Growing up with arthritis: Zahra’s story

13 July 2020
A montage of Zahra and her friends smiling, laughing and stood with the Eiffel Tower in the background.
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Zahra lives in Belfast, she’s 21 and was diagnosed with juvenile idiopathic arthritis when she was eleven, but her symptoms started when she was at primary school.

She tells us about the stigma she faced at school, how she’s managed through university, including finishing her final year in lockdown, and her hopes for the future.

“I don’t remember being told I had arthritis, but I remember the hospital appointments.”

The first time I noticed symptoms, I was really young. I was jumping on the bed with cousins and when I went to cross my legs, it really hurt. I didn’t think anything of it, but then it started happening more and more.

My gran later noticed that my right knee was very swollen, and that I couldn’t get up and down very easily. I used to be very active and then suddenly there were things I couldn’t do anymore.

It was my gran who got me a doctor’s appointment and from there I was diagnosed quite quickly, just as I started high school.

“At school, people mistook my symptoms with laziness.”

I’m missing fingers on my left hand and joints on right hand, which made things harder at school.

I’ve always found it difficult to get my notes done and experienced extreme fatigue at exam time. I’m slower than everyone else because of my condition and the teachers didn’t seem to fully understand. They thought I was being lazy.

My friends have been understanding and really helped me out. They would scan their notes for me and help me pack up at the end of lessons. We all started secondary school at the same time, so we knew each other, and it didn’t matter to them that I had arthritis.

“Managing arthritis alongside everything else can be overwhelming.”

I’ve just finished my final year of uni, majoring in journalism. I’ve loved my course, especially my major project, but as well as volunteering with Versus Arthritis, I work with a few other charities, so there’s always lots on.

I was finding it quite difficult to manage everything on top of my final year work, and last semester really took a toll on me. I started a new medication and it made me feel unwell.

My university is in Coleraine, but I live in Belfast, and would travel to and from the campus each day, which also took a lot out of me. I’d fall asleep on the train because I was so fatigued.

I was considering deferring for a year, but in the end, things improved, and I managed to continue my course as planned. It’s amazing what a difference three months can make.

“When lockdown happened, I think it actually helped me.”

Having more time at home and less time spent travelling to uni, meant I was able to take things easier and achieve things bit by bit. I submitted my dissertation last month and have just found out I’ll be graduating with first class honours, which is so exciting!

I’m sad I haven’t been able to see friends as much as we’d planned to this summer though. We know our graduation will happen at some point, but we were all meant to be going to a concert, which we can’t do now.

I’ve been Facetiming with friends a fair amount. I actually met one of my closest friend’s through Versus Arthritis and we speak to each other a lot, especially now we can’t meet up as much.

And I find time to relax when I can, I’ve watched a lot on Netflix.

“I didn’t know any young people with arthritis before I joined the Young People and Families service.”

I’ve been part of the Northern Ireland branch of Versus Arthritis (previously Arthritis Care) since around 2014. I first came to hear of the young people and families service at one of my doctors’ appointments.

It was scary going along to my first event. I’ve always been shy, but I was trying to find things to challenge myself, so this was a good opportunity and I was so glad I went along afterwards.

“Thinking about the future is daunting, but I know there’s support there if I need it.”

I’d like to do music journalism, but I’m worried Northern Ireland might be too small, and I’ll need to be somewhere bigger like Dublin or London. I don’t know how well I’ll manage with my hands being away from home.

I’m trying to come to terms with being in this stage of life and looking for help and guidance with making decisions on what I’d like to do and how I’ll manage my condition.

The support I’ve received from Versus Arthritis has been was so helpful and speaking to others my age about how they’re feeling, has made all the difference.

I’m now part of the young person’s advisory panel for the charity, and really hope I can help others who are going through some of the challenges I’ve been through.

“My message to other people, would be…”

While lots of people are aware of the physical aspect of arthritis, I don’t think the mental side is talked about enough.

It can be really tough on young people, who are learning to manage their condition alongside the challenges of growing up. I’d like people to understand that and take the time to listen and support if they can. It’s helped me so much.

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