What it’s really like to live with Lupus

The worst part was suddenly losing a lot of my hair


“Lupus, what’s that?”

It’s a question I get asked often. A question I asked when I was diagnosed years after symptoms began. You might have heard Selena Gomez come out and talk about it after having to undergo chemotherapy last year, you might not have. Basically it’s a chronic autoimmune disease that can affect your joints, skin, kidney and other organs – at least that’s the definition you’ll get from your doctor.

However if you asked me, I would tell you about how I’d go on a run one morning, and be bedridden in the evening. I’d tell you about waking up not being able to move my fingers because they’re stuck in that position. I’d tell you about being so tired, napping even more than the regular student is normal. Ladies, I’d tell you about saying goodbye to heels.

So there’s the unpredictability of it. I can be at the gym on a Monday morning looking like one of those #fitspo insta baddies (at least in my head), and the next Monday my joints could hurt so much that walking down the stairs feels like an achievement. There’s the “brainfog”, where I’d go into Boots with two things on my mental shopping list and only remember one of them. Writing essays for uni when you can’t remember every other word makes it seem impossible to finish.

Any joint could start swelling up at any time

For me, the pain is something I got used to with the aid of a colourful cocktail of drugs I swallow every day. My friends sometimes see me take them, wide eyed, probably wondering if they should alert the college welfare officer.

The minimum intake every morning

The biggest shock for me was losing a lot of my hair. It’s cliche – I didn’t realise how much I should have appreciated my hair until so much of it was gone. It started falling out in clumps in the shower and after a few weeks, I had started to part my hair different ways to cover bald patches. I had phoned my family in tears, begging them to help me research how to fix this because the hospitals suggestion of taking supplements hadn’t made much of a difference. Luckily I had very thick hair to begin with, but at the time I couldn’t find any positives to focus on. My femininity was slipping away and there was nothing I could do about it.

In terms of university life, missing out on some events can be depressing, but it makes you take full advantage of your “good days” in a way that I wouldn’t if I didn’t have this condition. On my good days, I want to go everywhere and do everything I’ve been wanting to do when I couldn’t. Being able to walk pain-free is something you appreciate, and no awkward limp that you’re explaining saying “I fell over on friday night” because it’s just easier than explaining what Systematic Lupus Erythematosus is.

It has also encouraged me to live a healthier lifestyle, exercise whenever I can and have a balanced diet (when I’m back home from uni obviously, I’m no miracle worker).

Lupus is a part of my life now, it’s a daily struggle and learning curve that I’ve totally embraced. Having family and close friends who understand it makes it a thousand times better. Shout out to my best friend who has given me medication and put me to bed countless times. Also to the rest of my friends for still inviting me out despite the fact you know there’s a 50% chance I’ll call you two hours before we’re supposed to go and tell you I’m not feeling good. If you haven’t guessed already, I’m proud to say I’ve been crowned the flake of the group.

Relapses are fantastically unpredictable, and if anything it has taught me to plan well ahead, and (more importantly) that not everything goes to plan.

XOYO tonight? Sorry guys, it’ll be Netflix and a bunch of painkillers for me. But now, that’s okay too.