Invisible Illness and Me // Arthritis & Uveitis

So, I’ve got Arthritis! If you haven’t watched me on YouTube then it’s probably not something you would know about me. I’ve decided to talk about it on my blog today as if you read my previous post you’ll know that I’ve felt like my blog and YouTube channel were not connecting properly and I feel like the fact I have never spoken about my health on here was probably why. Before I get into talking about my experiences with Arthritis now it’s probably best I start with telling you a little bit about my experiences growing up.

I was diagnosed with Juvenile Arthritis at just 18 months old. I’m lucky to not hugely remember what it was like to be this young with Arthritis so I think it’s best I tell the beginning part of my story from my mum’s perspective.

My mum was obviously delighted when I started walking at 11 months and from this point I was a very active little child then at about 15 months I confusingly for my mum reverted back to crawling. My mum took me to the GP and after a lengthy process I was diagnosed with Juvenile Arthritis at 18 months. After this came a string of hospital appointments, medications and some very strange tests.
My Arthritis improved as I got into my teenage years and I was discharged from the Rheumatology Clinic at around 13 years old. My Arthritis did leave me with Chronic Uveitis (I have a video all about this if you want some more informationand a ‘possibly’ connected hearing loss. So these endless hospital appointments have never left me. Last summer I experienced my worst ever Uveitis Flare up leaving me temporarily blind in my left eye and am now back on medication for my Arthritis after years without a flare up. Although being left with Uveitis has meant that I’m no stranger to hospitals and medication it hasn’t made being treated for Arthritis again much easier. Having to deal with a pain that I seem to have blocked out previously experiencing has been an emotional roller-coaster.

So now you know a little bit about me I wanted to talk a little about what it’s like being invisibly ill. This is something I haven’t really addressed on my YouTube channel but something I have been thinking about a lot recently.

I am very open about my illness, with my friends and family, with my boyfriend, with people at work. And I feel like I am this way because if I didn’t tell you I was ill you would probably have no idea. Luckily for me my arthritis hasn’t left me with any visible signs and why I am obviously very thankful for this, looking well can often mean that people find it a lot harder to understand what’s wrong with you an how you’re feeling.

Obviously, this isn’t so difficult around my friends and family. They know exactly when I’m feeling crappy and completely get it. But the hardest place to look well when you’re not has to be in the work place. It’s unimaginable hard to explain to work colleagues how you’re feeling when you look fine. People are so much more in tune with the visible sides of being and they find it much easier to empathise with and I completely understand that. But for me sometimes I want to tell people how much pain my wrist just put me in for the last half an hour or how my eyes completely lost focus and I can barely read my screen but in the back of my mind all I think people are thinking is ‘but she doesn’t look sick?!’.

And, I’m well aware this is probably my own personal experiences that make me feel like this and that the majority of people understand but it’s still something that always crosses my mind when telling people about myself. I feel like this is why I am so open about talking about my health on my YouTube channel and to basically anyone in real life that will listen. Because, although I am so thankful that my Arthritis has left me with no visible disabilities I don’t want my illness to be completely invisible. I want people to be aware that its part of me and something that effects me daily and it’s not something I should feel like I have to shy away from because I don’t look sick.