“Having an invisible condition can make things that bit harder”

17 September 2020
Suruthi posing the camera, in her graduation gown and in a shop.
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Suruthi is 21, lives in Kent and was diagnosed with juvenile idiopathic arthritis (JIA) when she was three. She went into remission during her early teens, but just as she was about to start university her arthritis came back.

Here Suruthi shares some of the challenging situations she’s faced with friends, family and peers, the stigma she’s experienced with her condition, and how she’s learning to manage it today by surrounding herself with people who understand and make her feel good about herself.

"I didn’t feel the full impact of arthritis until I came out of remission"

I was diagnosed with juvenile idiopathic arthritis when I was three, but I don’t really remember it. Another condition in my hip used to take the limelight, as I had to have lots of surgery for that.

When I was about ten or eleven, I went into remission and had a period of taking no medication, but I started getting sore joints again I was 17. I was told that my arthritis had come back, and that’s when I started to fully understand the impact.

A month before starting university in Bath I was put on methotrexate. It was the day after results day. I felt scared as I’d heard about the side effects and knew they could be really bad.

"Starting university is hard enough, without managing a new condition"

I got ill so easily in my first year. During freshers’ week I got the flu that everyone gets but it ended up turning into pneumonia. After that, I think I went into hospital every year of university without fail.

I was studying chemistry and was constantly worried about getting arthritis in my hands and not being able to do labs. I often felt like I was in a race against arthritis to finish my degree.

I had a bad experience with some of my peers too. People didn’t understand the fluctuation in my condition at all, some days I’d be ok and some days I’d be stuck in bed because the pain was so bad, and this caused divisions in my second-year house.

I often struggle with stairs in the morning, so when it came to deciding on rooms in the house, I really wanted to be upstairs where the bathroom was, but the other girls I lived with didn’t think that was fair, they couldn’t see why I needed it more than them.

In the end, I stuck with friends who took the time to understood and who cared. They would come over and see me, cook with me, collect notes and lecture materials for me if I wasn’t able to attend. It’s so important to have people who are able to support you through difficult times.

It was my first time dealing with people who weren’t willing to understand what I was going through, and it was so hard. They saw my diagnosis as an excuse for not doing certain things, or as laziness, and that’s a really tough thing to deal with.

"Managing my condition at home has been challenging too"

Having an invisible condition in the Asian community has been an additional challenge for me and is something I really want to highlight for other young people who might be going through similar experiences – you’re not alone.

My mum, dad and brother have always been aware of it, and helped lots when I was younger, but I still don’t think they truly understand it.

My wider family don’t even know I have arthritis. They knew I couldn’t walk at a young age, but not why this was. My mum is against me talking about it, it’s not widely accepted in the community.

My dad has been the trickiest one – never seeing how hard it’s been for me. But everything changed recently when he was diagnosed himself. I think he finally realises what I’ve been going through.

"You never know what to expect when you tell people you have arthritis"

I get mixed reactions when I tell people that I have arthritis, some say ‘that’s for old people, you’re too young’, other people are shocked and say they’d never have known if I hadn’t told them.

Requesting seats on public transport can be really frustrating, sometimes I have the energy to argue and sometimes I don’t. I often ask for a seat and I can see eyes roll, or people are reluctant to give them up. I once heard somebody say, ‘I swear she’s faking it’.

I got a badge last year, which is a great idea, but people still need to be more understanding of hidden conditions.

Thinking about the future

I’ve just finished uni, which wasn’t quite as expected due to lockdown, but I’ve graduated with a Master’s in Chemistry, so the next step for me is finding a job.

I’m on a biologic treatment now, as well as methotrexate and I would say my condition is the best it’s been, but I still worry about the future. I worry about telling employers that I have arthritis, in case they’d rather choose somebody healthy over me.

Until joining the young person’s advisory panel at Versus Arthritis, I hadn’t met anyone else my age with arthritis. It’s been an amazing for building my confidence and learning more about the condition and different people’s experiences. I wish I’d had somebody older to talk to and show me that things are possible with arthritis.

Today it’s a mixture of me not being ashamed of my arthritis and managing it better. I was made to feel ashamed about it before, nobody should have to feel this way.

Suruthi’s top tips

  1. Find a supportive network – try and surround yourself with people who are willing to learn and who take the time to understand. Join up with charity’s like Versus Arthritis where you can meet other people your age who you can share experiences with.
  2. Seek out support at university – when I first started university, I sought out Disabled Students Allowance (DSA) – we discussed my arthritis and ensured I had things like extra time and support during exams, which helped massively.
  3. Honesty is key – it can feel daunting opening up about your condition, especially if you’ve come up against people who don’t get it in the past. Recently, I’ve learnt that being open is the key to finding places and people where you feel comfortable and supported.

 

We’re here whenever you need us.

Read advice and information for young people who have arthritis and their families, including how to ease your symptoms and tell friends about your condition.

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