'I have an invisible illness. The hardest part is people's perceptions of me.'

I have an invisible illness. 

It’s called Palindromic Rheumatism. It’s a form of autoimmune arthritis and to be honest, most days I don’t even know that I have it. I’m not on any medication, no physical limitations, I just can’t eat gluten or dairy but half of my friends are lactose intolerant anyway so I’m not special. 

Symptoms can include pain around my joints, stiffness, soreness... probably all of the things you’ve heard about arthritis except the nature of the word palindrome - front to back - is reflected in the symptoms.

Watch: The seven health myths you should ignore. Post continues below.

The pain jumps around from joint to joint as it pleases, leaving no lasting physical damage. 

I probably have joint pain once a week in a miscellaneous knee, elbow or hip. But in 2022 when we spend most of our week folded up like prawns on the couch as we work from home, again... I’m not special for having a sore joint every now and then. 

I haven’t had a serious flare-up since I was diagnosed in 2020 and I’ve only had to take one day off from work for arthritis-related reasons since. 

I’ve found a management plan that works for me and I’m entirely thrilled about it.

But the symptom no one told me about is the way people’s perception of me would change once they knew I had an autoimmune disease.

View this post on Instagram

A post shared by Lucy Neville (@lucymneville)

I see it in people's faces when I make a joke about my joints cracking. They don’t know whether to laugh with me or offer me their sincerest condolences. Laugh, please. 

I’ve never been fitter than I am now. 

I go to the gym most days and still, people will scramble in a flurry of concern when I go to carry something.

In their mind, I’m incapable of moving a chair from one room to another and it often leaves me in a state of polite panic, where I assure them I'm okay and then just let them 'save me' because it’s easier than proving I really am okay. 

I had to go to the hospital for something seemingly unrelated to my arthritis recently and I only told a handful of my closest friends. 

Previously I would have posted it to my Instagram Story, and I’d tell anyone who would listen about how many blood tests I had to have and how sh*t the food was. 

But I’m hesitant to feed into the already established perception that I’m delicate, and that soft cotton gloves are required to shake my hand. So this time, I only told the people who needed to know.

View this post on Instagram

A post shared by Lucy Neville (@lucymneville)

When I told them I got a couple of jokes about how I’ve always got something going on. "You’re only 26! Imagine when you’re older." 

I do imagine what this will be like when I’m older. I’m doing my best to build myself a sturdy foundation. 

But I just summon a laugh, swallow the lump in my throat and blink enough times to make the tears roll back to where they came from. 

Really, what I should have said is: "That’s actually something I’m deeply insecure about, and I can’t join in on this joke at my expense." Next time. Except probably not because I avoid confrontation at all costs.

"We have to make sure someone else is on standby in case you have a flare-up." That’s a sentence that was so casually said to me recently. Immediately I came to my own defence and uttered, "I haven’t had a flare-up in two years."

It’s like I come with a warning sign on me that says 'could crumble at any moment'. Couldn’t anyone crumble at any moment? I worry that I’m going to miss out on opportunities because someone else is perceived to be a safer, more reliable bet. 

View this post on Instagram

A post shared by Lucy Neville (@lucymneville)

I hold no resentment towards anyone for these comments, not even a little bit. They’re all from a place of love and I probably have said similar things to other people before my diagnosis. They just care about me and want to make sure I feel supported - that’s all it is at the heart of it. 

I’m not speaking on behalf of everyone with a chronic illness - this is only my individual experience and maybe this approach is really helpful for some people - but I’ll let you know when I can’t lift that chair. Promise. 

I don’t feel any different to how I did before my diagnosis. Actually, I feel healthier. But that’s about it. I can do all the same things that everyone else can do.

I’ve always been candid about my diagnosis, but now I’m realising that my honesty may have contributed to the impression I’m trying so hard to erase. 

Because to some people... instead of Lucy, I’m Lucy with an autoimmune disease. It’s one of the first identifying features they’ll remember about me and rattle off in a conversation about how we can’t go to that restaurant because Lucy can’t eat there.

I do have an autoimmune disease. It’s true. That’s a fact and there’s no denying that. But I’d like to detach it from your perception of me, please. 

Feature Image: Instagram / @lucymneville.