What is chronic invisible illness? Now I don’t know whether there is an actual definition for this, but according to my knowledge it’s a chronic illness which causes pain or discomfort which isn’t visibly evident. The fact that the person is in pain isn’t obvious has led to a lot of accusations that said person is pretending or faking it for the sake of attention or whatever.
Being someone with such illness, I can assure you that it sucks so very much when people think you’re faking it. Believe it or not, I’ve got eye rolls & smirks from people who refuse to believe that I’m in pain as I claim to be so because outwardly I look perfectly fine. I can walk, I can talk, I can sit & I manage to do all this without ever wincing in pain. So why would anyone ever believe that I am in so much pain?
Let me backtrack a bit and start right from the beginning. I have a genetic illness, which I can say is not as bad as many other health issues out there, but it definitely has complicated life for me in a few ways, especially in terms of chronic, intense physical pain, which has also contributed to a major share of my mental burden. Now that being said, I can assure you that since I was a kid, many people have refused to believe that I was in pain. They assumed I was faking it to avoid going to school or to skip sports or whatever other ridiculous reason they came up with. Thankfully I did have medical reports which proved I wasn’t lying & that helped me convince teachers at school. But never the students.
Since I was a child, I’ve had one fantasy, that one day I would wake up and I would have no physical aches whatsoever & I could just go about my day like normal people do. But that’s all that is, a fantasy in my head & I learned that it wasn’t going to happen anytime soon. So I had to adapt to reality & reality was that every single day I woke up with some ache or pain in my body. Back then it was mostly restricted to lower back pains which has caused me a lot of discomfort either when sleeping at night or when I had to sit on a very uncomfortable chair for 8 whole hours for five days a week at school. But there is one particular incident that I’m always going to remember because that’s when I decided I wouldn’t speak of my pains & aches & I would just try to roll with it to the best of my abilities.
I remember it was one of those good days where the pains weren’t as intense as they usually are. It was break time & everyone was going wild, running around, playing games the way kids do. I joined in & was running around but I couldn’t run normally because albeit it being a good day, I still did have a fair share of physical agony. That’s when I heard the laughter & I turned around to see three of my classmates huddled together, pointing at me and just saying stuff about how ridiculous I looked while I was running & it hurt me so very much. I remember just going to a corner & crying & wiping off my tears before anybody could see me. That’s when I decided to stay out of sports completely because I knew I physically couldn’t take it because it worsened my pains. And it’s also when I decided to pretend like I wasn’t in pain.
I was a kid & well I can promise I failed miserably at pretending like I wasn’t in pain. I remember there were so many occasions during which I would just place my head on the desk & sob away. At one point I was very lucky because I found a friend who empathised & understood that I wasn’t faking it. I still remember very clearly the image of her rubbing my back on my bad days & just holding my hand. Sometimes she’s even massaged my legs because I couldn’t take the intensity of the pain & I’ll forever be grateful for that. But she’s the only soul who made it to the list of people who truly understood.
Fast forward to now, I am still in pain and the pain’s actually increased in intensity due to the combination of other health issues. Now I dread waking up because the minute my eyes open in the morning, I am very much aware of the pain in every nook & cranny of my body. It’s become obligatory for me to spend a minimum of ten minutes in the shower every morning because it’s those jets of boiling hot water that helps me get by the initial portion of the day. Sometimes standing is painful. Sometimes sitting is painful. But it’s always painful in some way or the other. And the worst part is in the place I currently am, nobody understands. And it gets to me. It affects me a lot because there are days when I need help but there is no one to turn to due to the mere fact that nobody truly believes my pain because they cannot see it.
They don’t see how crippling the pain is because when I step out of my apartment, I am no longer hunched over in pain, instead I walk straight with my head held high, I am no longer dragging my feet or wincing in pain with every step I take, instead I smile at everyone around me & match their pace. So yes, I understand, it is only natural for people to not believe in me because I look & act very normal. But trust me when I say that I just want to howl in pain whether it’s when I bend down to tie my shoelaces, or when my back is killing me after being seated in one spot for more than 30 mins, or when it feels like someone dropped a boulder over my knee, or when my feet swell up for no reason & my shoes are suddenly tight, or when my neck feels so stiff that tears automatically form at the edge of my eyes whenever I have to look around. I could go on and on and on but you get the point.
I’m not talking about my personal pains on such a public platform because I’m seeking for sympathy. No. I’m only doing this in hopes to create a bit of awareness amongst people that invisible illness is a real thing. We’re not faking it. We are genuinely in pain and in additional to the physical pain, the negative reactions of those around us in regards to our suffering contributes to mental suffering. It’s bad enough. Every single day eats away a part of us. Yes, I’m aware that there are many others out there with bigger issues but that does not mean our pain needs to be ignored or trivialised.
Every one of us is going through something regardless of whether it is physical or mental. Even if you cannot help, the least you can do is be nice. It doesn’t cost you anything to be kind to the ones around you because I know that if the people around me had just been nice to me even if they hadn’t helped me out, it would have made a difference, it most definitely would have reduced my mental pain. The thing is there is nothing I can do to alleviate my aches & pains, I am stuck with this for life. It’s something I have come to terms with, but that does not mean I am okay with it, especially on my bad days when I just want it to stop, where I just want the useless painkillers to work or the for the hot water bag to perform some miracle, but none of that ever happens. And amidst all of this, honestly the least anyone can ever do is just be kind & not trivialise my pain by comparing it with anything else.
[picture credit: Google]