61 replies to this topic

[cara]

I'm not entirely sure what ableism is, but I see others ranting about their experience with being mistreated in the healthcare system and society so Imma go ahead and do the same.

 

It took years for them to diagnose me with celiac disease. I was in the hospital only once, and not because the pain was more than usual, but because I was so frustrated with it that I said 'fuck walk-in family doctors, I'm SURE the hospital can help me'. Well I was sooOooOO wrong. Turns out I had a stomach ulcer, they gave me some medication and sent me packing. I would have pain so badly after I ate that I would have to lie down in the washroom afterwards. On the floor. In public washrooms. I have lied down on so many public washroom floors it's unreal. Years later, a family doctor spoke to me about my re-occurring ulcers and complaints of pain. And shortly afterwards, I was diagnosed. YEARS of physical pain after eating was gone. Years of mis-diagnosed UTI's and unnecessary antibiotics was over.

 

Now I'm happy, pain free, and just need to deal with everyone I encounter hating me because I can't eat gluten. Because despite countless studies showing that gluten is harmless when you are not allergic, some twat wrote 'Wheat Belly' (widly scrutinized and generally debunked), a bunch of hipsters believe gluten is bad and have kicked it from their diet. So everyone thinks I'm some obnoxious hipster who elects not to eat gluten. Which I have come to terms with, because god bless those hipsters for making being gluten free a popular trend and thus easily available to me in most restaurants. 

[Swar]

People don't seem to get that celiac disease does make you gluten intolerant and not just a pretentious douche bag. 

I don't think it's a matter of people not knowing that celiac disease makes you gluten intolerant, because, well, that's all it does. It's more of a thing that people don't really know celiac disease is a thing

 

We had a patient last month that had pain and lots of cases of diarrhea in the past few years, and my teacher asked for an exam for celiac disease, and it was positive. I couldn't begin to imagine the pain she felt. I'm glad you were finally diagnosed after so much suffering @cara (unfortunately it took you that long though )

[cara]

People don't seem to get that celiac disease does make you gluten intolerant and not just a pretentious douche bag. 

 

Yup, basically. I don't know why people get so automatically aggressive and annoyed when I tell them I can't eat gluten. I see similar responses with people who are vegan.

 

I don't think it's a matter of people not knowing that celiac disease makes you gluten intolerant, because, well, that's all it does. It's more of a thing that people don't really know celiac disease is a thing

 

We had a patient last month that had pain and lots of cases of diarrhea in the past few years, and my teacher asked for an exam for celiac disease, and it was positive. I couldn't begin to imagine the pain she felt. I'm glad you were finally diagnosed after so much suffering @cara (unfortunately it took you that long though )

 

Yup, it definitely sucked. I'm so happy to hear that she got a diagnosis, though. It's shitty to not actually know what's wrong with you, especially when it's such a simple solution. 

[Arnie]

I never thougth 'ableism' was a thing.

 

Even if have been througth that myself. I have a knee problem [and other things, but the knee causes physical chronical pain, so its the heavier thing, i guess], a lesion that allways come back, repeats and hurt. But i've never considered myself disabled, i don't know, i feel it's just a think that makes me walk slower, wear a knee bandage to keep everything in place and take stairs one step at a time.

 

But if i think back, since i have to live with this, my life is so different.

I had that first "accident" when i was 18 and i was already in my first adult serious job [working in a government office], i treated it like it was a minor deal, cause the doctor did it himself. But i happened again 6 months later, then the next year. [I don't have the english skills so explain the accidents and injuries, sorry]

 

They send me to the medical care service for the employees, to open a file for "working/labor accident", cause it happened allways in the bus, way from home to work. The first they asked was "What kind of shoes were you wearing?" [track boots, non slippery] ...And i was like "Hold on, lady. Are you trying to find out a way to say this is my fault?!" At the end of the exam they said my employeer had to pay a compensation for the accident. Four years and other three accidents later, i ended up quitting that job and got any kind of compensation for those accidents that practily ruined my life. I used to run, skate and stuffs, but after that i locked myself and turned into a sedentary person. Not to mention the weigth gain that came with that, and the fact that it just did make things worst. Now any doctor who sees me for this injury says its my fault "you are too heavy for a person your height, go diet" [well, thanks to the food shortage in venezuela i lost almost all that weigth, lol]

 

A couple of years later, i decided to go serve a year of military service [for reasons i won't explain now]. I know, it was a stupid decision, but i had therapy and went better, i was healthy enough to run short races, i was really recovering.

But some way, i ended slippering and falling on my feet, from like 60cms. No need to say it was the worst accident ever had, i used a crutch and a wheelchair for first time in my life [and i can say i don't like that!]. I spent a whole week without taking a bath because i was wearing that cast on my leg and i was unable to bath myself normally.

 

Due to that i became friends with a sergeant who had a major injury in his arm, other officials used to make fun of his reconstructed shoulder, said he had a titanium shoulder but was unable to do some stuffs, and he needed special treatment.

He just not took me to the hospital when the accident happened, later he came to me with some advice about being off for an injury. For example, I learned to not take pain killers so ofteen, because pain can help you know when you are not all rigth to do certain things.

 

I became a useless soldier, the captain put me in the office to do boring and stressful office work, i had more responsabilities than any other soldier, serious things like i was a officer on command of planification. But even working that hard, the others thougth i was having special treatment, they used to call me "the civil soldier", and said i wasn't working as hard as them.

 

Officers from other units were also dicks to me. I hated to go out to other units, they were fucking mean.

-Stop there. Why are you going downstairs that way? What are you? Two years old? Cant you use stairs like a grown up?

-I can't fold this leg, i have a severe injury and i'm wearing a tigth bandage. It hurts, now, i got to go, sir.

And...they used to get mad because i did not obey their orders, threaten with get me in troubles with my unit captain.

 

Now that is over, but i still have to hear things like "you are too young for that kind of problems". Yes, i would like to have a healthy pair of legs, but i don't, now shut up.

 

I have learned to endure it. The medicine shortage is really hard rigth now, i really learned to live with out pain killers, but there are times when i need i them but i just shut up and rest, at least my family understands.

[NapisaurusRex]

Now I'm happy, pain free, and just need to deal with everyone I encounter hating me because I can't eat gluten. Because despite countless studies showing that gluten is harmless when you are not allergic, some twat wrote 'Wheat Belly' (widly scrutinized and generally debunked), a bunch of hipsters believe gluten is bad and have kicked it from their diet. So everyone thinks I'm some obnoxious hipster who elects not to eat gluten. Which I have come to terms with, because god bless those hipsters for making being gluten free a popular trend and thus easily available to me in most restaurants.

There's multiple studies showing non-celiac wheat intolerance (zonulin activity actually appears in ALL people in reaction to wheat, it's just much stronger in celiacs) to be real and it's referenced on all the reputable celiac websites, at least, here in the US. The issue is that people assume that gluten is the only thing wrong with wheat and that celiac and allergies are the only problems people can have from it. I've had doctors flat out refuse to order celiac testing for me because I don't have gastrointestinal symptoms, even after I show them that symptom is more common in children and I have multiple symptoms of it more common in adults. I can't WALK because I get in so much pain and my hands get covered in "eczema". The response I get ranges from "well it can't be wheat" to "stop eating wheat then" and then on top of being a shitty obnoxious hipster who doesn't have celiac or allergies, I'm some kind of liar who doesn't believe in science because non-gluten sensitivity "doesn't exist".

[Coops]

You guys are describing experiences involving ableism. @cara @Arnie

 

I'll make a list of great literature that discusses the history of ableism, the structure of power that favors abled individuals, and why it's systemic/institutionalized and stuff. I'll post it later when I get home from my sick people meeting.

[Swar]

@Arnie I'm sorry that you went through all of that. Have you gotten any closure on why those accidents keep happening, at least?

[Arnie]

@Swar

I have a complete diagnosis from the accident that happened in the military facilities; i know what is wrong with my knee [can't tell, my medical english sucks, i need to improve that]. Also, i have been on therapy and even took my eskeptical ass to acupuncture sessions, all that worked and i was able to use stairs normally and walk correctly.

All fine until last year, it happened again, twice... And i wasn't even doing anything risky, just walking sidewards in the bus. Buses are evil.

[Arnie]

Acupuncture actually helps?

It helped me, i can't tell about other cases or other kind of injuries. But i was suprised about being able to walk normally after a couple of months of therapy with the "porcupine old man".

So you beleive in kindness and good vibes? I don't, but the acupuncture therapist was a generous nice grandpa who used to attend everyone in his home without charching a single penny. He did it for free! Used to gave you a great talk while you were sitting in silence [he told me you can't talk during acupuncture]... a really great man to learn from.

Sadly, he passed away the year after.

[Swar]

@Swar
I have a complete diagnosis from the accident that happened in the military facilities; i know what is wrong with my knee [can't tell, my medical english sucks, i need to improve that]. Also, i have been on therapy and even took my eskeptical ass to acupuncture sessions, all that worked and i was able to use stairs normally and walk correctly.
All fine until last year, it happened again, twice... And i wasn't even doing anything risky, just walking sidewards in the bus. Buses are evil.

Ah, I see! Do you think you could explain in spanish? I can understand some of it with my portuguese knowledge

[Arnie]

@Swar, @Amethyst, i just checked on the inform from that incident, long list.

Well, acording to the inform i ended up with:

-Edema oseo en superficie articular del cóndilo femoral.

-Edema difuso en ambos cuernos de menisco

-Edema oseo focal subcortical

[at this point, i have lots of knee fluid goin around out of its place, nice]

-Subluxación lateral de rotula

-Micro fracturas intramedulares [the hell... ]

-Esguince de ligamento colateral interno de ambos [ligamentos] cruzados

-Hoffitis

-Peritendinitis rotuliana

 

._. It's amazing how much damage a person can take at once.

Edited by Arnie, 30 September 2017 - 04:46 PM.

[Swar]

@Swar, @Amethyst, i just checked on the inform from that incident, long list.

Well, acording to the inform i ended up with:

-Edema oseo en superficie articular del cóndilo femoral.

-Edema difuso en ambos cuernos de menisco

-Edema oseo focal subcortical

[at this point, i have lots of knee fluid goin around out of its place, nice]

-Subluxación lateral de rotula

-Micro fracturas intramedulares [the hell... ]

-Esguince de ligamento colateral interno de ambos [ligamentos] cruzados

-Hoffitis

-Peritendinitis rotuliana

 

._. It's amazing how much damage a person can take at once.

 

Oh shit, poor knees the only thing I didn't know about was hoffitis but from what I saw it also sucks like the rest of them

[Romy]

Is it weird that I wish I could xray your knee @Arnie ?

[Arnie]

Oh shit, poor knees the only thing I didn't know about was hoffitis but from what I saw it also sucks like the rest of them

Well, it was a big fall that time, i havent have a resonance exam ever since then. Curious about if something is better with that knee.

 

Is it weird that I wish I could xray your knee @Arnie ?

Not at all. But it will probably be boring, most damage is on soft materials, which means it can't be seen with X-rays.

You would have to use a resonance scanner.

Are you an X-ray tecnician?

[Romy]

Not at all. But it will probably be boring, most damage is on soft materials, which means it can't be seen with X-rays.

You would have to use a resonance scanner.

Are you an X-ray tecnician?

No. I want to do forensics for a living and have an unhealthy obsession with bones

[Romy]

I knew you were secretly gay.

[CrazyPancakes]

For me, I find it hard to seem like a functioning human being and talk to people about my life.  I am expected to have a higher education, have a job, and have a healthy social life.  Though, I have shcizoaffective disorder and am most likely going to live my whole life working at best a minimum wage job and live off of disability.  I've been told that "that's a shit life".  Well, yah, pretty much, and I've accepted that.  I don't really like pretending I'm normal, I actually got myself out of a deep depression by accepting my mental illness and fighting with it rather than hating it and trying to fight it.  That's something that's hard with schizo problems is I'm aware of my delusions/paranoia/etc, so I know how to hide it, and I'm really good at it, too, so I seem normal on the surface.  I find myself in too many uncomfortable conversations.  I've found it so much better when I'm blunt and I'm just like "naw, I can't work or go to school, I am not mentally healthy enough."  

 

Apologies if this doesn't even fall under ableism.  It feels like it does so //shrug.

Edited by ArchaicLullabies, 02 October 2017 - 06:30 PM.

[NapisaurusRex]

For me, I find it hard to seem like a functioning human being and talk to people about my life.  I am expected to have a higher education, have a job, and have a healthy social life.  Though, I have shcizoaffective disorder and am most likely going to live my whole life working at best a minimum wage job and live off of disability.  I've been told that "that's a shit life".  Well, yah, pretty much, and I've accepted that.  I don't really like pretending I'm normal, I actually got myself out of a deep depression by accepting my mental illness and fighting with it rather than hating it and trying to fight it.  That's something that's hard with schizo problems is I'm aware of my delusions/paranoia/etc, so I know how to hide it, and I'm really good at it, too, so I seem normal on the surface.  I find myself in too many uncomfortable conversations.  I've found it so much better when I'm blunt and I'm just like "naw, I can't work or go to school, I am not mentally healthy enough."  
 
Apologies if this doesn't even fall under ableism.  It feels like it does so //shrug.

Yeah, i think it does. Your experiences are being invalidated and you're expected to have a "better" life despite what you know you're capable of.

[Coops]

For me, I find it hard to seem like a functioning human being and talk to people about my life.  I am expected to have a higher education, have a job, and have a healthy social life.  Though, I have shcizoaffective disorder and am most likely going to live my whole life working at best a minimum wage job and live off of disability.  I've been told that "that's a shit life".  Well, yah, pretty much, and I've accepted that.  I don't really like pretending I'm normal, I actually got myself out of a deep depression by accepting my mental illness and fighting with it rather than hating it and trying to fight it.  That's something that's hard with schizo problems is I'm aware of my delusions/paranoia/etc, so I know how to hide it, and I'm really good at it, too, so I seem normal on the surface.  I find myself in too many uncomfortable conversations.  I've found it so much better when I'm blunt and I'm just like "naw, I can't work or go to school, I am not mentally healthy enough."  

 

Apologies if this doesn't even fall under ableism.  It feels like it does so //shrug.

That does fall under ableism. @Jess nailed it basically. It really sucks people lack understanding and empathy for your mental illness.