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What I’ve learnt from living with chronic pain at Edinburgh

It’s about as hard as you think

I have Chondromalacia Patella in both my knees. Basically, my kneecaps are misaligned which causes them to grate along the cartilage of my knees, which hurts as much as it sounds. After six hellish months of appointments with specialists, I finally got a diagnosis, and am hoping to start physiotherapy soon. However, living and studying in Edinburgh hasn't always been easy for me, suffering with chronic knee pain. Here's what I've learnt.

I have to adapt my life

I, like every uni student, look forward to nights out. Dancing, chatting, having fun, completely carefree and preferably very drunk. Now, however, that is basically out of the question. I can't club anymore, because it hurts my knees too much to stand and dance for hours on end, and at house parties I always have to eye up the closest chair.

I also can't drink, as the painkillers I'm on are super strong, and alcohol can cause a flare up in my pain. I even have to cancel plans sometimes if I'm in too much pain, which means I miss out on bonding time with friends and making proper uni memories as I'm stuck in my room. I pole dance, and now it's a struggle as I can't do moves I used to love because they strain my knees too much.

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Peace away the pain

My academic life suffers

When I'm having a really bad day, the only thing I can do is take my painkillers and try and sleep it off. I can barely walk to the bathroom, let alone to my lectures, so I miss out on what could be vital information. It also takes me so much longer to get to classes and the psychology building, where I have most of my classes, doesn't have any lifts. So I have to hobble up three flights of stairs clutching the bannister to pull me up. Luckily my tutors and lecturers are all aware, but missing a whole day of uni in third year really isn't the best plan.

People don't understand

You well-abled people. You don't understand! The amount of times people ask to buy my codeine off me, when I actually really need it, is so insensitive to my pain. Some are sympathetic and help where they can, but you just can't understand unless you go through it. It took six months for me to get a diagnosis – that's six months of me panicking that I would never be able to run, lunge, or even walk pain-free ever again, and that fear isn't something that anyone could understand. And that's okay, but just keep it in mind next time you ask to buy my painkillers off me.

All the drugs I keep on me on a daily basis

Edinburgh is full of hills

Self-explanatory really. Imagine having knee pain and walking around Edinburgh. You just can't.

I don't look disabled

Because I appear "fine", it's not obvious I have a mobility issue. You have to be really close with me to see me at my worst, when I'm crying because I'm in so much pain or passed out from my painkillers. I have a badge on my bag that says "please offer me a seat", but it never works. I've seen people notice it on buses, then rush ahead of me to sit in a seat, just because I don't conform to society's idea of a disabled person. During the six months of non-diagnosis, I questioned myself too. Was I just making this up for attention? Do I even have anything wrong with me? I was embarrassed about the fact that I couldn't do anything, and that no one could figure me out.

The disability service have truly helped

The disability service were a saving grace. Even before I got my diagnosis, my doctors notes from all the scans and appointments I had were sufficient evidence to get me an appointment with an advisor pretty quickly. I have a plan which gets me extensions on essays if I miss lectures due to my knee pain, and they've even put in a request that all my classes for next semester be moved to the ground floor or to lift-accessible rooms, which is way more than I expected.

So next time you see someone struggling up stairs, or complaining of joint pain, cut them as much slack as they need, and be there for the inevitable days they'll need a shoulder to cry on. And if you're hosting a party, make sure there are chairs.