MS stories

I kept my MS diagnosis secret, until I realised the power of talking about it

Podcaster and campaigner Jessie Ace turned her diagnosis of a chronic illness at 22 into a positive, by supporting and inspiring people around the world. Deborah Johnson reports

It’s not the cards you’re dealt that matters, it’s how you play them that counts.” For Jessie Ace, this is a mantra that inspires her every day. It has helped her overcome her career dreams and confidence being shattered by her multiple sclerosis (MS) diagnosis, and underpins the positivity that now enables her to inspire so many others with chronic illness around the world. Through her DISabled to ENabled podcast, Jessie has built a global following of people who turn to her for inspiration, after turning around her life and outlook since being told she had MS at 22. When the news was delivered, she had just graduated from university, was embarking on a career as an illustrator and had even clinched a book deal. “I suddenly felt I had lost my purpose,” she says. “I had a degree that meant nothing, the business I’d spent two years painstakingly building up was gone, and I couldn’t be an illustrator which was my dream and what I had loved doing since I was a little girl. “At first I woke up one morning paralysed down my left side, completely out of the blue, but then later I lost use of my right hand too. It was the worst time of my life. As a student, I had these ideas that great things were going to happen, but then it was all over.” Then came the bewildering search for answers. “The worst part was not knowing where to turn, or who to turn to. The lack of information about MS in general was really bad, but there was nothing for young people, nothing for a young person to relate to who had just been given this devastating news. I knew nothing about MS and the doctor who gave me my diagnosis just told me to Google it. “There wasn’t even a leaflet, or any advice, recommendations on who to speak to, nothing. As you can imagine, I found every negative story there was through my searches online and it was very scary.” Finding other young people experiencing what she was going through also seemed impossible. “There are local MS support groups out there, but that did not feel like the place for a 22-year-old to be. Everyone else there was much further along in their MS journey, people were in their 50s and some were in wheelchairs, and the outlook immediately became really scary. The idea of what I thought my future would be really freaked me out and I became really depressed about it.” Determined to get on with her life, Jessie took a job

as a glass collector in a local club, then went back to university as a student ambassador, before finding a job as a graphic designer in fashion. But all the while, she kept her MS totally to herself. “I didn’t tell anyone. You would look at me and think there’s nothing wrong with me as I don’t look ill. That is the thing with hidden illnesses like mine. I didn’t want to be pitied, or for people to make judgements, or to say ‘don’t lift that chair’. I just wanted to be me. “I realised that the five people closest to you can shape your outlook and those around me gave me the support I needed. When you have a bad day, to have people close to you telling you that you can do this, you can get through it, tomorrow will be better, is so important. I also came across a book called ‘The Miracle Morning’, which helped me to build a positive mindset. My whole perspective on life began to shift.” Spurred on by her wish to help support young people in her position, and with her new-found positive approach, Jessie began to share her experiences online. “The way I got started building my confidence was by sharing my story on Facebook Live videos about four years after my diagnosis, while working on a wedding business. I’d never told anyone really about my diagnosis, so that was a scary thing for me. “I mentioned on a video one day that I had MS and the response astounded me. Brides-to-be started asking for my advice for how they could navigate their wedding day with an invisible illness, how they could ‘pretty up’ their wheelchair or even how they could disguise their oxygen tank into their wedding dress. “Before I knew it, people began reaching out to tell me about their illnesses. They said they had not shared their stories with anyone before, because they thought people wouldn’t get it. It gave me an opportunity to help others and helped me come to terms with my own illnesses. “That was when I realised that my story was bigger than me and that my experiences could help people.” From there, Jessie’s podcast was born, alongside

a Facebook group inspirationally-titled ENabled Warriors, which helps newly diagnosed people and provides a forum for those who don’t feel like they fit in with traditional groups. Through its uplifting approach, thought-provoking content and often celebrity guests, the DISabled to ENabled podcast has become a hugely popular outlet for people young and old, with a loyal and growing following across the world. “It absolutely makes my day to hear from someone that the podcast has helped them. I have been where many of them are, where they feel it is the end of everything, but sometimes it is just knowing that someone understands, and is there, that can make all the difference. Most podcasts like this are American, and I know a lot of people like that we are in the UK. “Changing the support available for young people with MS is something I feel very strongly about, and we do have a lot of young people who interact with us, but also a lot of older people too. I think for older people they perhaps haven’t had the chance to access something like this, so I know it has been welcomed. I want to help people have the confidence and the voice to share their experiences and their stories in the right way, as I know from my own experience how much this can help.” Jessie, 29, is also teaching people how to make their own podcasts and plans to create a course which helps people to express themselves through writing, social media and the global online community. She is also about to launch a book for people to use

as a diary and planner, to keep a record of relevant information for themselves and medical professionals. “I’ve created this for people to keep track of how they feel, their medication, hydration and the exercise they’ve done and there are daily sheets to complete. This can be really valuable to take to hospital appointments or your healthcare practitioner, instead of having to remember what you did on this specific date, you can have a record of it. It will hopefully lead to more productive appointments and outcomes,” she says. “I have also taken inspiration from the book that helped me so much, The Miracle Morning. You can visualise how you want your day to go and the person you want to be. "There are a series of ‘I am’ statements which can help shape your whole outlook for the day - to keep in mind that ‘I am confident’ or ‘I am full of energy’ can help you adapt mentality and give you a renewed focus, instead of thinking you are tired or today isn’t quite what you’d hoped.” Having established herself as a prominent MS campaigner, Jessie has also become a writer and illustrator - reviving the dream she thought was lost - for many of the world’s biggest MS charities including the National MS Society, MS Society UK, Shift.MS and MS-UK. She has also illustrated for Momentum magazine, MS Matters and New Pathways. From the dark days of her diagnosis, for Jessie, the future is full of positivity. “When I was first diagnosed, I didn’t cope. I believed my life was gone. But now, it does feel great to be able to share my experiences with people who are just as scared as I was, and show them there is a way through, you can do this. “Anyone who knows me will tell you I love quotes, and one that really resonates is ‘It’s not the cards you’re dealt that matters, it’s how you play them that counts.’ I think that’s really important. “Having MS is not the end of anything, although it may seem it, and you are still capable of doing absolutely anything in life. Sometimes you just have to be a little more creative to learn how to do it. Once you get past that, don’t take ‘no’ for an answer. Never let anything stop you from what you want to do.”

Listen to Jessie’s podcasts at https://mmini.me/dtepodcast. Her book and planner will also be available via the website https://mmini.me/blog following its launch in April.