On this day five years ago I lost one of my organs. Well, I say “lost” but that implies it fell out as I was walking down the street one day and I didn’t realise – which obviously isn’t the case. Actually on May 18th 2016, after a 4.5 hour surgery, I woke up one organ shorter than before.
Hi, I’m Kathleen, and I am one of the 13.3 million people living with an invisible illness in the UK. I’ve spoken about this in the past on my old ‘sister blog’, Living A Life With…, but since then I’ve closed that blog down and I’ve never republished the content.
My invisible illness isn’t something I can take off and put away when I don’t want to wear it. It’s here to stay much like an unwelcome squatter living in the darks of my body. As much as it would be nice to tell it to leave, I’ll never be able to kick it out. It’s as much of me as my brain, my heart, my blood, and my bones. It’s been here since the start, and it’ll be here till the end.
I quickly came to terms with what was and accepted it. At that very moment I also promised myself I would not let it define me, stop me living my life exactly how I wanted to live it, nor would I let it get in the way of me achieving my dreams and goals.
Last year when going through my phone, I found a voice recording that I completely forgot about. It was recorded two months after my surgery, during which I also decided to take a hiatus from blogging to focus on recovery. The recording caught me off guard as I had no recollection of what I had said until I listened to it. Listening to it, it was poignant.
Now, I think I want to share it with you as it shows how something you say can mean one thing to you but can mean something completely different to another. So here we are. What you are about to read is my two minute voice recording that I’ve typed out to save your ears from my Scottish accent (which isn’t strong at all, but realllyyy does come across in the recoding).
“You’re such an inspiration”, “you’re so strong”. I’ve heard this a lot, especially when I was in hospital, and I know you mean well, but I didn’t want to be an inspiration. I wanted to be back normal again, not to be throwing up all the time or to have multiple cannulas in my hands or tubes attached. I wanted to be back home and live normally again and enjoy life. I didn’t want to be sitting in a hospital bed stuck in the same four walls regretting the surgery and wishing I wasn’t there.
Although most remarks like this are said with only the best intentions, most people don’t seem to be aware of how they are saying it and the circumstance surrounding it, which changes the meaning the words hold and what they are actually telling me. It’s a hard one to explain, but I hope I get the point across of what I’m trying to say.
[My invisible illness] brings its challenges and can be physically difficult and demanding, but it takes a bigger toll on my mental wellbeing. For me, the first issue with being called strong for living with an invisible illness is that it brushes away my struggles and feelings. I’m not strong, and I’m physically and even more mentally exhausted after six years of coping with an invisible illness, and I’ve got the rest of my life to go. I’m living what I thought was a nightmare, being different and alone. I have gone through some extremely tough times, and I will continue to do so, but by telling me things like “I couldn’t go through what you’ve gone through” is like telling me you think my life as an invisibly ill person hasn’t been worth the battle I’ve gone through and will continue to go through. That all the blood, sweat, and tears poured out – sometimes quite literally – is worthless because what you are saying is life living with an invisible or chronic illness can only take a certain someone, otherwise it is not of value. Well that’s wrong, our lives are of so much worth and I want to highlight that. At the end of the day what you are saying comes across as I am strong for living my life and because of that I am an inspiration. Well trust me, you would do it too because an illness or condition doesn’t ask whether you want it or not, nor does it pick people who it thinks can cope with it. And me living with what [my invisible illness] brings shouldn’t be your reminder of how fortunate and ‘lucky’ you are. It shouldn’t inspire you and I’m certainly not your inspiration because I’ve chosen to live my life.