Features Invisible Illnesses

Invisible Illnesses II: Living with an Unseen Disability

Words by Rhianna Hurren-Myers

Illustration by Amelia Field / @amelialfield

The Story

It was around 1am on the busiest night I’d ever seen at Cardiff’s Student’s Union. Somewhere between the bar and the main stage, I had failed to notice that I had lost the friends I had come out with. Instead, I was preoccupied clumsily tugging on the door of a disabled toilet. 

“You’re not even disabled.” 

I swiveled round to directly face the three pairs of fake eyelashes that had been piercing the back of my neck since I’d stumbled past them. I mumbled a response, but the girls had already turned away, laughing to one another as the line moved forward. 

I took a look back at the curling, territorial queue to the ladies and decided I’d be better off just walking home. Trudging down the back stairs of Cardiff’s student union, I realised my fatal mistake only too late. Just when the end was in sight, a particularly rough security guard grabbed me and said, sorry, you’re trying to exit through the wrong door. You have to go back up and out the front entrance. Back I went up three flights of stairs, back down them on the other side of the building and then up and down the practically vertical Cathays train station stairs. 

By the time I got home, I was in tears. Split responsibility fell to the alcohol consumption (sorry mum), the frustration of being repeatedly misunderstood, but most of all, an all-too-familiar achy pain in my knee that had started before the pre-drinks had even begun.

The Definition 

When I was around 14, I got out of the bath and noticed that my right knee was swollen. It had been snowing, and the day had been filled with steep sledding hills, swirling white clouds, and hand-me-down ski salopettes that were far too big for me. My mother – a pediatric nurse – was quick to trundle me down to our village GP, who was also quick at referring us over to the Rheumatology department of our local hospital. 

Between specialised doctors appointments, X-Rays, blood tests and physiotherapy, we established that the mysterious swelling had a name – Juvenile Idiopathic Arthritis. Juvenile, because I was under the age of 16 when first diagnosed. Idiopathic, because none of the experts could figure out why it had happened or what had triggered it. Arthritis, swelling of the joints. There is no “cure”. 

With that in mind, the pain is best understood on a spectrum, and is difficult to describe. Imagine the feeling in your swollen feet after a 12 hour flight, not splintering or stingy, but still uncomfortably restricting compared to your full movement. Imagine the stiffness you feel the morning after a heavy weight day at the gym, when it takes you a lot longer than usual to walk down the stairs. Imagine your hands at the end of a sunny afternoon, and you’re unable to pull your rings off of your swollen fingers. Imagine sitting on the couch for too long in a funny position and not being able to properly stretch out your legs for a while. 

Perhaps more helpfully, I’ve heard people describe arthritis as, ‘temporarily disabled on a permanent basis’. Crucially, and like many other conditions, what that means is that living with arthritis has its good days and its bad days. 

The Reality

As far as disabled circumstances go, I am fully and uncomfortably aware that I have been dealt a pretty good hand. But there are also unexpected difficulties when living with a condition that people cannot understand in the usual way we perceive disability. 

Aside from the occasional swelling (and it is occasional), there is no obvious, visible way to explain to somebody why I sometimes walk like I am 100 years old. Sometimes, when I’ve told people I have “arthritis”, I’ve been met with laughter because they think I’m joking. I’ve had friends tease me the next day for going home “early” on a night out. I hate the way my pudgy knees sometimes look in group photographs. I always choose trainers over heels and I always feel underdressed as a result. I’ve told people I couldn’t meet up with them that day because I was in too much pain, only to bump into them at the gym a few days later when I’m squatting 60kg. 

In more serious anecdotes, I never really know whether to click ‘disabled’ on job application forms. I’ve lied to academic tutors that I was only wearing a support bandage on my wrist because of ‘repetitive strain’ from all the essays I’d been writing. I live with GP receptionists telling me that the next available appointment they have is three weeks away, by which time the swelling has gone down and, in fear of wasting the doctor’s time, I end up cancelling the appointment. 

The Lesson

I am not the only person in the world who lives with an invisible disability. The situations I have detailed here in many ways mirror the experiences of individuals in similar circumstances, with mental health or chronic pain issues. Conditions that disability ramps and blue badge parking spots don’t necessarily hit the mark for. 

Earlier in this article, I said that Juvenile Idiopathic Arthritis has no known “cure”. But, as stated on the NHS website, there are steps that can be taken to minimise living with the side-effects of the condition. Although this is hard to understand, and although you may disagree, judgement is a side-effect of all disabilities. Unlike the main affliction, however, judgement has a cure – patience and understanding. 

I hope now that you’ve reached the end of this article you understand that arthritis is a lot more than just that thing that your nan has. If you’re reading this in a public space, take a look around. Chances are someone in the room is living with an invisible disability, too. 
For more information please visit JIA, who design, coordinate, fund and deliver a comprehensive and wide range of high quality products and services for all affected by RA and JIA.  – https://jia.org.uk/