“I really struggled to accept it to begin with.”

Bobbie Nickless is one of our fantastic young volunteers. She was diagnosed with rheumatoid arthritis when she was 20 and was on a scholarship at a musical theatre school in London when her symptoms first started.

She talks us through her journey from diagnosis, to hiding her condition, to finally accepting she needed to take a step back and look after herself.

“I went from dancing, to limping, to a hospital bed”

I was a year and a half into my degree course at Urdang Academy and doing over 30 hours a week of dance classes. I woke up one morning with a swollen knee and thought it must have been a dance injury.

It started as a niggle and I thought it would go, so I left it for about three weeks. But it got progressively worse and worse.

Soon after, it was half term and I went home with two friends to stay with my family in Staffordshire. I lost my range of movement completely; I couldn’t even sit in a crouching position. I really struggled to accept the pain, so we didn’t discuss it. I just wanted to get back to dancing.

Back in London I had to sit out of dance classes and even then, it was still hurting. That’s when I realised something wasn’t right, and I made the decision to go to the doctors. My friend came with me and we thought we’d be in and out, that they’d give me some crutches and say I was fine. But I ended up on an ECG until the early hours of the morning.

“They didn’t know what was wrong with me at first”

Because I was between the ages where you usually develop juvenile arthritis, or rheumatoid arthritis, they didn’t suspect it was arthritis at first. They thought I had a tropical disease; I was really ill.

People don’t realise arthritis can make you feel physically sick, and emotionally unwell. I hadn’t shown any joint symptoms until now, but when I look back, I think I had been experiencing fatigue for a while without realising.

They let me go home from the hospital that evening but asked me to come back first thing in the morning. My heart rate was sky high because I was so anxious.

My mum came down to London so she could take me to hospital. This is when the whole process began – they started draining fluids from my knees and I had so many tests, scans and MRIs but they still thought it was a dancing injury. I finally got referred to a rheumatologist, had more blood tests and was eventually told I had arthritis.

“Adapting to life with arthritis wasn’t easy”

I was only halfway through my degree when I was diagnosed. My class were like a little family, so everyone knew what was going on and they were all very supportive. Lots of people, including me, didn’t really know what arthritis was, we thought it was something your nan gets.

I wasn’t going to be able to continue my course as I had been before, but my principle was incredibly supportive and moved me on to the diploma course for one term so I could still get my degree.

I hated missing out on things, but I did end up having to miss my second-year show term and that was devastating. Arthritis had completely turned my world upside down.

Despite everything, I finished the full three years and graduated with a First. I couldn’t believe it. On results day, I rang my tutor and said there must have been a mistake. It was an amazing feeling.

“My way of coping with the pain, was to ignore it as much as possible”

After graduating I worked in Qatar in the Middle East for a role in a panto.

I was massively in denial at this point. To everyone else it looked like I was doing well, but I felt like I was being fake. I was going for auditions and wouldn’t tell anyone I was in pain. I would always go for singing and acting roles, rather than dancing. I tried to focus on the things I could do rather than what I couldn’t.

After that I moved to Spain for six months to do some production shows and got a job as a resident singer in a hotel. I took methotrexate out with me for self-injections, but they didn’t work well and made me feel sick for days after.

I became very close with my cast and we got through the more difficult times together. I’ve always had amazing people supporting me along the way, which I feel very grateful for.

“It took reaching a real low point to realise I needed to look after myself”

When I came back to London at the end of 2017, my arthritis was the worst it’s ever been. I couldn’t get out of bed in the morning for about 45 minutes, my knees and ankles were so swollen and I couldn’t go up and down stairs or walk – there were fingerprints on the hallway from where I’d dragged myself along.

In February, I finally decided to take a year out from performing and work on getting my health back on track. I moved home, saw my rheumatologist and started having infusions, which really improved my condition.

I moved back in with my family to take some time to rest, I worked locally to support myself and focus on my health.

Things improved massively and I moved back to London in November 2019 and started a job at an amazing theatre creative company, where I direct and choreograph.

Taking that time away from performing really changed things for me. I’ve accepted my condition and feel back in control of my life.

During that year out my physio also put me in touch with the Young People and Families service at Versus Arthritis and I joined my first event last summer. It was amazing to meet other young people who understood what I’d been through.

Being a volunteer with the charity is amazing. You meet so many people that you wouldn’t have met otherwise. You don’t realise how badly you need other people with arthritis until you meet others.

We’re here whenever you need us.

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