Invisible Disease

18 | endometriosis | chronic pain | chronic fatigue | spoonie |

[rubyetc]

it’s ok 

[michaelblume]

*opens pill botttle*

*opens water bottle*

*pours some water out into my hand*

“Wait. No, that’s…no.”

[exigencelost]

Me on a daily basis: no person in the history of life on this planet has ever been as tired as I am right now

Me, remembering that I was actually more tired than this yesterday: listen,

[prettypunkdollie]

I work in a hospital and the subject of the narcotics epidemic got brought up at a nurses station

I basically said “well a lot of these people can’t afford prescription medication, so they use a back alley or dark web drug dealer they find and then the narcotics ends up being tainted with something else, or is a much higher dose than normal and they OD”

One of the nurses gets really pissed off and says super offended “well they just need to find another way to manage their pain without popping pills. My dad got in a bad car accident and he found other ways to deal with pain”

I didn’t press the subject further but mentally I was rolling my eyes out of my head. Good for you bitch? The problem here is that able-bodied people aren’t dealing with chronic inflammation. They aren’t dealing with swollen joints or if they put too much weight on one joint, there’s an audible “pop” sound.

Oh, you messed up your knee from a bad fall? Well imagine that, but everyday of your fucking life for people dealing with chronic joint pain.

Some days are better then other days with chronic pain. If you don’t have chronic pain, you have NO ROOM to speak on what chronically Ill patients should “actually be doing” to cope with pain. Many chronically ill patients can barely get out of bed without being tormented by very bad physically pain. I’m not exaggerating anything here.

[endostruggle]

I am so thankful for my amazing amazing amazing surgeon. He removed every single last bit of my stage 5 endometriosis. I will always have chronic pain and it is still hard on most days, but I am at peace with my diagnosis and can start moving forward in my life with chronic illness. It does not have the best of me but I am going to make the best of it.

[helpmequitmydayjob]

I want to run away but it hurts to walk

[chokkilissa-nahollos]

i understand that my friends don’t wanna talk every day. i understand that my s/o doesn’t wanna be lovey dovey and super indulgent every day. lots of people need rest from performative emotions. all people need rest in general! it’s okay!! it doesn’t mean they don’t love me!! it’s not a judgement or punishment!! they deserve to take their rest, and they deserve for me to treat their needs with respect!

[ro-beau]

not a lot of ppl grasp this.

[spoonie-humour]

Horrifying new symptoms: *appear*

Me:

[hotelhalsey]

[beastmac]

you ever do a little research on an illness you have and it’s just fucking depressing as fuck

[thunderlullabye]

The things you’ve been wanting to hear but that no one will tell you because they don’t realize how difficult a chronic condition can be:

It’s so hard. Damn, girl, it must be so difficult trying to coordinate 5+ different doctors’ appointments with a full-time job. Do you have benefits? Do you get paid sick days or time off? That sucks that you have to leave work unpaid just to be able to take care of your health, and that it consumes entire days.

You relocated to a new city and have to find an entire new team of doctors? That must be frustrating and difficult, especially since the relationships you built with your former doctors were important. I know you don’t just rely on doctors for prescriptions but also for emotional support. You’ve had the same rheumatologist since Day 1 of the conversation about rheumatoid arthritis, and she’s been awesome with you every step of the way. It must be hard to have to say goodbye to someone you trust and appreciate as your doctor and start over from scratch with unfamiliar faces. Not only do you have to worry about whether these new doctors will even take your insurance… but will they know what they’re talking about? Will you trust them? Will they listen to you? Will you like them or will you dread these time-consuming, frequent visits even more than you already do, which shouldn’t be necessary?

Hey, nobody really understands what you’re going through. People want to be there for you. (Do they?) 

You’re so strong for handling all this!!!!! It can’t be easy. And it’s okay if you’re upset or frustrated or impatient or stressed or angry. You’re going through a lot, and these are normal feelings. It’s normal to feel frustrated since nobody will really understand unless they also have a chronic health condition. It’s normal to feel isolated because you’re 23 and sometimes feel like you’re 70 with all the doctor appointments you need to make, and meanwhile your 23 year old friends are drinking and partying next door without a worry. It’s normal to feel angry when doctors’ visits consume entire days of your week, because you’re ambitious and busy and have things to be doing other than sitting in offices waiting for another new stranger to bark at you about insurance policies. It’s normal to worry about romantic relationships, because who will want to have to deal with this crap and your days of feeling low when shit hits the fan?

You’re a lioness. You handle all of these hurdles with such grace (at least 70% of the time). You work hard, bring light into a room, tear up a dance floor, and get shit done. On top of this shit!!!!!!

It’s okay to be sad about it sometimes. You try so hard to stay strong.

You’re strong!! You’re awesome!! You got this girl and I’m here for you if you ever want to talk or vent or have supportive company!!!! (omg can you imagine if people could be empathetic enough to say that to me)

[flyingpurplepizzaeater]

ask your doctor what the fuck

[trash-father-deactivated2018013]

Healthy people need to realise that tired because you had a tough day at work or stayed up till 2 on instagram is very different from the fatigue caused by constant pain and chronic illness.

[openyoureyeslove]

I wish more people talked about the guilt disabled children feel for being such a financial burden to their parents, because even with the best parents and great insurance it sucks to know how much money you cost the family

[algae-dad-deactivated20191005]

me at the doctor’s: hey can you just test me for… Everything

[susielesbian]

me this morning: today’s the day i Get Stuff Done!

by 9 pm:

[spongy-moments]