Lina Nielsen exclusive: 'I have multiple sclerosis – but I still want to rule the athletics track'

Lina Nielsen exclusive: 'I have multiple sclerosis – but I still want to rule the athletics track' - ANDREW FOX/TELEGRAPH
Lina Nielsen exclusive: 'I have multiple sclerosis – but I still want to rule the athletics track' - ANDREW FOX/TELEGRAPH

Before Lina Nielsen sits down to reveal a secret she has kept for her entire athletics career, she has an important rule: this is no sob story.

Yes, there have been plenty of tears along the way – and she will shed a few more during the course of our conversation when recounting the disaster that struck at last month’s World Championships – but she is determined not to be downbeat. What has happened does not and will not define her; she does not want people’s sorrow.

Nielsen has multiple sclerosis. It has been present for exactly half her life and the whole of her running career, ever since she first experienced symptoms aged 13.

More often than not, it lies dormant aside from the type of occasional flare-up that hit her the morning before the biggest race of her life last month, sabotaging her dreams of a world medal.

But even when not rearing its head, it is always there; the last thing she thinks of at night and the first in the morning while quickly running through her daily checks. Is her vision clear? Do her fingers respond the way she wants? Can she feel every part of her body without numbness?

Three yeses mean she can continue on her quest to become one of the world’s best 400 metres hurdlers. A no means it has struck again, seizing control while she sleeps.

Despite us meeting after one of the toughest periods of her life, Nielsen, 26, remains relentlessly cheery. For so long, she did not know if this moment would ever come, uncertain whether to reveal her most private secret that almost no one outside of her inner circle is aware of.

Ahead of her Commonwealth Games debut, and a fortnight after a very public World Championships disappointment, she has decided to open up.

“I never wanted to be known as the athlete who got MS,” she said. “But it’s something that I hope will inspire people. Now is the right time. I want to tell my story.”

She laughs - for the first, but certainly not the last, time during our conversation - and gives a warning that this might take a while. There is a lot she has kept within.

Nielsen, one of British athletics’ most famous twins alongside her identical sister Laviai, was 13 when the disease first struck in the form of sudden weakness in her left arm.

It was initially misdiagnosed as a stroke - a common mistake in young people with MS - and her youthful ignorance meant she soon forgot about it entirely until two more serious flare-ups when she was 17.

The first resulted in double-vision, and the second struck her entire body. What began as an inability to control her fingers, spread steadily until she fell flat on her face while warming up for a race. A few days later she was unable to walk and spent a week in hospital undergoing tests to ascertain the cause. She was diagnosed with relapsing remitting MS a month before her 18th birthday.

“I just remember bursting into tears in front of the doctor,” she said. “I felt like I’d been given a life sentence. He said it was chronic, incurable and I’d have it for the rest of my life.

“I told him about my running and I remember him saying: ‘You might need to think about changing your lifestyle’. He said they didn’t know how bad or good it would get. I cried for the rest of the day. I’ve never cried so hard in my life.”

Unsurprisingly, it took a major mental toll, reducing a bubbly character to a frightened young woman.

“I changed very quickly and lost all enjoyment in life,” she said. “I just sat down and focused on what was ahead of me.

“The nurse said I was probably going through depression, but I never got officially diagnosed because I couldn’t face being diagnosed with anything else. I had panic attacks when I woke up. It was always there. I was just a scared 18-year-old.”

Shockingly, she did not even tell Laviai for two months. “Because she was an identical twin, there was a high chance she had it as well,” she said. “I remember thinking that was my fault. I had that guilt with me.”

Lina Nielsen (right) and her twin sister Laviai - GETTY IMAGES
Lina Nielsen (right) and her twin sister Laviai - GETTY IMAGES

Only last year, after experiencing an adverse reaction to the Covid vaccine, did Laviai go for tests where she was also given a very early diagnosis of MS. Although yet to display any symptoms, Nielsen says “they are 90 per cent sure [Laviai] has it”.

Having such a high-performing twin made life doubly difficult for Nielsen to cope with her condition. When Laviai won a world junior 4x400m medal in 2014, her sister was not healthy enough to try to qualify for the British team. It was the same in 2017 when Laviai won world 4x400m silver.

Yet after a couple of flare-ups that year, all went quiet. Five years went by without symptoms and Nielsen, now a qualified yoga teacher, had started to forget that she even had the condition until the day before she was due to make her World Championships debut last month. Still so raw, it is only when recalling events in Oregon that her eyes moisten and she is forced to compose herself.

“I was in the best shape of my life,” she said. “I felt 7ft tall when I ran. Hurdles felt like they were on the ground. The timing couldn’t have been any worse.

“The day before my race I woke up, put my shirt on and as my fingers stroked my torso I noticed the left side was numb. I remember thinking: ‘Oh f---’.

“By the time of the race, the numbness had progressed to my left arm and most of my left leg, so 90 per cent of my left side was numb. I also started to feel right-sided weakness.

“It was the most important race of my life. I couldn’t not run, so I tried to put it to the back of my mind.”

In the circumstances, it is remarkable that she managed to complete the race, finishing last and running almost three seconds slower than the personal best she had set the month before. “I went out and tried my best, and I think I’ll always be proud of that,” she said.

Lina Nielsen (left) did not progress from her 400m hurdles heat in Oregon - PA
Lina Nielsen (left) did not progress from her 400m hurdles heat in Oregon - PA

What hurt most was sitting at home in London a few days later and watching the British 4x400m team win bronze in her absence: “I was robbed of that relay medal, which will stay with me for a long time.”

Her MS is one reason why she is the sole remaining British athlete still working with Rana Reider, the American coach under investigation for multiple sexual misconduct allegations. Nielsen’s twin sister left Reider’s group early this year and Adam Gemili this week confirmed he had done likewise.

Nielsen suggests Reider’s understanding of her condition has been paramount to her recent improvement and decision to remain with him.

“He believed in me, even when I told him about my diagnosis. Because of that I believed in myself,” she said. “I’ve had jobs in the past where you might not always like the environment or boss, but I had a goal and it felt like the only place I could achieve that was to stay there.”

Asked whether she feels morally happy to stay, she considers before replying: “I wouldn’t say happy. It’s a really tough decision. I’m just doing the best thing I can to be the best athlete I am.”

'I'm not taking myself out of medal contention'

She says she will reassess whether to stay with Reider, who denies the allegations, at the end of the season.

Before then, she has a home Commonwealth Games to tackle. Aided by a course of anti-inflammatory corticosteroids - the first medication she has ever taken for her MS - her symptoms have almost entirely subsided and she returned to the track for the first time last Friday.

“The relapse is already in the back of my mind,” she said. “The three Jamaicans aren’t unbeatable so I’m not taking myself out of medal contention.

“No race will ever be as scary as that World Champs race. I was so scared on that start line thinking I might fall over. Now, when I think about lining up, it’s not scary. It has built me up to be a warrior.”

Medical advances since her initial diagnosis mean she will start regular treatment for her MS after the summer. The risk that it might worsen will always remain, but she hopes to manage things as best she can.

Back when she was lying alone in her hospital bed, unable to tie her own hair or cut up food, Nielsen’s mind would spiral with dark thoughts. “I remember thinking: ‘What if I can’t be a normal teenager? What if my whole life changes?’”

Almost a decade later, she will stand on the Commonwealth Games startline on Thursday as the fifth-fastest athlete in the field and a proud woman with MS. She never was destined to be normal.