.”
They have a bathtub at home. Jay finds it challenging to get in and out of the bath so Mitelia supports them to have sponge baths in bed. “These past four years there have been a lot of sponge baths,” Mitelia says. The couple want to find an accessible home so Jay can still get around inside when they need to use a wheelchair - preferably with a wet room, and a spare room so Mitelia can have space to recharge alone.
“We’re working on it,” she says with a heavy sigh. “I wasn’t prepared for how emotionally taxing being Jay’s carer would be - how much of myself was needed to do that. Or how to navigate being in a relationship and being their carer at the same time. I honestly didn’t notice my mental health starting to struggle.” Mitelia has tried attending carers groups but has never felt that they were quite right for her. At a group for people who care for someone with autism, the others were all parent carers. “At a general carers group, they were a lot older than me,” she shares. “I’ve realised that after five years in the UK, I still haven’t found any of my own connections. I tried therapy but I found it so difficult to explain to someone the complexity of being both a partner and a carer.”
“This may sound silly,” she says, laughing, “but I love talking about bear attack stories. I just like to know that there are things one can do to prevent a bear attack.”
“I listen but they aren’t the stories I enjoy,” says Jay. “I love Paddington Bear.”
“Jay loves me, and I love bear attack stories,” says Mitelia and they both laugh.
Jay always has an emotional support bear beside them, with a voice message recorded by Mitelia which says, “I love you so so much.”
A couple of balloons sit in the corner of the room. “I’d upset Jay, so I bought them gifts as part of an apology`’. Mitelia explains.
“I love balloons and flowers,” Jay smiles, “and I’m so grateful for Mitelia’s support.” Jay was once offered a book contract but couldn’t accept it on health grounds. “Now I have Mitelia’s support,” they say, “I can hopefully try again to get another.”
“I’m actually quite nervous about the one-night break I have coming up,” shares Mitelia. “I don’t know how Jay will manage emotionally. I won't be able to help them regulate.” Jay does not like being away from Mitelia. Most, if not all, of the couple’s time is spent together. Mitelia explains,
“As an introvert I sometimes have to say to Jay that I need 10 minutes on the sofa alone to recharge, but that’s the furthest I’ve been from them in a while.”
But Mitelia does take the break - thanks to Carefree. In the morning she has breakfast with another carer staying in the hotel. They find solace in sharing their stories, and the challenging feelings that come with caring for someone you love. After swapping numbers and sharing a long hug, they assure each other they’re not alone – they now know they’re part of what will hopefully become a Visible Army. “It was so nice to have the occasion and time to put on some make-up this morning,” shares Mitelia. “Although I found it challenging to leave Jay, I know it was important for me to take the break and think about my own needs.”
Catch up with a Carefree break for an Invisible Army exhibition
To read the rest of the stories and discover everything Carefree did during Carers Week 2025, check out our summary below!
(All photo + case study credits: ©Invisible Army)
