There are a few things I really need to get off my chest before I go apeshit. I realize people mean well (or do they?), but it does NOT help to be bombarded with useless information suggesting why I’m sick or how to get better. This is serious shit, not a stomachache or a common cold. I am astounded at how insensitive and ignorant people have been about my illness.
I do not have a “tribe,” nor would I want to belong to one, since that would indicate having a leader and doing group things. However, I am attempting to build a team with what little resources I have, to help me with things I can no longer do, or if I need a ride somewhere, etc. No idea building a team would be so difficult, which makes me feel a lot more alone in this world than I ever thought. The fact is, I have felt alone for years, no matter where I’ve gone, even in a building full of people. I feel no connection to most people, period. And I cannot depend on my family in the area, which intensifies the root of the aloneness, forcing me to see everything as it really is instead of what I always wished it to be. A hard pill to swallow.
Unless I get angry and yell or act like a crazy person, no one will listen to a thing I have to say or take me seriously. This is infuriating, because why should it come to this? Someone who has never heard me raise my voice is usually surprised, but I am so sick and tired of repeating myself to people that refuse to listen. I am no longer apologetic for my feelings or my behavior, because if someone isn’t going to help me while I’m struggling here, then they can fuck off.
After seeing numerous specialists and thinking I have MS, because I live it on my own every day, I have avoided some people, because they are horrible listeners. The neurologist has ordered a spinal tap, because unlike everyone around me, she also agrees these are MS symptoms (but testing for other things that mimic it as well). While I have accepted MS could very well be my diagnosis, I think it’s the lesser of evils. But I also think other people are having a harder time with it, because they’re in denial when I tell them what I’ve been experiencing. Or they avoid discussing it further. They have only seen me briefly on a good day, not at my worst. But even on a good day, I am struggling.
Apparently, the struggle doesn’t show, since I get comments like, “You don’t look sick.” Right. Well, lots of people that don’t look sick also unexpectedly never wake up. So there.
I don’t look sick, which is why I have been misdiagnosed for 30 fucking years. I don’t look sick, so I have been denied proper treatment. I don’t look sick, so not a single person or doctor has taken me seriously. I don’t look sick, so I must not know what I’m talking about. I don’t look sick, so it must all be in my head, right? Because I don’t look sick at this very moment.
I am really beginning to see the narcissism in people pushing their opinions about what I am going through rather than listening to what I am actually going through. One-way conversations when someone talks over me or interrupts me – or simply invalidates how I feel and what I have been through this past year. Insisting that I don’t have symptoms, that they’re caused by something already ruled out… Insisting that I can see any doctor I want, because someone else told them that, so I must be wrong. Instead of listening to anything I say, even after explaining it over and over. I feel like I’m beating a dead fucking horse, and I just can’t do it anymore. I’m already tired of fighting to get through each day. Stop making it worse!
The last thing I need are people who drain me that are supposed to be helping me. I am already drained. There is nothing left, and I am quickly becoming numb to certain things and certain people. This has left me with no feeling for certain things, and I have no qualms about telling someone off and cutting them out of my life for good. Being sick for so long has certainly helped me see through people and their selfish ways.
If you know someone chronically ill or with undiagnosed medical issues and you are not a medical professional, please stop using the internet to “help” us. This is some serious shit that some homemade remedy or essential oil isn’t going to touch.
I researched what I think is wrong, based on my own symptoms that I live with every single day. Yet you keep insisting that I am wrong, and you are right. Some of my issues are genetic, and no amount of whatever-shit-you-read-on-the-internet will help. Insisting you know more than numerous medical professionals is complete insanity on your part, so just STOP!
Please stop sending symptoms of things found on Pinterest which I have already discussed, when it’s only a symptom of something larger. I’ve been over this and over this and over this, and now you are adding to my craziness.
Please stop telling me something is wrong with my organs or other parts of my body, and that my blood tests are wrong, when I’ve had blood drawn eight times in six months.
Please stop telling me I have diseases that have tested negative or ruled out.
Stop telling me everything will be okay, to take a deep breath, to meditate. Meditating is impossible when you’re sick enough. When your brain is tingling or feels like it’s on fire or there is a knife radiating pain throughout your entire back, or all you want to do is sleep, meditation isn’t exactly an option. So please stop telling me it will help.
Suggesting I “think away” whatever the hell is wrong with me, as if I haven’t attempted that for the past 30 years, is probably the most ridiculous and useless advice yet. I’m still chuckling at the audacity of that shitty advice.
And no, the vaccine had nothing to do with it! This happened long before covid, if you’d been listening. Besides, I have an immune disorder, so that vaccine and all of the others I have and will have in the future are doing me a huge favor. Again, if you’d been listening to something other than fake news and conspiracy theorists.
“You can’t think that way.” Oh, yes, I can. Because if I don’t, I am only lying to myself and setting myself up for shocking news. There are way worse things than MS that I am not prepared for.
Most of all, please stop telling me I’m depressed, and that’s the reason for this illness! Never in my life have I heard of anyone lose mobility in the left side of their body due to depression, for fuck sakes!! I don’t think the VA would be sending me to all of these specialists for my body being physically deformed because I’m depressed. It’s just another symptom, like I have explained numerous times… and no one fucking listens.
Go ahead and pray to your invisible god in the sky if you think it will help. More power to you, since that weirdo likes to pick and choose who gets to live, suffer, and die.
This is why I feel like I’m losing my fucking mind half of the time. The little human interaction I get is so goddamn irritating to my nerves.
JUST. FUCKING. STOP!!!