I’m 21 and I’ve got arthritis it’s not just an old person’s disease
A UNIVERSITY student who was diagnosed with a rare form of arthritis has spoken about her ‘agony’ and how misconceptions can prevent young people deal with the condition.
Kalifa Cuben, 21, from Hebden Bridge, has seronegative rheumatoid arthritis, an auto-immune disease which affects her joints and causes her immense pain.
She said: “The best way I can describe the pain in my knee is like there’s a golf ball lodged in my knee, so when you’re walking, you have this structure in the way.
“It can also change to like someone stabbing your knee, or a long dull ache.”
Aside from the physical pain, she said, is the mental toll the condition causes.
She said: “You know that you want to be outside doing things and being active, but you can’t, and you feel that your body is restricting you.
“I remember at certain points being frustrated because it felt like I’d get really angry with my arthritis for holding me back.”
Kalifa received the ‘traumatic’ diagnosis when she was 17, first noticing the pain when playing netball and her knee would ‘fall in.’
However, it took over a year for the condition to be properly diagnosed, adding worry to an already stressful time when Kalifa was applying to study at university.
At first, the diagnosis was hard to accept, and Kalifa said that she “just didn’t deal with it.”
She said: “First of all, I thought it was what old people had, and second of all I was in a state of shock, because being told you have a disease is traumatic.”
Kalifa said that many people wouldn’t believe that she had arthritis, incorrectly thinking it only affected old people, and that some people thought she was ‘putting it on.’
She said: “On the train, sometimes I need to sit down, but that was before the lanyards came out, so it would look like some young person who didn’t care about elderly people.
“So I used to have to pretend to call my hospital on the train so I could prove to people that I actually had to sit down.”
Now, she’s calling for more representation and awareness about the condition, in order to help young people with arthritis come to terms with the condition.
She set up an Instagram page LifeandArthritis - to challenge the preconceptions of the condition and help raise awareness.
Kalifa has also teamed up with Versus Arthritis, a charity running a campaign to increase awareness of the condition and eradicate the myths and stigma about it.
One of the myths that Kalifa wants to banish is that arthritis is an ‘old-age’ disease, because misconceptions like those can prevent young people come to terms with their arthritis.
She said that she was “really frustrated” with the myth and said: “It would have made my diagnosis and acceptance so much easier if I’d have known before that arthritis is not a disease for old people.
“It doesn’t discriminate, anyone can have it at any age.”
Kalifa and Versus Arthritis want more representation of arthritis and chronic pain in the media.
She said: “It would help so much and, I can only speak for me, but I’m sure it would make others feel less alienated.
“It would make me feel more included and heard and seen, and that long-term pain in terms of arthritis does exist for young people.
“It is there, and we are here, and we can’t feel ignored any more or pushed to the sidelines.”
More information about the work of Versus Arthritis can be found at https://www.versusarthritis.org/
I would get really angry at my arthritis for holding me back.