"My first year at university felt like the worst time to be living with arthritis"

27 August 2020
Kalifa outside and at home.
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Kalifa was diagnosed with rheumatoid arthritis at 17. Now 20, she is a graduate and advocate for equality, diversity and inclusion. She shares her experiences of living with arthritis as a young person.

No-one mentioned arthritis until I was diagnosed

I was an avid netball player at high school. I started to become unable to land jumps; I had a painful knee and it would collapse inward. I thought this was strange as I hadn’t had any injuries. I went to the doctor who shrugged it off for about two years or more. I was given a misdiagnosis of Baker’s cysts and then a different doctor referred me to a rheumatologist.

I felt like I was the only young person living with arthritis

I vividly remember going to the rheumatology clinic when I was 17 to have tests done. The rheumatologist said, ‘You have a disease, it’s called rheumatoid arthritis.’ I was in total shock and disbelief as I always thought it was an elderly disease.

She was my first rheumatologist and quite insensitive. It made me feel like it was almost the end of everything - she kept emphasizing that it’s a ‘disease’. I thought that my life was pretty much over as my condition wasn’t explained to me. The unknown element of my condition triggered me to live in denial about my diagnosis.

I was thinking ‘they must have got it wrong’

I had absolutely no idea how it would impact my life and I tried to brush it to the side. When I first spoke to my friends about it, a lot of them said it’s ‘an old person’s disease’ and ‘no way do you have that’.

Initial reactions are important as it shaped how I talk about my arthritis now, I’m often apprehensive to tell people I have arthritis. Reactions at the time perpetuated my denial of my disease. I didn’t research anything because I didn’t want to confront it.

You don’t think about having to go to hospital at a young age

I started methotrexate when I was 17 and have recently started a new biologic, my sixth medication since I was diagnosed. Taking my medication was when the reality of having a disease hit me, it was especially bad when I had to inject myself. It was also prolonged as I suffered bad side effects which impact me to this day.

Rheumatologists underestimate the mental toll when you’re taking medication as a young person. Having to go into hospital was another harsh reality. Once I made the mistake of driving to hospital and I was so anxious that I stalled the car five times on the way there!

When you don’t get the ‘normal’ experience it can make you feel isolated

My first year at university felt like the worst time to be living with arthritis. Weeks beforehand I had to think about my medical arrangements as I needed a fridge to keep my biologics in. Fresher’s week was difficult because I was on methotrexate and biologics. The hospital said I need to be careful and I remember being angry about the fact that I couldn’t have the same uni experience as everyone else.

People would ask, ‘Why aren’t you drinking?’ You just get tired of explaining and sometimes you get called boring. Socially it’s hard, but it got easier as my flatmates quickly understood my situation. I haven’t always had such an understanding response. A lot of people belittle the pain I am in or act like it isn’t there.

As a young person I shouldn’t be excluded from events just because I have a disease

There was an instance in my first year when I went out with some friends. When we got to the venue, we were stood up for about an hour and a half. I said to my friends that I had a bad pain in my joints.

I told the event steward about my arthritis; they laughed at me and said I had to sit on the floor. I told them I found it hard to sit on the floor as my knee joints were stiff, in the end me and my friend just left.

Whilst some people just say I shouldn’t go out, I don’t agree. As a young person I shouldn’t be excluded from events just because I have a disease.

Looking after my body completely changed the way I look at exercise

As a teenage girl body image is pervasive but living with a disease which prevents you from exercising makes it much harder. However, the good thing about arthritis is it allows me to look at health and body image in a different way.

I am now a mindful person and I’m grateful for what I do have every day. I have a saying, ‘Would you be happy if this was how you had lived your last day?’ Morbid I know! But it puts things in perspective for me.

It’s not like a broken arm, it can’t just be fixed

When I was first diagnosed my family didn’t have an extensive conversation about my diagnosis which impacted my future relationship with my disease and talking to my family.

It’s only recently that I’ve become more willing to talk to my parents, who now will listen to everything I try to say and respond emotionally rather than trying to fix it. It’s not about trying to fix it practically but being empathetic and just giving me a hug or letting me cry and moan.

It shouldn’t take a physical signifier for people to take you seriously

There needs to be a wider conversation about pain. Physical pain affects young people too. Society expects us to be healthy but that’s not always the norm; because people think it’s the norm, conversation about pain in young people is not always open.

I created my Instagram account (@lifeandarthritis) because I wanted to connect with other young people and know I’m not alone.

By resenting my arthritis, I was resenting me

A year ago, I started to resent my arthritis. By resenting my arthritis, I was resenting me because my own body was attacking itself.

Becoming more open about my relationship with arthritis and pain has helped with my mental health and relationships with my support network. I’m quite a strong person but I’m learning that it’s ok to tell people when you’re in pain.

We’re here whenever you need us.

If you’re feeling isolated from family and friends during these uncertain times, we’re here for you. 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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