#chronic disease

[nightinghoul]

If you have a chronic illness, you may never get well:

A bulleted list, because I cannot process big blocks of words.

You may manage it better or worse than other people with the same chronic illness.

You may have days where you feel Iike giving up.

You may have days where you are at peace with your illness.

You might feel awkward when people tell you to "get well" or ask if you're "feeling better yet".

You might feel hurt when people tell you to just be more positive.

You might want it to just be okay to feel sad, angry, frustrated, or tired, and it is.

You might feel guilty sometimes, because you feel like a burden, or like you're letting everyone down.

You might not be able to work.

You might feel like a faker, because of what you CAN do.

You might need a mobility aid or medical device.

You might have no visible signs of illness or disability.

You might need different accommodations than other people.

You might feel hurt because people say, "I wish I had it so easy."

You may feel like you really need to talk about it, but people don't want to listen.

You may have a hard time convincing doctors to help you

You may need a lot of help and rely on another person or people.

You may have no one to rely on.

You may feel like you are all alone with this experience.

You are not alone.

You are not a faker.

You are not less than.

You don't owe the world your soul.

[thexie-and-stars]

chat turns out I have fibromyalgia

[i-say-stupid-things]

what is it with able bodied people saying “get well soon” after you say that you’re chronically ill?? like? i am not gonna? and i once literally responded with “i’m not gonna, it’s chronic, as in permanent.” and they went like “oh well, hope you get better!” like bro 💀

[tumble-tv]

"kill them with kindness" WRONG run them over in your wheelchair 👨‍🦼 👩‍🦼 🧑‍🦼 👨‍🦽 👩‍🦽 🧑‍🦽 👨‍🦼 👩‍🦼 🧑‍🦼 👨‍🦽 👩‍🦽 🧑‍🦽 👨‍🦼 👩‍🦼 🧑‍🦼 👨‍🦽 👩‍🦽 🧑‍🦽 👨‍🦼 👩‍🦼 🧑‍🦼 👨‍🦽 👩‍🦽 🧑‍🦽 👨‍🦼 👩‍🦼 🧑‍🦼 👨‍🦽 👩‍🦽 🧑‍🦽 👨‍🦼 👩‍🦼 🧑‍🦼 👨‍🦽 👩‍🦽 🧑‍🦽 👨‍🦼 👩‍🦼 🧑‍🦼 👨‍🦽 👩‍🦽 🧑‍🦽 👨‍🦼 👩���🦼 🧑‍🦼 👨‍🦽 👩‍🦽 🧑‍🦽 👨‍🦼 👩‍🦼 🧑‍🦼 👨‍🦽 👩‍🦽 🧑‍🦽

[blitzsicedcoffee]

The mind numbing anger of chronic fatigue is getting irritable because you're so fucking tired but you really feel like you SHOULDNT BE.

You SHOULD be able to sit at a desk and do work. You SHOULD be able to just watch a freaking YouTube video. You SHOULD be able to just eat fucking lunch.

But you can't. Because your eyes are closing and it's like temporary death is taking you.

[4spooniesupport]

[chronicallyillandcoping]

Anyone else find it difficult to remember that abled bodied loved ones are gonna worry when we talk about new/concerning symptoms? Like in my mind its just another day,just a bit more pain, just a flare etc. but for them its different and sometimes i find it hard to be mindful of that.

[houstonxbreed]

Disabled people get criticized and called lazy for being unemployed but nobody wants to discuss how employers won’t hire us because we’re considered a “liability”. Many companies also refuse to accommodate individuals with disabilities. Let’s not talk about how the government takes away our lifesaving healthcare benefits if we make more than $2000 a month and this the reason why most disabled people live in poverty!!!

[cakesexuality]

My personal record is 9, the person who drew it kept calling me "a rockstar" for having that much at once

Please reblog for sample size

[serana666]

Getting on my soapbox about something I think is REALLY important for chronically ill ppl to think about.

Being undiagnosed and disabled is a terrible experience. You’re screaming into the medical void for ANYONE to please SEE YOU and help. You start thinking “is it just me? Could it just be in my head? What’s wrong with ME?”

And I’m here to tell you, it’s 👏🏻NOT YOU👏🏻 it’s THEM. (The doctors)

I have been through the grueling process of becoming totally disabled by chronic illness, without knowing what it could be. I picked up diagnosis’ along the way: RA, then lupus, then fibro. And I am LUCKY that my blood worked with me to show those things, not everyone is so lucky.

I kept thinking (foolishly buying into the narrative doctors try and sell you) that if I could just get a *serious* diagnosis I would finally be given access to the care I needed, that ALL disabled people need. That was never the case at any step in the process.

When I was diagnosed with RA and began having symptoms outside of it, that were completely debilitating my rheumatologist told me I just needed more exercise and activity. I told them specifically I had fatigue so strong that I was loosing the ability for basic functioning.

When I found a new rheumatologist and was diagnosed with lupus I thought my troubles were over. Then she started saying weird shit like “do you have a boyfriend? You’re so pretty!”

She found out I was a lesbian when I brought my girlfriend to my appointment to be my advocate. Her whole demeanor changed to me and I spent 6-8 months with her receiving no treatment. They kept saying “oh it’s the insurance” nope they sent me letters telling me this office was not following up.

So I moved to a blue state literally out of fear that I would die waiting on these bigoted doctors. I got a rhum in a blue state. I was diagnosed with secondary fibro. Again, I foolishly believed I would finally be in the clear. No, she still minimizes and blinks at me when I describe my pain.

Doctors are not our allies, even though they should be above all else. They find ANY excuse to minimize us. So if you are someone who is undiagnosed or with a diagnosis that is misunderstood/not taken seriously , they will milk that for all it’s worth. 👏🏻ITS NOT YOU👏🏻

I’ve seen people in disabled communities minimized for their race, their weight, their gender, their sexuality/queerness, their age, their diagnosis or the lack thereof, ITS NOT YOU!

You know your body, and the pain you feel BETTER than any doctor that has been trained to systemically ignore you!

Don’t let them tell you what your reality is. It’s such a knee jerk reaction for minorities to do this to themselves.

You deserve medical care that isn’t contingent on your doctors bias’. We NEED more empathy. Don’t let their disregard for your life leak into the love you NEED to give yourself. 💕

[neuroticboyfriend]

you can trust the signals your body is sending you. whatever physical symptom you're experiencing is real. your pain, fatigue, weakness, numbness, unsteadiness, malaise, dizziness, nausea - all of it is real. i believe you. even if you, doctors, friends, or family dont. i believe you.

you should have never had the idea that you cannot be the authority on your own body put in your head. you are the only person on this planet who can convey what you are going through. no one has the right to take that from you. please believe in and advocate for yourself. and know you deserve to have someone advocating for you, too.

[myalgicencephalomyelitiscfstom]

[chronicillnesshumor]

[i-say-stupid-things]

psa: you actually are worth it. you are worth the trouble. you are not too much to put up with. your disability doesn’t make you unlovable. you’re not too much of a burden to “put up with”.

you are amazing and lovely and the right person will come and see just how wonderful of a person you are. your disability changes nothing about that

[tumble-tv]

SAY IT WITH ME: MEDICAL GASLIGHTING IS MALPRACTICE

[blitzsicedcoffee]

Reminder to myself: it takes a lot of fucking energy to be in pain