Invisible Disease

*opens water bottle*

*pours some water out into my hand*

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.

Me:

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.

by 9 pm: