Have you ever screamed so loud and high that no sound escapes your mouth?
This has been my reality for years. Pain in muscles and joints, pain in my kidneys, fatigue so extreme that I fight to stay awake and even sleeping for hours doesn’t make it go away. I don’t think anyone really understands what it’s like living with lupus, so I’ll try to explain one last time in hopes someone will listen.
I’m so tired right now, so stretched to my limits in a way that makes me not want to fight anymore. I’ve tried to ask for help, tried to break down everything to make it easier. They’ll tell me to just be positive. They look at me and think, she’s just depressed. And I try to tell them I need rest and help and medical care, but no one is listening.
So then, I want to stop talking. I want to curl into a ball of nothingness and waste away because I’m so tired of talking with no one listening.
This isn’t about looking at the brighter side. And I can’t even begin to fucking tell you how tired I am of hearing that. How unheard I feel everytime someone says it. I spent most of my life looking for every shred of hope in impossible situations. And I’m especially good at find it, especially good at flipping a situation on its head and pulling hope out of the ass end of nowhere, so this isn’t that.
This is waking every single day to joint pain that makes me fall to my knees. It’s muscle pain so severe I can’t lift our four year old most days. It’s fatigue so intense I find every way, including pinching myself and unwise amounts of caffeine, to keep my eyes open.
They think because I have good moments, because I have spurts of determination, because I can smile sometimes and make light and jokes that nothing is really wrong. They think if I just changed the way I look at things that magically I’ll get better, but I won’t and I don’t… and no one understands.
I think often they feel like I’m being difficult, that I’m just depressed, and eventually it’ll pass, but it doesn’t because it won’t because I have lupus. I have an illness that treats my entire body as an enemy, and then attacks it. Warm sunny days won’t make this go away because I won’t be able to stay out in them for long without extreme measures to coat and cover myself. This isn’t about vitamin D deficiencies, although I probably need some.
It’s about lupus, and the fact that I’m done talking to people who are simply waiting for a chance to respond with self-help mantras because they don’t know how to listen or simply don’t want to acknowledge that anything is wrong.
If you’re in any way interested in finding out more check out the video.