#appointment fatigue

[crazycatsiren]

Nurse: "Are you pregnant?"

Me: "No."

Nurse: "Are you on birth control?"

Me: "No, I'm prematurely menopausal." (It says so on my chart right in front of her on the computer screen.)

Nurse: "Your heart rate is very high, 121."

Me: "I know, I have POTS." (It also says so on my chart right in front of her on the computer screen.)

Seriously, like, they make you fill out all these information online, and then nobody even bothers to read any of it.

[doresworld]

It is so fucked up that disabled people are terrified of going to the doctors

[smadeleine42]

I HATE HAVING TO CANCEL THINGS ALL THE TIME CAUSE OF MY DISABILITY. IT SUCKS SO BAD AND MAKES ME FEEL SO GUILTY. BUT I KNOW ITS GOOD FOR ME AND IM MAKING THE RIGHT DECISION FOR MY HEALTH. UGH

[matchakuracat]

chronically ill/physically disabled people, how do you deal with doctors appointments? what do you say/do to advocate for yourself? im autistic and not diagnosed with a chronic illness yet and i really struggle to know what to say to get them to listen to me and understand so that i can get the help and care i need. even if i bring someone with me, they also need to know what to say and i don't know anyone who understands well enough to explain to the doctor for me, which means that i have to tell them what to say before going. but that's the problem since i just don't know.

i have chronic joint pain that ive had for years but has only gotten worse over time. i also have hypermobile knees which are the worse they've ever been right now. i'm chronically fatigued and barely have the energy to eat and do basic hygiene. i have a few friends that i talk to fairly regularly and im very thankful for them but i still struggle so much with maintaining a social life when i cant even maintain my own physical wellbeing. i only go outside when i absolutely have to/when my pain is low enough and i have enough energy. on average i probably leave my house about once or twice a week, usually to go to medical appointments, to an internship i have once a week or to go grocery shopping. i usually try to do both at the same time if i can (like going grocery shopping after my internship) but most of the time i have to ask my parents to get me groceries since i dont have enough energy to. all i want is to be able to go outside just to take short walks and enjoy nature and the fresh air but i can't do so without the right treatment/a mobility aid. everything im doing right now is bordering the line of too much. im constantly tired and overwhelmed and everything feels like a struggle, even the smallest tasks most people do everyday without thinking twice about it.

i have almost only had bad experiences with doctors and other medical professionals like physiotherapists, which has given me a lot of extra anxiety on top of my already pretty bad social anxiety. i really struggle to make appointments and even more so to go to them, and when i bring myself to do so i really struggle to express myself and explain how i feel and how i want them to help me. i almost always get shut down and offered no actual help with any of my problems. i just don't know what to do anymore.

if anyone has any advice i'd really appreciate it. i know that i can't give up because my life right now without accommodations is too miserable, but i also don't know how to move forward.

sorry if this was hard to understand. i really tried my best to explain but im having a bit of a hard time expressing myself right now due to feeling worse than usual.

[ink-asunder]

The worst thing about burnout is that you have to abstain from "optional" practoces that are necessary for your recover and mental health (hanging out with friends, playing games, going out on walks, leaving the house to do things you like), but you still have to do the essential, exhausting drivel that made you burn out in the first place. Go to work. Go to school. Go to one million doctor's appointments. Because if you don't, you either die or lose access to a vital thing keeping you alive (money, healthcare, etc).

(Btw this post is about physical chronic illness/physical disability related burn out and health crashes. I'm eating once a day. There is no accessibility tip you can give me that will enable me to rest and recoup more effectively. I am having a health crisis.)

[chronicpaingirlie]

the brain fog + boredom + physical exhaustion combo is killing me rn besties

[wearenotdoinggethelpp]

i think part of the reason why i have so much trouble admitting how much I'm struggling physically and with people believing me is because I'm so used to hiding everything about myself and what I'm going through.

i've hid my true interests and passions for as long as I can remember because it's inevitable that people will make fun of me for it. when i was getting bullied in middle school and was having a really rough time with sensory issues, I told my mum. but nothing really came of it, it kept happening again, and again. so I realised it was useless to tell. everytime I told my parents I was in pain, they said it was growing pains. so I learnt to cope with the pain. i didn't tell anyone about the fatigue I felt months after having covid in early 2020 because I could deal with it. i delt with everything else, after all. it was fine.

but now it's not fine, and no-one will believe me and I hate it so much.

(okay quick edit a few weeks later haha: a lot of this is to do with my difficulty articulating feelings and thoughts, and a lot of it is the school system just generally being not great for neurodivergent disabled kids. I am hopefully going to the doctor soon)

[professionalspoonie]

Doctor's Appointment Guide

Dealing with chronic illness and doctor's appointments can be a tough combo. So, how do we make it a bit easier?

For many, appointments can be triggering, so consider doing something that brings you joy before heading in—talk to a friend, play a video game, or grab your favorite breakfast if time allows.

Ever find yourself in the doctor's office with a foggy brain, struggling to remember what you wanted to discuss? Note-taking is a life saver! Jot down your points, bring your notes to the appointment, and voila—no more leaving feeling like you wasted a trip.

And let's talk preparation. Bring a list of your meds and symptoms—those lists can get long, and it's easy to forget. Prep beforehand to avoid the frustration of trying to recall that one nausea med you forgot the name of.

Consider bringing someone close to you —a family member or friend. They can offer emotional support, help you advocate for yourself, and be that extra set of ears to catch what the doctor says.

Dressing for a doctor's appointment is also important. Comfort is key, layers are your friends. Offices can get chilly, and having a tank top underneath makes life easier if they need access—especially if blood needs to be drawn.

Speaking up for yourself can be tough, trust me I get it. If it's a struggle, practice with friends or family. Maybe have them tag along so you feel more comfortable speaking up for yourself.

Post-appointment, wind down and digest the info your doctor gave you. Write down tasks like picking up meds, scheduling follow-ups, or arranging referrals and tests.

These tips work for me—may not all fit all of your needs, but hey, sharing is caring. If you have anything that helps you personally feel free to share and help someone out! Hope all your appointments go well :)

[albatris]

either today was a bizarre fluke or this new medication is going to be a gamechanger

[turndecassette2]

OK prev posts read a bit too much like, partaking in the ongoing trivialisation of w/e gaiman has been up to & as a casual reader of his I have no stakes in defending the guy. I feel in my heart the way we view comics as primarily a product of the writer w the artist/s as an afterthought is wrong & annoying but there might be better places/times to vent this compaint

[crazycatsiren]

I know I've said this before but I'll say it again: I make sure my health information and medications are up to date at all times, so that I don't have to recite everything from memory every time I'm at a medical appointment, because I have medical appointments literally all the damn time. Isn't that the point of patient portal/my chart/whatever the fuck online system medical practices give us to use to keep track of our shit these days?

You'd think nurses would know how to read online medical charts that even I know how to read down pat because it's a part of their job on a daily basis. You'd think "everything's up to date as of today" is good enough. Otherwise, why are they even pulling up my online information to begin with. You'd think they wouldn't need me to tell them that they missed something when all they have to do is read off of a list on a large and clear computer screen in front of them. "This medication is not listed" yes it fucking is because I checked all of this stuff this morning before I got here. You went to nursing school, I assumed you can read.

[doresworld]

This afternoon I had one of the worst doctors appointments ever, which is saying something, but at least I didn’t have a panic attack this time. 

So in no particular order, I was told:

I obviously present feminine - in response to asking me my pronouns (they also gestured to my outfit, cane, and decorated rucksack, so I’m burning all of this and never wearing it outside again) 

There’s nothing they can do as I’ve tried everything they can offer 

To stop taking my meds as they’re not working, but no attempts to offer me anything new

That said medications aren’t even down as repeat prescriptions as they’re all for ‘acute treatment’ (note that I’ve been on these for almost two years for most of them) 

Told that there’s no point me doing anything about my gender identity as the waiting lists are too long, and I wouldn’t be classed as a priority

That because I’m unemployed it doesn’t matter that I don’t sleep properly because it’s not like I need to get up for anything 

The only place in the country that does immunology tests won’t test me as I’m not actively in anaphylactic shock so I need to find my own ways to treat my symptoms 

When asking me about why I’m unemployed, they asked if it was due to pain, I said yes, but also because I don’t have the right qualifications because I had to drop out when I got sick, and they said ‘how sick? And how was it serious enough to drop out’ - I guess they completely forgot that I am permanently sick as in disabled ??

[kimiko24]

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[identitty-dickruption]

hey fellow chronically ill people: those ads meant to guilt you into donating blood are not for you. they’re for healthy people who are able to donate blood. they don’t want you to sabotage your health by donating, they really don’t. if your health allows you to do it then by all means go ahead! but don’t feel bad for not being able to, okay?

[sebs-out-of-spoons]

have an appt with a cardiologist on November 4th!! i need it to get here faster 0-0

[endometriosismemes]