#living with invisible illnesses

[prismatic-skies]

Living with Invisible Illnesses

by Xi

December 1, 2024

[chronicallymistreated]

People only have so much patience for those of us with chronic illnesses, chronic pain, and or mental health difficulties.

At the beginning there is so much support (or at least more support) but when they realise you're not recovering as quickly as they'd like... you get avoided, isolated, told you're exaggerating, etc. They seldom think about how those of us with chronic issues feel. How overwhelming it is to deal with everything day in and day out. There is so much anxiety, depression, grief, etc when dealing with chronic issues regardless of what they are.

If you're even more isolated because people refuse to see how much you're struggling or you're not recovering "fast enough" for the people around you just know you're not alone! There are so many of us in the same boat too

[spookietrex]

I hate the look on able-bodied people's faces when you can't do a thing that you could do the day before. The look of disappointment, confusion, the "Oh but you could do it before. Are you SURE you can't do it?" Like yes, Brenda, I'm sure that I am in too much pain to function/move from my bed right now so going for a walk when I could move 50 feet yesterday without my cane IS too much.

[tucknroll]

when i say “life is such a pain,” i don’t mean it in a nondisabled ‘something unfortunate’ happened way but in i am disabled and i am in so much pain.

[mistressofthemystery]

Western doctors' egos are so big they can't see they're not practicing medicine, they're undereducated glorified drug dealers for capitalism and arms of the patriarchy. I'm burnt out from being gaslit, I'm traumatized from trusting in their "science", I've lost years of my life on waiting lists, only to be disappointed in the end.

Western medicine is implicitly biased against and incapable of caring for autistic people with complex trauma, for women and young people with chronic illness, and for the mentally ill. Pathologizing humanity. Our society is sick and soulless. I know who to call when I'm craving a bandaid for my bullet hole.

[clonerightsagenda]

Contemplating it and I think the reason I've always been fond of ghosts over vampires, werewolves, and other stock paranormal entities is because ghosts, at their core, represent Not Getting Over It. They're grudges. They've defied natural laws in order to continue being a bitch about it. No I'm not going to move on. I'm going to make you look at what killed me. I'm going to keep you up at night. Even if they're not actively hostile ghosts are, by their very nature, Haters. Forget biting people in a horny way, if I had to pick an undead fate you will find me in the basement screaming.

[melodymorningdew]

I love being told that the help I'm given means I owe something to the person who helped me 🙃 Like don't help me, then.

[vexic929]

I think every day before I wake up my body spins a roulette wheel a couple times to figure out wtf is wrong today

[lydiarzack]

Just in case someone needs reminding today: you don’t have to be struggling to utilize your supports.

Those people, shortcuts, allowances, systems, tools, permission, medications, forgiveness, all exist to keep you from struggling, not just for the times when you’re already overwhelmed.

You don’t have to suffer to earn help. You deserve to function.

[thechronicsloth]

The sunflower is the official symbol of hidden/invisible disabilities.

Trans sunflower! For trans people with invisible disabilities. 💙💜🤍💜💙

Feel free to use it and share it online. I just ask that you credit me.

If you'd like to have it on pins, stickers, tote bags, clothes and other merch, these pride sunflowers are all available in my shop.

Let me know if you'd like a particular flag on a sunflower.

[rebellum]

I feel like... Perhaps... Arguing that transphobia is defined by murder and that anything other than murder doesn't even matter... May NOT be conducive to fighting for trans rights.

Like... people want the right to exist as they are. They want to have access to hrt and surgeries and prosthetics. People want access to clothes that fit them and reflect how they want to be seen. People want access to medical care (eg. Getting screened and treated for sex-based forms of cancer can be impossible if you have the "wrong" sex listed to receive those tests). People want to be respected and treated well. People want to not be sexually assaulted and beaten and abused. People want to have access to housing and jobs, and the protection to not lose those things for being trans. People want access to shelters for homeless people or survivors of domestic abuse. People want name changes.

Acting like all of those things don't matter because at least they weren't murderered by an individual (and instead die of suicide or state violence, or survive and suffer) isn't okay.

[rubypomegranates]

"Acceptance isn’t about making you weak from the battle of fighting your disease; it’s about building a smart and capable foundation from which a relapse can’t knock you down.”

Ilana Jacqueline “Surviving and Thriving with an Invisible Chronic Illness: How to Stay Sane and Live One Step Ahead of Your Symptoms”

[spoonie-support]

I'm gonna start wearing a safety pin so everyone knows that I am a safe person.

[lostestleo]

I apologize, I forgot to put a trigger warning before. I do mention suicide.

As a chronic pain patient/advocate who is newish but oldish to the game, I have learned that the argument of addiction is the reason people in pain are not getting proper pain relief. And if you are lucky to get pain relievers, it comes with a big, red scarlet sticker saying the medication “can cause dependency” on the bottle... well, think about it: if you have daily pain, you will need daily relief if you hope to live a normal life.

But there is a major difference between addiction & dependency:

Addiction is an insatiable desire for the medications immediate “euphoric” effects, aka “chasing the dragon” which typically lasts all day. The patient may end up over using/taking much more or all of the prescribed amount within a shorter time period.

Dependency is when the person needs the medication to sustain a decent quality of life. The patient is taking their prescribed medications as directed so that their body can function properly.

An example of dependency is a diabetic patient needing insulin so that they can live.

The problem is that addiction is in everyone, and everyone has some form of addiction that is waiting to be ignited. It is a basic human condition to “want more” and it can be a result of MANY things including a traumatic experience, or even the dreaded “peer pressure” during a high-school party. It can happen with gambling, sex, exercising, even food… It is a spectrum. And it is up to the person to determine their path.

We have reached a new stage of our awful human evolution. Being thin is a societal influence, something that people will kill them-selves for, and we now have everyday people using the diabetic prescription drug “ozempic” as a way to lose weight.

Diabetic patients who are dependent on this type of drug are unable to fill their prescriptions because of the high numbers of non-diabetic people using this drug for their personal gain- pun noted.

To be blunt or a bit dramatic, we could say they are abusing or misusing a diabetics drug.

A person in pain asking for medical attention is shamed, mocked, reported, harassed, and some extraordinary nurses have even taken it far enough to record their rejected “drug seekers” walking out from the hospitals as they’re laughing in the background.

We have been waiting for justice for what seems forever, and some pain warriors have even decided death is better than endless pain… there are so many. It’s not just pain patients either, an ER doctor Dr. Steve Ortiz committed suicide, because he was unable to help his patients. He was continually harassed by the ones who made these fucking rules. He wanted to bring light to the corruption with his death, leaving behind his wife and children in hopes for justice.

And now pain patients everywhere get to watch our society do exactly what they claim to hate us for: abusing someone else’s medication…

Self reflection is free, and everyone should use it daily.

[tears-that-heal]

yeah 😭

[chroniclyillpolybat]

December feels so far:

Living with a chronic illness is incredibly challenging. Every morning, I wake up and assess my pain levels and the medications I need to simply function. Even on my best days, I experience some level of pain. It's hard to accept that I shouldn't be in any pain at all – it feels abnormal.

Simple tasks like climbing stairs are difficult and even dangerous due to my clumsiness. Holding a pen for extended periods causes significant hand pain, making it impossible to enjoy my passions for drawing and painting. It's heartbreaking.

Rhinestoning is currently the only activity I can comfortably engage in, and I cherish its creative outlet.

My mobility issues worsen in cold weather, making it feel like I'm wading through quicksand.

I think I'm slowly emerging from the grief stage of this illness. My life has been completely disrupted, and even after almost a year, I'm still adjusting. My rheumatologist suspects another autoimmune disease, which feels like a cruel twist of fate. It's frustrating to constantly re-evaluate my plans and abilities. I just want to find the right medications and improve my overall function.

I tend to isolate myself to avoid burdening others. I know I need to change this, as I would want support if the roles were reversed. Learning that I am worthy of help is a constant struggle, but I'm working on it.