“I have multiple sclerosis – but I still want to master athletics”

“I have multiple sclerosis – but I still want to master athletics”

Lina Nielsen exclusively:

Lina Nielsen exclusively: “I have multiple sclerosis – but I still want to master athletics” – ANDREW FOX/TELEGRAPH

Before Lina Nielsen sits down to reveal a secret she’s been keeping throughout her athletics career, she has one important rule: This isn’t a sob story.

Yes, there were plenty of tears along the way – and she’ll shed a few more as we chat as she recounts the disaster that struck at last month’s Worlds – but she’s determined not to be down. What happened does not and will not define them; she does not want the suffering of the people.

Nielsen has multiple sclerosis. It has been present for exactly half of her life and her entire running career since she first had symptoms at the age of 13.

It’s mostly dormant save for the occasional flare up that hit her the morning before the biggest race of her life last month and sabotaged her dreams of a world medal.

But even when he’s not raising his head, he’s always there; the last thing on her mind at night and first thing in the morning as she quickly runs through her daily checks. Is your vision clear? Are her fingers responding the way she wants them to? Is any part of her body numb?

Three yeses means she can continue on her way to becoming one of the world’s top 400m hurdlers. A no means it has struck again and taken control while she sleeps.

Though we meet again after one of the most difficult times of her life, Nielsen, 26, remains relentlessly cheerful. For so long she didn’t know if that moment would ever come, unsure if she should reveal her most private secret that almost no one outside of her closest circle knows.

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

“I never wanted to be known as the athlete who has 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 warns that this might take a while. She has kept a lot in herself.

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

It was initially misdiagnosed as a stroke – a common mistake made by young people with MS – and her youthful ignorance soon led her to forget it completely until she had two more severe flare-ups when she was 17.

The first caused double vision and the second hit her whole body. What started as an inability to control her fingers steadily spread to the point where she fell flat on her face while warming up for a race. A few days later, she could not walk and spent a week in the hospital to investigate the cause. A month before her 18th birthday she was diagnosed with relapsing remitting MS.

“I just remember breaking down in tears in front of the doctor,” she said. “I felt like I was sentenced to life imprisonment. He said it was chronic, incurable and I would have it for the rest of my life.

“I told him about my running and I remember him saying, ‘You might want to think about making a lifestyle change.’ He said they didn’t know how bad or good it was going to be. I cried the rest of the day. I’ve never cried so much in my life.”

Not surprisingly, it took a huge mental toll, reducing a bubbly character to a frightened young woman.

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

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

Shockingly, she didn’t even tell Laviai for two months. “Since she was an identical twin, there was a high possibility she had it, too,” she said. “I remember thinking it 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

Just last year, after Laviai had an adverse reaction to the Covid vaccine, she went for tests, which also saw her receive a very early diagnosis of MS. Although they’re not showing any symptoms yet, says Nielsen, “they’re 90 percent sure [Laviai] has it”.

Having such a powerful twin made it doubly difficult for Nielsen to cope with her condition. When Laviai won a junior world medal in the 4 x 400m 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 the world silver medal in the 4 x 400m.

However, after a few flare-ups this year, things went quiet. Five years passed without symptoms and Nielsen, now a qualified yoga teacher, had begun to forget she even had the condition by the day before her World Championships debut last month. Still so raw, just remembering events in Oregon makes her eyes water and she’s forced to calm down.

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

“The day before my race I woke up, put on my shirt and as my fingers were stroking my torso I realized the left side was numb. I remember thinking, ‘Oh f—‘.

“By the time of the race, the numbness had spread to my left arm and most of my left leg, leaving 90 percent numb on my left side. I also started to feel right sided weakness.

“It was the most important race of my life. I couldn’t run away, so I tried to block it out.”

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

Lina Nielsen (left) was stuck from her 400 meter hurdles in Oregon, PA

Lina Nielsen (left) was stuck from her 400 meter hurdles in Oregon, PA

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

Her MS is one of the reasons why she is the only remaining British athlete still working with Rana Reider, the American trainer who is under investigation on multiple allegations of sexual misconduct. Nielsen’s twin sister left Reider’s group earlier this year and Adam Gemili confirmed this week that he had done the same.

Nielsen suggests that Reider’s understanding of her condition was paramount to her recent improvement and decision to stay with him.

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

When asked if she feels morally lucky to stay, she pauses before responding: “I wouldn’t say happy. It’s a really tough decision. I’m just doing my best to be the best athlete that I am.”

“I’m not taking myself out of the medal fight”

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

Before that she has to tackle a home game of the Commonwealth Games. Aided by a regimen of anti-inflammatory corticosteroids – the first medication she has ever taken for her MS – her symptoms have almost completely resolved 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 the medal fight.

“No race will ever be as scary as this World Championship race. I was so scared at the start line and thought I might fall over. Now when I think about queuing, it’s not scary. It made me a warrior.”

Medical advances since her initial diagnosis mean she will start regular treatment for her MS after the summer. The risk of it getting worse will always remain, but she’s hoping to sort things out as best she can.

Back when she was alone in her hospital bed, unable to tie her own hair or cut food, Nielsen’s mind swirled 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 starting line of Thursday’s Commonwealth Games as the fifth fastest athlete in the field and a proud woman with MS. She was never meant to be normal.

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