Kezia told as few people as possible about her illness, in the hope that would mean it wasn’t real
A woman who suddenly fell down in her 20s hid the diagnosis from everyone for the next 10 years. The first sign that something was wrong with Kezia Kecibas was the sudden fall.
Kezia said: “I was walking across the room and just collapsed out of nowhere, I hadn’t tripped. I hadn’t fainted. My body just gave way underneath me. I thought maybe I was overtired. I was in my early twenties, was really healthy but I just started falling over nothing. My eyesight started blurring and I was just dropping things.”
The unexplained fall would become the first symptom of Multiple Sclerosis – a condition that Kezia, from Cambridge, went on to hide from nearly everyone for over a decade. “An MRI scan revealed what was going on. As soon as I heard ‘MS’ I thought of a friend’s mum who went from walking into a wheelchair pretty quickly, and then after just a few years died. I couldn’t believe it. I was devastated.” Kezia said.
The mum-of-two, now 44, buried her head in the sand and threw herself into work. “Not telling people was my way of coping. I thought – if I didn’t tell them, the MS didn’t exist. I didn’t tell clients, I didn’t tell most of my friends – I just carried on,” she said. “I was doing injections and managing pain behind closed doors, but I kept up appearances. I had a theatre degree, and I guess I really used it. I got good at pretending I was fine.
“I had a retractable stick that I would hide in a shopping bag in town. If I bumped into someone I knew, I would just lean against the wall. I didn’t want my clients to know – so I would pretend I had cramp or something.”
Diagnosed in May 2007, aged just 25 and with a small child at home, Kezia says her instinct was to keep going no matter what. “I thought I could manage it myself. I’d work, look after my son, and then collapse in a heap afterwards. I didn’t want people to see me as weak.”
But Kezia’s condition worsened and by 2018 she was exhausted, struggled to walk with two sticks and the NHS had said there was nothing more they could do for her. Seeing a future in a wheelchair was inevitable, she tried one last ditch attempt; stem cell therapy in Russia.
But it cost £38,000 and as a single mother, the cash wasn’t available. It wasn’t until a friend bluntly told her she’d need to go public to crowdfund the cash that things began to change. “She said, ‘If you need money, people need to know what you’re going through’. So I started telling people and posting online, and I was blown away – I had donations coming in from all over the world. I was so lucky.”
In 2019, she flew to Moscow for HSCT (haematopoietic stem cell transplantation), a treatment hard to find on the NHS. “It involved chemotherapy and isolation – it was brutal – but it gave me hope. I started to feel my energy coming back. The fatigue dropped off. I could cook again, and my kids even said my food tasted better,” she said.
Since then, Kezia has stayed well, managing her condition carefully, using what’s known as ‘spoon theory’ to ration her energy into measured amounts. “I only have a limited number of spoons a day – so if I go food shopping, I don’t see clients. It’s all about balancing things.”
One unlikely source of relief has been oxygen therapy. “It’s a hyperbaric chamber at the MS Therapy Centre in Leicestershire. You sit with a mask on and breathe pure oxygen,” she explains. “I didn’t think it was doing much until I went away for two weeks and couldn’t access it – I felt like I’d been hit by a bus. The difference was incredible.”
She uses the centre every week, and she says it has been life-changing. Today, Kezia uses a walking stick, a scooter, or a wheelchair depending on the situation – but she doesn’t let the condition stop her. “I used to be very anti-driving, now I drive everywhere. I plan ahead. I still get tired, but I’m living again.”
Kezia now takes on as many adventures as she can to ensure she is making the most of life. “One of my best friends once said, ‘I’m glad you got MS,’ and I thought that was an awful thing to say. But she meant it’s made us do more. We’ve gone parasailing, we’ve slept under the blue whale at the Natural History Museum, we’ve been to paint parties in Magaluf.”
She added: “People think I’m drunk when I can’t walk – but it’s just because I’ve been dancing too hard.” Now, she says, life is too precious to waste. ‘People moan about getting older – but I love birthdays. That’s more time to do fun stuff. People say I’m always on holiday – well, yes, because I love it.
“MS a pain in the bum – but it’s also a blessing. I don’t take anything for granted. I do as much as I can. And I stay positive – because if you keep your head up, the ride is a lot easier.”