#potsawareness

and doctors don’t make it any easier than it could be. i’ve been in a chronic illness support group for a while and these are some things i’ve learned that helped me get diagnosed with POTS, ME/CFS, hEDS, and fibromyalgia.

fucking hound them. be on their fucking case. they want you out of their office and the next patient in. they (mostly) do not care. make them take you seriously, preferably while being polite. cussing out your doctor will get you nowhere except kicked right back out of the building.

do not let them send you home empty handed. if they try, say, “can i get in writing on my file that you won’t be pursuing this issue any further?” or something similar. make it be made public they’re not doing their fucking job. AT LEAST make them order blood tests for you. THIS IS ONE OF THE MOST IMPORTANT THINGS.

lie about water intake if you have to. if you say anything other than, “yes i drink the recommended amount of water daily”, they shut you down immediately. you won’t even have a chance.

(obviously doesn’t apply if you drink like one cup a day, increase intake for a few weeks before your appointment just to be sure if this is the case. however if you don’t keep track or drink a little less/inconsistently, a little fib could be the difference between getting a diagnosis or not).

DO NOT LIE ABOUT SYMPTOMS THOUGH. you have to be honest about them. do not exaggerate them for the sake of getting the diagnosis: if you have to lie about and exaggerate symptoms to get a diagnosis, you have to consider that you may not actually have the condition.

keep track of your symptoms. write down things like what time symptoms start and end, what you were doing, how you felt in your body at the time symptoms started, where in your body symptoms were felt, did anything make them go away/ease them, literally anything you can think of. read through the diagnostic criteria of the condition you’re suspecting and apply them to your symptoms.

in the same vein: journal everything. things like daily water intake, vitamin intake, diet, exercise, pain or symptom levels, sleep duration, sleep quality, etc. do not give them ANYTHING they could say “have you tried XYZ?” to. plus, if the symptoms turn out to be caused by something “mundane”, the journal can help doctors figure it out quickly without cycling through dozens of things.

be confident. if you’re not certain on what you think you have, doctors will jump on that uncertainty and give you a bogus excuse. they sniff out anxiety like bloodhounds and will act on it. do not give it to them.

get second opinions. asking another doctor never hurts. if they’re a good doctor, they will go by process of elimination, going through simple things like dehydration and low vitamins, upwards towards your suspected condition. this is often REQUIRED to get diagnosed with disabilities/chronic illnesses, but it is okay if you feel like your doctor is stalling and you want to get through the process faster. THIS IS WHY THE JOURNAL IS IMPORTANT ALSO.

i hope someone finds this helpful

i’m sure there’s other things that i should add, but my brain is foggy right now and i’m having trouble getting all my thoughts down (despite planning and drafting this post).

if any other disabled and/or chronically ill folks have tips for getting doctors to fucking listen, by all means add them to this post.

- falling over and hurting yourself

- uncontrollable shaking

- hyperventilating

- your heart beat being the loudest thing you can hear

- being able to see your chest move due to the heart palpitations (really frightening to witness for me)

- head pounding

- eyes shaking or rolling back

- blurred vision

- disorganized speech or just unable to speak

- hot flushes (feeling "a wave of heat" out of no where)

- throwing up or feeling like you could

- unable to move / difficulty moving

- seizure-like movements

I’ve felt almost ostracized from a lot of CI communities and pages because I don’t have hEDS. hEDS is treated as the “bigger” disorder a lot of the time, which means dysautonomia is treated as an afterthought. It is very hard to find dysautonomia-specific groups that don’t eventually end up being hEDS groups with the occasional mention of dysautonomia.

I don’t have hEDS, nor do I have any other kind of EDS or hypermobility. I don’t relate to a lot of what they are saying, which is fine, obviously. But I’m so tired of the belief some people have that you can’t have dysautonomia without hEDS, or that everyone with dysautonomia has hEDS. That is simply not true. I see so many posts that imply or even directly state exactly that. I even saw one doctor say that if you have dysautonomia, you almost definitely also have hEDS, because hEDS is the cause of dysautonomia, which is just blatant misinformation.

I’m just tired of this attitude. I’m tired of not being able to relate to 99% of the people who post in my own community just because I don’t have hEDS or any of the other disorders common in these circles (MCAS, GP, ME/CFS, Fibromyalgia, etc). Dysautonomics without EDS do exist, and there are a lot of us. Please stop trying to say we don’t.

- 4 absences = a fail in the class

- 3 tardys = an absence

- if you are more than 10 minutes late to class, you’re absent

- oh also class time starts 5 minutes before class starts

- if you have a written diagnosis for anything that would make you late you NEED to give it to her and it will be put in your file and you need PROOF!!!!! that your disability/sickness/whatever is what’s causing you to be late or absent!!!

- absolutely NO falling asleep in class

- absolutely NO phones or devices of any kind unless you have your own laptop to write on(but she prefers handwritten papers)

- absolutely NO recording of the class of ANY KIND. this includes video and voice recordings

- she goes home to a town an hour away after class ends so you can’t stay after class to finish or ask questions!!!!

- at least once every class there is a mandatory “brain exercise” which includes but is not limited to: walking around the building, running in place, jumping jacks, jumping in place, running down the sidewalk and back etc.

- she said “unless you have a written doctors note for why you can’t do this you MUST participate it will go into your grade as participation points”

- absolutely NO extra credit. there is only credit

- she also doesn’t accept late work at all!!! unless you have a WRITTEN DIAGNOSIS!!!!! and if you have an accommodation through the school. you MUST have both!!!!!

so basically she’s the LEAST accessible person on campus?

and we had to pick one topic to write about this entire semester and i chose disability advocacy and activism and that we can do in the medical world AND educational world to make things accessible to everybody who has any condition

i talked about how hard it is to get a diagnosis for some people(me) even for simple things because doctors and teachers and adults and PEOPLE never believe us to listen to us. then after class i told her i have a cane and chronic fatigue and chronic pain and heart issues etc and the only thing i’m diagnosed with is asthma and a heart murmur and i will not be participating in certain activities and i’m going to the school’s disability program and i WILL be getting accommodations without a single doctors note and if she has an issue then i will be dropping her class.

she said she likes my “fire” (whatever the fuck that means) and i’m the perfect person for her class.

and before y’all type and say “it’s just a college thing” and “welcome to real life”. bitch!! one of my professors noticed how tired i am and that i’ve been late like 6/8 classes and saw my cane and said “i don’t need to know your business, but if you need accommodations for ANYTHING talk to the disability program and they can help you with anything you need. if you need an advocate i will be there for you. school should be ACCESSIBLE”!!!! she’s going with me next week to ask if my professors can not mark me down for any tardiness or absences!!!!

my disabilities:

What makes escapism "bad" to most therapists and psychologists is the fact that it's an avoidant habit. That you're "ignoring your problems and refusing to fix them, instead just hoping they get fixed for you."

You can't fix a problem that has no one cause or cure. All we CAN really do while managing symptoms is hope that one day, a miracle comes, and we either go into full remission, or the problem magically goes away.

Even on good days, we still can't do the things we used to be able to do, or could have done if we weren't sick. So we settle for what we CAN do, and sometimes, that is escapism.

Sometimes, it's playing a videogame that makes you remember being outside and playing in the sun. Sometimes, it's collecting things that smell and taste like good memories. Sometimes, it's relying on nostalgia and living through it. Sometimes, it's spending hours listening to music that reminds you of old times while you look through old photos. Sometimes, it's distancing yourself from your social life for a few days because that social life is a reminder of everything that you can't do anymore. Sometimes, it's spending a lot of money on things that give you a small dopamine rush. Sometimes, it's daydreaming, roleplaying, or reading - imagining yourself with a completely different life where you aren't sick.

That may be "escapism," but it is not the same as people who have very fixable problems and run from them. What we do is called coping.

Your health is not your fault. You didn’t do anything to “deserve” this. And you are right, it isn’t fair. You are allowed to feel upset, hurt, angry and jealous that your health, body or mind disables you.