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Medical Asthma, trauma, and shame

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Justmehere

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My entire life people have been giving me crap for having asthma attacks in response to incense and other intense fragrances. What the heck am I supposed to do about this?! Just stop breathing?! I have never shamed another person for whatever they want to use, just left the area and tried to get my ability to breathe back fast. I don't enjoy turning blue. But getting mad at me because I can't breathe?

I don't have asthma attacks often. But when I do it means:
1.) I am really sick already...
or
2.) around some kind of fragrance I am severely allergic to...
or
3.) there is a wildfire nearby!

As a kid, I remember sitting on the bathroom floor, my father yelling I was just anxious (was the yelling supposed to help the alleged anxiety?) and watching my lips turn blue. A family member in the medical profession came to haul me off to a psych hospital but after I passed out trying to meet their demand to walk now, they listened to my lungs. I was then rushed to the ER for an asthma attack. It was the only time a family member apologized. My parents came and still gave me hell for it. Doc gave me an inhaler in the ER, my father gave me more bruises back at home for the trouble.

As an adult, the most recent incident was today. I don't know how to handle this. I hate it. It's rare but every now and then I have to leave a space and try to stop the asthma attack. It's been 16 months since the last time? I avoid telling anyone why unless it's absolutely mandatory I go back into the area and I have to explain why I absolutely can not until it's aired out or something. It feels awful to have to say that. It's been 3 years since I had to tell someone... and it's been 2 times in a few weeks. I hate me. But when I'm standing in the bathroom sucking on an inhaler trying to pull my sleeves down long enough to hide the hives... what else do I do...?

I had to spend time in trauma therapy working on a fear of not being able to breathe. We kept trying to deal with other things, and I kept telling her I would feel like I could breathe but then have a sudden fear I would soon not be able to breathe. We spent sessions with me purposefully holding my inhaler in my hand to remind me I have tool to help me breathe. I'm pretty good at monitoring it and managing it. I don't fear it generally anymore until I'm at that point where I am hanging on to get AIR and in a full-blown asthma attack. Panic is so different. I have the device to measure the difference too between panic and asthma. I'm talking about straight-up asthma in this thread. For me, it's allergic asthma. I can handle perfumes and most cleaners. It's just a handful of room fragrances in the air at a certain level where I am toast. I don't ask the fragrance to stop. I ask that I do not have to go back in and I will make the adjustments to stay in another space so that I can breathe.

It's the legit straight-up OMG I CAN NOT BREATHE I AM GOING TO DIE moments with asthma compounded by humans shaming me when they put together I'm fighting to breathe because I happen to be deathly allergic to a handful (not all) of intense fragrances. I am so ashamed of this. Deeply. Beyond all reason. I get really aggressive allergy care, and there is nothing more I can do. When I was a kid, I would wish myself to not exist. Now? I exist. I wish it didn't feel like a burden on others to exist.

Does anyone deal with this or anything like it?
 
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I am so ashamed of this. Deeply. Beyond all reason.
So I understand this in two halves.
The first, feeling deep beyond-words and beyond all reason shame for a medical condition outside of our control, compounded by other people's responses and reactions that make us think we shouldn't have it, it shouldn't affect us, and the fact that it does is merely a sign of our own weakness -type of shame.
OMG I CAN NOT BREATHE I AM GOING TO DIE moments
The second from being administered high doses of CNS depressants by my abuser, that left me gasping for breath, both in public and private locations, and no help - or even neutral response - from him, but a harmful one on top of the cannot-breathe moment.

It's hard. And I can't imagine what it'd be like when they both overlap like you experience.
I wish it didn't feel like a burden on others to exist.
I understand.
But you definitely aren't a burden.
In fact, you enrich a lot of people's lives by merely existing. That's like, the opposite of a burden. :hug:
 
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OMFG! YES! (and no). Today! This very morning!. :mad: :banghead: :mad:

Part 1 (This is turning into a novel, so I’m breaking it into 2 parts, so it doesn’t sit in drafts until it auto deletes)

Let’s get the (and no) out of the way. >>> I don’t understand other people’s shame around not being able to breathe, almost as much as I don’t understand the cock juggling thunderc*nts who guilt/ shame/ bully/ harass/ sneer/ admonish/ rage at/ look down at people who can’t breathe. But more on those sterling examples of humanity later. FFS. They make me want to introduce them to water boarding since they’re clearly incapable of even the most basic stretch of the imagination. Can’t understand why NOT BREATHING is a problem, f*cktard? Lucky for you, here we go! (Later. More on them Later. Aargh. They infuriate me).

I do understand the shame is very real, painful, pervasive, and deeply tied to trauma... both because I have my own on other things... and because I have spent years now, coaxing my kid out of his.

His is probably/possibly easier to deal with, because he didn’t have any shame tied up with his asthma for the first couple years / it wasn’t built in on the ground floor. It’s not actually all that hard to understand to begin with (meaning I got it) and we were living out of the hospital surrounded by both the best doctors and nurses in the world, as well as parents and families of other sick kids. Everyone “got” it. Whether you were a pulmonary kid, or a cancer kid, or a cardiac kid, or a spectrum kid, or GI kid, or whatever. It didn’t even enter his head that this was anything to be ashamed of, and my-little-comedian made that point super clear when kids came in feeling all ashamed of whatever it was the kids ar school made fun of. Sick kids are like a little ARMY of self confidence boosters to each other. No hair? No problem. Your bestie is coding? Smack the red button, and tell them a funny story about how the last time you coded, until the crash team gets there. (There was a group of cardiac kids who had a running bet going with each other about who could stay awake the longest. Coding wasn’t something to be afraid of. It was something to make a game out of.). A colostomy bag isn’t something to hide, or to be afraid someone is going to rip out of you, or be disgusted by; it’s something to show off, because how cool is the hole in your gut? It’s like a pirate cannon balled you and you lived! Ricky has the BEST hole, guys! He’s like a super hero. Sick kids? Got each other’s backs.

It wasn’t until his dad (TheAsshole) got half custody (abusive piece of shit, in this as everything else), and then TheAsshole compounded it by strangling TheKiddo whenever he wanted him to be quiet (because hypoxia has that effect; strangle an asthmatic and they’ll sit dumb and obedient for hours unable to do anything else :shifty: No strength to think, much less fight back, nor play/laugh/be happy/live a life. So whether you want a pliant victim or to not be “bothered” by the stuff of childhood, voila merde. I could rip that man’s spine out through his chest and beat him to death with it for the things he’s done to my son).

Added onto by countless other shit for brain morons
teachers refusing to let him use his puffer, or go to the nurse, and in the same -well oxygenated- breath chastising him for not paying attention??? Hello! He can’t f*cking breathe! ... A elementary school nurse who accused him of being stoned, because of his dopey affect and red eyes, MAYBE could use an ounce of medical training as not confuse red-eye with petchial hemmorage? Or diminished breath sounds with clear? (Not all asthmatics wheeze. Some get atelectasis, as pockets and whole lobes collapse :banghead: ). Or think the steroids asthmatics use are anabolic steroids (and just because we’ve “chosen to break the law” she doesn’t have to be a part of it) instead of cortical steroids. :rolleyes: Or think an SpO2 of 74 is freaking “average” :mad: < That one the chief of pulmonary stepped in and first read her the riot act, and then the school district. Mine wasn’t the only asthma-kid in the school being denied access to their meds & competent medical care. Wanting a freaking elementary school kid charged with drug offenses & expelled because they’re refusing to let him use his inhaler? WTFO?
I think TheKiddo could have held onto his easy confidence and chutzpah dealing with kids & teachers, if he hadn’t also been having to deal with the same BS -and worse- at home. The combo of losing his peer group, adults who were supposed to be trustworthy betraying that trust, and abuse... shredded him. It’s taken 6 years of immovable object meets irresistible force (I’m nothing if not stubborn) to get him almost back to where he was pre guilt&shame-tastrophe (typhoon?) In either case, subsumed by other people’s bullshit. <<< I think this is a perfect example of the Anïas Nin quote “Shame is the lie other people have told you about yourself”. For true.

So as far as not being able to breathe being shameful? I can understand it’s real & painful, however (And no) = I reject the premise.
 
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I get a lesser version of this. I have a perfume sensitivity, the strength of which varies depending on my stress levels. Some days I can walk into a perfumed room and suffer not much more than an itchy nose and scalp. Other days I walk into the same room and within minutes I’m struggling to breathe. I never know which it’s going to be. People have mistaken that for an asthma attack. But it's one of those things people also struggle to believe is real- what do you mean you’re allergic to perfume? Even when they understand it’s real, it doesn’t translate into actual sense, like they’ll still be surprised when I tell them I have to leave a room or can’t speak to someone because I literally can’t breathe in their presence.

I was ridiculed and shamed for being ill as a child. It takes a lot for me to admit to any signs of illness. So to have people not take it seriously (even my doctors don’t take it seriously) is a thing. Mostly, it means I just minimise it until I end up standing outside in the rain, bent over, dizzy, exhausted, and gasping.
 
A colostomy bag isn’t something to hide, or to be afraid someone is going to rip out of you, or be disgusted by; it’s something to show off, because how cool is the hole in your gut? It’s like a pirate cannon balled you and you lived! Ricky has the BEST hole, guys! He’s like a super hero. Sick kids? Got each other’s backs.
Yeah. This clicks. I’ve had a couple friends with significant physical disability or chronic illness over the years that when I’ve been around them, it was like they cared but it was not only not a problem I had health problems, but something to joke about and have fun about. I ease up. I feel human. Like I can be me. I don’t have to hide or stuff it.

Yesterday, I ended up in the ER. No biggie for me. It happens. It threw off my day and was a pain, but I didn’t die and I adapted.

A friend kept calling. I eventually told sorry can’t talk now, I’m in the ER, I’ll be totally ok, all is alright, but I’ll have to get back to you later.

When I finally spoke to him, and he announced he bought the car (uh...) he asked why I was in the ER. Asthma attack from incense sticks stuck in the vent of a cab.... he was like, “Oh you are so delicate. Why didn’t you call me or (list of other friends) to pick you up from the ER?”

“I was ok. I had everything I needed.”
He was genuinely annoyed and reprimanded me not asking friends for help.

I wanted to say, “Yeah well this damn delicate flower can take care of herself thankyouverymuch.” Instead I told him thanks for offering to help.

His response, “Good thing I bought this car to fix up for you to buy!”

What?

I told him I was looking for a car, and asked for his advice on how to find one... I told him my meager budget for one... and a week later he bought a car to fix up for me to buy. Kept telling me I will cry when I see it. Uh.

I’ve got to figure out how to tell him that while I told him I had x budget for a car, I had other things come up and I decided I’m postponing the purchase and meeting with a job and financial coach first.

When I dare tell people anything about my reality fighting this... all the codependent caretaking comes out and I’m oh so weak or sensitive or delicate and they will save me from my body! And here’s what happens next: when I have to tell them actually, thanks but no thanks for the unasked for help, it’s not actually something I can do or afford or would be helpful right now but try and you again do much for caring... I then become the bad guy.

And somehow whatever I admitted about being sick or vulnerable health wise gets turned into I’m making it up, not trying hard enough, etc, etc.

Damn it. The cabbie who is genuinely a nice guy who meant no harm was all pissed. He is with a medical cabbie service and he didn’t know... I did talk to him and explain it’s ok, it happens. I spent all my heart on reassuring him.

No one was actually there for me to say, “Hey, that’s scary, you ok now?” and then to do what I really wanted which was to talk and connect and have a little fun like I do with a friend who is blind and either one of us run into humans being humans (?) about disabilities or illness...

Instead I’m reassuring everyone else and getting turned into a project because I’m oh so broken and whatever. Damn it. It doesn’t help that I’m so darn insecure about it all. I want to hide from everyone! Geez. This is why I don’t tell people I have a health problem. The cabbie was like “I didn’t see you use the epi pen.” I’m not going to tell him... Yeah dude, you were driving and I was wheezing but hiding jabbing the damn pen in my leg to keep me breathing and alive because I was scared you would scream like my father did.
 
I had another asthma attack today at the allergy clinic after an allergy shot and I didn’t even want to tell the doc. I eventually did. But still.

It feels like I’ve done something horribly wrong, but it’s a stupid side effect to the shot. That’s all.
 
It feels like I’ve done something horribly wrong, but it’s a stupid side effect to the shot. That’s all.
I am super, super allergic to flowers, floral fragrances, incense, the whole thing. I don't go into an asthma attack but I'll cough till I puke and lose my voice. I grew up that way so i learned to move myself rather than ask others to move for me.

Then I worked with a gal who smoked, but didn't like the smell. So every time she had a cigarette she doused herself in perfume. As in - you could smell it 10 minutes after she left a room. And we had another gal who grew lilies and would bring huge bouquets into work that you could smell thru the building. It wasn't just me - we had two people with asthma who were seriously struggling but were to ashamed/afraid to speak up. I was just the first one to get bitchy.

I was responsible for driving a fragrance free workplace policy and it pissed a ton of people off. But y'know what? I didn't care. My ability to breathe trumped their ability to stink. So no more scented anything at work - lotions, perfumes, sprays, you name it we banned it. Which is becoming more and more common on the west coast at least.

What's weird? The more vocal I've gotten the more accepting people are about it. I didn't expect that -- I thought I would always be defending myself. I think it's because it is a way bigger problem than people realzie -- and they have just been waiting for someone else to say ..ENOUGH. I even made my stupid sister -who should know better! throw away a bouquet she brought into my house!

I'm hoping it helps to know it's not just you fighting the battle. I know how hard it can be to get vocal about it and what it's like to feel like people are looking down on you --- but it's nothing to be ashamed of. And you might be surprised that when you speak up its a non event.....? :hug:
 
I have asthma as well. I am reactive to certain cleaners, some flowers, humidity and extreme cold. I have been wearing one of those surgical masks with the charcoal to filter my air when I need to go out in weather that starts an attack. I don't know if carrying one for emergencies would help but better to look silly than stop breathing.
 
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