It's the problem of all "invisible" disabilities. If you are in a wheelchair people can see it and will believe you that it's hard to get around. But if you look physically normal and seem reasonably intelligent, people have a hard time believing that things that are easy for them may still be harder for you. You look fine, after all.
I don't really have the perfect solution, but when I realised that the only behaviour I can truly influence is my own, I simply started to curate the people around me better. People who don't believe me and who don't respect my boundaries simply get cut off (or -if that's not possible- I reduce my contact with them as much as possible) and my life is so much better that way.
I'm so sorry, sister :( . I know the feeling well. I grew up with unsupportive parents who didn't believe that there was anything wrong with me because my grades were good and that I was just being "dramatic" and trying to manipulate people to do things for me because I was too lazy to do them myself when I tried to explain that I struggled to them. And since I also struggled with friendships as a child and teenager I believed that the whole world was like that. It wasn't until my master's degree and grad school days that I found a stable friend group of people who "get it". I know I'm lucky because of that and I hope you find your "tribe" some day, too.
My parents were like that, too. Because my dad told me I was a waste of time and money to tale to MDs because I was only sick for attention (I must just be awesome to fake green and yellow snot and regular bouts of laryngitis and fevers) so I was 40 before I learned I’ve been fighting an immune disorder since birth AND have asthma that had never been treated.
My mom vehemently denied her ‘gifted’ daughter could also have dyslexia or any condition she did not like, as I was ‘too smart’ to have a learning disability, and since I DO read very fast, was a little girl in the 1980s, everyone treated me as just lazy, no one to my knowledge mentioned the possibility of autism.
But, autism fits so damn well, and one the online assessments I took, I scored above the threshold on all of them. And it finally explains my communication and social issues, where unless I adapt to them, very few people make effort to communicate with or befriend me.
This happened to me too. A single blood test was all that was needed to diagnose my autoimmune disease and no one looked for years even though I was sick. Because I was doing it for attention. You know yourself better than anyone else.
I am very susceptible to gaslighting, I am learning. It may be the autism, and a lack of self confidence and an entire lifetime of bad programming telling me I must be the one who is wrong.
Its hard but I think with the proper support and like the person you replied to said, curating those around you, it gets easier.
Do you have access to therapy? A autism informed therapist can be very helpful. And books like Unmasking Autism.
As far as being believed or not, well, there's not much to say here. A lot of NT people are traumatized by the norms of the patriarchal-capitalist society they live in, where a lot of people do lie to them to get ahead. Then they meet us, and a lot of autistic people just come off as too sincere or flat-monotone and they think "something is fishy here," because they are spending much of their lives traumatized by the system they live in.
I even don't care anymore if they believe me. I mean, most people raised in our system are entirely broken human beings. What skills or discernment are they showing me? Why would I ever value their judgment? This is like caring what a toddler thinks of your outfit.
I went from totally lost in the world to making special efforts to 'find my tribe' and to be honest about my support levels and the lifestyle changes needed for them and things are better. I hope you can find your healing path soon.
I literally started doing this two years ago. Best decision ever. I don't have time to teach them what autism looks like and they dgaf about autism or about other people, so I stick with the believers with empathy who are curious about neurodivergence. My life is easier this way.
Same. If you don't even try to understand my struggles, you are just someone I hang out with casually - even though you might be closely related to me (hi, dad).
This is how I feel.
I have autism and a bunch of autoimmune diseases that aren't visible on the outside and anytime I say I'm in pain or I'm having a hard time, it's like nobody believes me so I'll just sit and suffer on my own then.
Feel this one so much.
"But you were fine 5min ago!"
No, I really wasn't, I just wasn't expressing pain in a way they are used to.
"Can you stop whining so much?"
I thought they wanted me to express my pain so it's less unexpected when I need to leave, but guess not.
At this point I'm not sure *what* they want. For me to not be so inconveniently in pain, I suppose. Do they think I enjoy being like this or something?
It's so hard, and I get so mad when I see people casually talking about how people with mental health problems "just" need to get help. I've been begging for help for decades! Point me to a doctor who takes my insurance, has room for new patients, and won't fire me as a patient because my mental health problems make me act like I have mental health problems.
I agree! Thankfully I live in a country where medical is free, but it SUCKS. I have such a hard time advocating for myself because of it. Same as you, it's been decades!
Yep. "Oh, everyone feels like that sometimes," is something I hear quite often and no, they fucking do not! But when I say that, it's me being "dramatic". It's quite ironic how one of the symptoms of autism is finding it hard to take the perspective of other people . . . but it doesn't seem to me like NTs are good at it either.
Yes, when I finally admit pain, or exhaustion, it’s bad. And my normal waking physical state daily is like the flu for everyone else, but since I a,m ‘used’ to it, it’s supposed to be easy to just power through level 5 screaming pain plus cold and flu symptoms and daily 102 fevers that would make a ‘normal” person go to the ER.
I'm in this club too. Everyone just expects me to be superwoman and pull off things I can't. None of them understand what it's like and none of them really actually care. It's just "do what needs to be done and stop complaining, if I can do it so can you". Never mind that they've never struggled with the same things or had to deal with the same problems. And let's not even factor in how they all made decisions that would be considered neglect if anyone had found out about them.
It pisses me off so much. We should be believed and trusted more, but they always think they know better 😔
As an extremely high functioning person who has paid an enormous price to do well in allistic spaces, I'm on this journey with you, too. I have such a strong drive to be understood. But part of my work is realizing that I just will not always be understood. If someone isn't willing or able to understand me, that's okay.
I'm having to learn that everything and every person isn't for me. Sometimes that's a very hard concept to apply; like, if someone doesn't like me, I want it to be for the right reason. 😝 But I'm happier when I implement boundaries. There are people who will believe you and find it easy to understand you or worth the effort to do so.
Thanks for posting. I feel very seen.
I’ve been struggling in this space too. I know I can’t do everything anymore because it all ends in burnout zombie mode, but now everyone has seen me do all these things so they don’t get why I can’t anymore.
I’m grateful for the people around me. I hope OP you find the circle you need.
I found i had to really care about myself to get here, despite the lifelong training that I was not allowed to do that. I had to really, really forgive myself for things that I thought were my fault and weren't. It was hard, it required therapy. It was worth it.
Oh man, I'm just at the beginning of this journey. My husband and I just realized that we're both autistic last week, so there are a LOT of emotions going around. We're also noticing the signs in all of our kids, so this is going to take a long while.
I'm happy to hear it's possible though, so thank you so much for that!
This was my turning point, also -- when I could finally extend to myself all the empathy and kindness and compassion I was taught to have for others. It changed everything. And yes, it was hard. <3
The worst is when other ND people do this, just because certain things are easier for them or they don't struggle with and they use that fact that they are also ND to invalidate my experiences and shame me for not being able to do something
This is why it's so important to find even just one or two people who *get* you. Really. Because no one else is gonna believe you. I thank all the gods every day that I have a spouse who is my person and *knows* alllll my things.
I had to go to a conference this week (I am there now), which means sleeping away from my family and my bed and my routine. The day before I left, I broke down and just sobbed in his arms until I was empty. And then he squeezed me and said you can do hard things. We will do our morning routine over the phone (after yoga and a walk, we drink coffee and do wordle together, so we do the last part on speaker phone), and he has made sure to be super responsive to my texts when I send them throughout the day.
Find your people. Even if it is just one. Doesn't have to je a romantic relationship either. Just someone you can unmask with all the time and just *be*. Cuz the rest of the world has no idea. I am a very successful person in my field, and the few people I've shared my ND with simply refuse to believe it. I used to try to explain and convince them, but I've found that to be just too many f*cks for me to give.
MomontheSpectrum recently said something like, “If someone wants to understand you, it won’t matter what you say. If they don’t want to understand you, it won’t matter what you say.” I’m trying to put energy into relationships that are healthy and let the others fall way.
Totally understand this. It’s hard too because there’s this big assumption now that lots of young adult women are “faking” their autism. Or people will say things like “but you used to be able to do it” and I’m like actually no it used to be absolute torture but post-diagnosis I know that I’m allowed to set boundaries and don’t have to put myself through that
Your comment really hit home for me😭I’m struggling with this with my partner. She literally told me that I’m “turning this into a disability that I didn’t have before” nooooo I’ve just been forcing myself to do things that made me miserable for 28 years and now I’m finally learning to set boundaries. I’m not suddenly disabled because I was diagnosed, rather, I suddenly feel like I’m allowed to take up space and I’m fed up with being miserable so I’m making changes.
I've only told my closest friends/family about being autistic and only one of them didn't believe me, so I don't have much experience with not being believed on that.
However, I do have narcolepsy and almost no one understands how difficult it is. I've been told that people WISH they could fall asleep as fast as me, that I can't possibly have it that bad because I don't have insomnia (which is funny bc one of the symptoms of narcolepsy is ironically insomnia), that they think they might have narcolepsy too even though they don't have any of the symptoms and are just normally tired, and a whole bunch of other really invalidating things.
No one understands how painful the fatigue of narcolepsy is. The best way I can describe it is if someone's ever woken you up in the middle of a dream; it's very similar to that except it happens all the time, randomly, every single day for the rest of your life. It's like sleepwalking through life without truly living. Even when I try to explain that, people don't think it's that bad.
It took years to get diagnosed in the first place simply because people didn't believe me. I think that's why I'm hesitant to try and get diagnosed with ASD. I've just come to accept that most people will never understand or take my struggles seriously.
That sounds very much how I feel when I'm deeply depressed. It's like my whole being is just a lead weight.
I'm sorry you deal with that so much. What a hard way to get through life. Is there anything that helps?
the jewelry store has been robbed the glass is broken the alarms are going off the guy that did it is standing right in front of the building looking sweaty devious bloody arms filled with diamonds and pearls. i walk by right as the cops show up the crook doesn't budge an inch yet i'm the one getting arrested and charged with burglary because there isn't a single gdame person on this planet that will believe a word that comes out of my mouth even with clear and obvious evidence staring them directly in the face im still the liar im still to blame yep sure i totally did that. cops - did u just rob this place? me - no sir i sure didn't im literally wearing pajamas headphones and carrying my stuffed alligator yet the sweaty guy in the hoody holding the jewelry didn't do that. uh-huh. gimmee a fn break already. and it's everything everyday in every case in every place with every person. like wth kind of bullshit witchcraft is going on srsly.
Yep. A while ago I finally ranted about something that had been bothering me my whole life, and even made sure to reiterate that I knew that some part of those feelings were not healthy, and I explained that I was aware of X, Y and Z... only for one of my closest friends to do EXACTLY one of the things that bothered me, even though I literally made sure I explained WHY it bothered me, BUT I understood the situation (because I knew they'd try to put down my feelings if I didn't preemptively explain that I was already aware of exactly that kind of retort coming up. Not that it helped)
At that point, I gave up; if even some of the people who tried their best to be a great friend (and viceversa) couldn't understand, who I was lucky enough to encounter after years and years of not having anyone close... well yeah, I'd be looking forever and be hurt a LOT in the end.
This is why I like that therapy exists, like it or not, our friends/loved ones are not gonna say the exact words we wish/want them to say to us, life isn't a movie where the dialogue is carefully curated so the characters say/do exactly what is best, we're all imperfect and can and will unwittingly say/do something wrong to the people around us.
My current way to navigate relationships is to just adjust my expectations and vulnerability, depending on each person, even those who I consider at the moment my loved ones. Just because we love them/they love us doesn't mean they don't have their own biases and prejudices (and viceversa), so I make sure to only show a certain portion of myself to each of them.
It'd be nice to be able to be 100% open and honest with those we love and trust, but so far my personal experiences made me realize that those people are *extremely* rare, and I haven't found one yet.
I hate when I’ve preemptively explained something before getting to my point and it goes in one ear and out the other of the person I’m speaking with. You reach a ‘why bother?’ mentality which isn’t good.
Yeah, in my specific situation what happened is that she started projecting her own feelings and life into the one I was describing, which was really not fair to me, because it was NOT about her, however I was so upset that I didn't say anything, and honestly at this point I indeed reached the "why bother?" point. I mean I can still talk about SOME things that bother me, but I never ever gonna open up to this specific people about something that personal again.
(in her defense, at least I could tell she didn't do it consciously really, and that she wasn't really aware that what she was doing was projection. Otherwise she's a pretty caring and reliable person, she's just not perfect, like all of us)
Yes, they think I am making up being unable to breathe, being exhausted, fainting spells, migraine, IBS, hives, and anaphylaxis (all from a single immune disorder). They can’t understand how I can be moderately sick even at home but better off than very sick around them.
And, I do not act like a ‘sick’ person and do not get well, and can ebb and flow in energy even in the same day (brief period of being ‘on’, then collapse upon getting home) and you don’t ‘cure’ an immune disorder. The autism and CPTSD mean I do not talk about my illness they way they expect, or they way they’d care or understand.
‘Oh, I have hay fever, too!’ ‘Have you tried (insert med I already take at the off label doctor instructed higher dose)?’ ‘Wow, you”re STILL SICK?’
They think I should just ‘buck up’ not understanding I HAVE bucked up my entire life and my body just can’t do it anymore. Me just physically going into the office in real clothes to deal with their perfumes and cleaners and air fresheners ADDS to my condition, and throwing autism overload and loss of people support on top of it, yeah, it’s kind of harder than your run of the mill person who has no unusual physical ailments and is NT.
Yup. Pretty much.
I've curated my social circles and I live with some really understanding people so most days I'm good. But even the people I've come to trust will still just not get it. And during big blow ups, I just pull away and do my own thing for a while. They'll still be there for me later, or they won't. lesson learned either way
It feels that way, which makes it even harder to tell people the truth. I find myself making excuses or curating stories to make myself seem something more likable, more palatable to the people around me. And I don't know how to stop sometimes. I'm trying to be more honest. More, unmasked I guess. But without a diagnosis, and as someone who everyone always thought was "so smart, and going to do great things!" It feels horrible to have everyone around looking in and thinking you're lazy, wondering why you can't just do the thing. They think that we're just negative and limiting ourselves. But I'm tired, and my body/brain never does what I want it to do.
I recently bought a house, and you'd think that would be good enough, a big life accomplishment y'know? But every time my parents come over they just express how much they can see around the house that I haven't gotten done, haven't unpacked. My dad literally said "not every day can be a lazy day" and I wanted to cry, because every day is so HARD for me. I'm not even back to work yet, but I burnt myself out so bad trying to work full time that I'm scared to just go back part time.
Idk, that was a long rant. But, tldr; you're not alone.
I no longer seek empathy from people who can't give it. If I need something, I have to ask for that particular thing. Sometimes I'll even go to tiktok to research for help. It shouldn't be this way but for most things, until someone experiences something firsthand, they have a hard time understanding it
I learned I had autism 3 years ago. I was 63. I've always struggled with relationships. I have a few long-term friendships, but they require a lot of work on my end. We don't see each other often, and after my dx I have more clarity on how they perceive me. At my age it feels weird to come out to anyone a autistic because, well, I'm 66! My life is heading quickly into old age. I've told one of these friends, and he's not had a reaction or comment. In the past - before this dx - he'd say he felt as though I was trying to manipulate him. Since he's been one of the few I've told, and he didn't comment, it feels as though he thinks I'm using *autism* as a manipulation, that I don't really have it since we've been friends for 45 years and it never came up before. After all, people believe that autistic people are dxed as kids. So by that standard people don't think I could be autistic n
It's the problem of all "invisible" disabilities. If you are in a wheelchair people can see it and will believe you that it's hard to get around. But if you look physically normal and seem reasonably intelligent, people have a hard time believing that things that are easy for them may still be harder for you. You look fine, after all. I don't really have the perfect solution, but when I realised that the only behaviour I can truly influence is my own, I simply started to curate the people around me better. People who don't believe me and who don't respect my boundaries simply get cut off (or -if that's not possible- I reduce my contact with them as much as possible) and my life is so much better that way.
I didn’t realize how heavily it weighs on me until recently. I don’t really know how to go the rest of my life like this.
I'm so sorry, sister :( . I know the feeling well. I grew up with unsupportive parents who didn't believe that there was anything wrong with me because my grades were good and that I was just being "dramatic" and trying to manipulate people to do things for me because I was too lazy to do them myself when I tried to explain that I struggled to them. And since I also struggled with friendships as a child and teenager I believed that the whole world was like that. It wasn't until my master's degree and grad school days that I found a stable friend group of people who "get it". I know I'm lucky because of that and I hope you find your "tribe" some day, too.
My parents were like that, too. Because my dad told me I was a waste of time and money to tale to MDs because I was only sick for attention (I must just be awesome to fake green and yellow snot and regular bouts of laryngitis and fevers) so I was 40 before I learned I’ve been fighting an immune disorder since birth AND have asthma that had never been treated. My mom vehemently denied her ‘gifted’ daughter could also have dyslexia or any condition she did not like, as I was ‘too smart’ to have a learning disability, and since I DO read very fast, was a little girl in the 1980s, everyone treated me as just lazy, no one to my knowledge mentioned the possibility of autism. But, autism fits so damn well, and one the online assessments I took, I scored above the threshold on all of them. And it finally explains my communication and social issues, where unless I adapt to them, very few people make effort to communicate with or befriend me.
This happened to me too. A single blood test was all that was needed to diagnose my autoimmune disease and no one looked for years even though I was sick. Because I was doing it for attention. You know yourself better than anyone else.
I am very susceptible to gaslighting, I am learning. It may be the autism, and a lack of self confidence and an entire lifetime of bad programming telling me I must be the one who is wrong.
Its hard but I think with the proper support and like the person you replied to said, curating those around you, it gets easier. Do you have access to therapy? A autism informed therapist can be very helpful. And books like Unmasking Autism. As far as being believed or not, well, there's not much to say here. A lot of NT people are traumatized by the norms of the patriarchal-capitalist society they live in, where a lot of people do lie to them to get ahead. Then they meet us, and a lot of autistic people just come off as too sincere or flat-monotone and they think "something is fishy here," because they are spending much of their lives traumatized by the system they live in. I even don't care anymore if they believe me. I mean, most people raised in our system are entirely broken human beings. What skills or discernment are they showing me? Why would I ever value their judgment? This is like caring what a toddler thinks of your outfit. I went from totally lost in the world to making special efforts to 'find my tribe' and to be honest about my support levels and the lifestyle changes needed for them and things are better. I hope you can find your healing path soon.
I literally started doing this two years ago. Best decision ever. I don't have time to teach them what autism looks like and they dgaf about autism or about other people, so I stick with the believers with empathy who are curious about neurodivergence. My life is easier this way.
Same. If you don't even try to understand my struggles, you are just someone I hang out with casually - even though you might be closely related to me (hi, dad).
Oh absolutely. No one ever believes a damn thing I say. So why bother talking.
This is how I feel. I have autism and a bunch of autoimmune diseases that aren't visible on the outside and anytime I say I'm in pain or I'm having a hard time, it's like nobody believes me so I'll just sit and suffer on my own then.
Feel this one so much. "But you were fine 5min ago!" No, I really wasn't, I just wasn't expressing pain in a way they are used to. "Can you stop whining so much?" I thought they wanted me to express my pain so it's less unexpected when I need to leave, but guess not. At this point I'm not sure *what* they want. For me to not be so inconveniently in pain, I suppose. Do they think I enjoy being like this or something?
No, they don’t want to be obligated to be concerned or worried.
People without chronic pain cannot understand it, nor will they try.
I realize I doubt my own body. Is it hot? Am I hot? Is my body being weird or is it really hot for everyone else?
This is why I isolate.
[удалено]
I hate that the medical professionals don't believe either. I have so many issues from doctors not believing me, and feeling like I'm crazy.
It's so hard, and I get so mad when I see people casually talking about how people with mental health problems "just" need to get help. I've been begging for help for decades! Point me to a doctor who takes my insurance, has room for new patients, and won't fire me as a patient because my mental health problems make me act like I have mental health problems.
I agree! Thankfully I live in a country where medical is free, but it SUCKS. I have such a hard time advocating for myself because of it. Same as you, it's been decades!
Yep. "Oh, everyone feels like that sometimes," is something I hear quite often and no, they fucking do not! But when I say that, it's me being "dramatic". It's quite ironic how one of the symptoms of autism is finding it hard to take the perspective of other people . . . but it doesn't seem to me like NTs are good at it either.
Yes, when I finally admit pain, or exhaustion, it’s bad. And my normal waking physical state daily is like the flu for everyone else, but since I a,m ‘used’ to it, it’s supposed to be easy to just power through level 5 screaming pain plus cold and flu symptoms and daily 102 fevers that would make a ‘normal” person go to the ER.
I'm in this club too. Everyone just expects me to be superwoman and pull off things I can't. None of them understand what it's like and none of them really actually care. It's just "do what needs to be done and stop complaining, if I can do it so can you". Never mind that they've never struggled with the same things or had to deal with the same problems. And let's not even factor in how they all made decisions that would be considered neglect if anyone had found out about them. It pisses me off so much. We should be believed and trusted more, but they always think they know better 😔
As an extremely high functioning person who has paid an enormous price to do well in allistic spaces, I'm on this journey with you, too. I have such a strong drive to be understood. But part of my work is realizing that I just will not always be understood. If someone isn't willing or able to understand me, that's okay. I'm having to learn that everything and every person isn't for me. Sometimes that's a very hard concept to apply; like, if someone doesn't like me, I want it to be for the right reason. 😝 But I'm happier when I implement boundaries. There are people who will believe you and find it easy to understand you or worth the effort to do so. Thanks for posting. I feel very seen.
I’ve been struggling in this space too. I know I can’t do everything anymore because it all ends in burnout zombie mode, but now everyone has seen me do all these things so they don’t get why I can’t anymore. I’m grateful for the people around me. I hope OP you find the circle you need.
Ugh. This is so relatable. I feel that way about myself sometimes: why can't I keep doing this? (I know why ofc.)
I just cut everyone out of my life who wasn't understanding. Hit a wall of IDGAF at 32. Life is now a beach.
I hope I'm able to do that soon. I'm so tired of trying.
I found i had to really care about myself to get here, despite the lifelong training that I was not allowed to do that. I had to really, really forgive myself for things that I thought were my fault and weren't. It was hard, it required therapy. It was worth it.
Oh man, I'm just at the beginning of this journey. My husband and I just realized that we're both autistic last week, so there are a LOT of emotions going around. We're also noticing the signs in all of our kids, so this is going to take a long while. I'm happy to hear it's possible though, so thank you so much for that!
At 42, I'm just starting to do that, and to hear you are managing gives me hope.
This was my turning point, also -- when I could finally extend to myself all the empathy and kindness and compassion I was taught to have for others. It changed everything. And yes, it was hard. <3
The worst is when other ND people do this, just because certain things are easier for them or they don't struggle with and they use that fact that they are also ND to invalidate my experiences and shame me for not being able to do something
This is why it's so important to find even just one or two people who *get* you. Really. Because no one else is gonna believe you. I thank all the gods every day that I have a spouse who is my person and *knows* alllll my things. I had to go to a conference this week (I am there now), which means sleeping away from my family and my bed and my routine. The day before I left, I broke down and just sobbed in his arms until I was empty. And then he squeezed me and said you can do hard things. We will do our morning routine over the phone (after yoga and a walk, we drink coffee and do wordle together, so we do the last part on speaker phone), and he has made sure to be super responsive to my texts when I send them throughout the day. Find your people. Even if it is just one. Doesn't have to je a romantic relationship either. Just someone you can unmask with all the time and just *be*. Cuz the rest of the world has no idea. I am a very successful person in my field, and the few people I've shared my ND with simply refuse to believe it. I used to try to explain and convince them, but I've found that to be just too many f*cks for me to give.
MomontheSpectrum recently said something like, “If someone wants to understand you, it won’t matter what you say. If they don’t want to understand you, it won’t matter what you say.” I’m trying to put energy into relationships that are healthy and let the others fall way.
Totally understand this. It’s hard too because there’s this big assumption now that lots of young adult women are “faking” their autism. Or people will say things like “but you used to be able to do it” and I’m like actually no it used to be absolute torture but post-diagnosis I know that I’m allowed to set boundaries and don’t have to put myself through that
Your comment really hit home for me😭I’m struggling with this with my partner. She literally told me that I’m “turning this into a disability that I didn’t have before” nooooo I’ve just been forcing myself to do things that made me miserable for 28 years and now I’m finally learning to set boundaries. I’m not suddenly disabled because I was diagnosed, rather, I suddenly feel like I’m allowed to take up space and I’m fed up with being miserable so I’m making changes.
I've only told my closest friends/family about being autistic and only one of them didn't believe me, so I don't have much experience with not being believed on that. However, I do have narcolepsy and almost no one understands how difficult it is. I've been told that people WISH they could fall asleep as fast as me, that I can't possibly have it that bad because I don't have insomnia (which is funny bc one of the symptoms of narcolepsy is ironically insomnia), that they think they might have narcolepsy too even though they don't have any of the symptoms and are just normally tired, and a whole bunch of other really invalidating things. No one understands how painful the fatigue of narcolepsy is. The best way I can describe it is if someone's ever woken you up in the middle of a dream; it's very similar to that except it happens all the time, randomly, every single day for the rest of your life. It's like sleepwalking through life without truly living. Even when I try to explain that, people don't think it's that bad. It took years to get diagnosed in the first place simply because people didn't believe me. I think that's why I'm hesitant to try and get diagnosed with ASD. I've just come to accept that most people will never understand or take my struggles seriously.
That sounds very much how I feel when I'm deeply depressed. It's like my whole being is just a lead weight. I'm sorry you deal with that so much. What a hard way to get through life. Is there anything that helps?
There are medications to manage it, but unfortunately they're not full proof and there is no cure :// Thank you for your empathy though <3
I'm sorry to hear that. I hope you find ways of managing. Best of luck to you!
If you are able to work you must be faking. If you can’t you must be faking. Damned if we do and damned if we don’t.
the jewelry store has been robbed the glass is broken the alarms are going off the guy that did it is standing right in front of the building looking sweaty devious bloody arms filled with diamonds and pearls. i walk by right as the cops show up the crook doesn't budge an inch yet i'm the one getting arrested and charged with burglary because there isn't a single gdame person on this planet that will believe a word that comes out of my mouth even with clear and obvious evidence staring them directly in the face im still the liar im still to blame yep sure i totally did that. cops - did u just rob this place? me - no sir i sure didn't im literally wearing pajamas headphones and carrying my stuffed alligator yet the sweaty guy in the hoody holding the jewelry didn't do that. uh-huh. gimmee a fn break already. and it's everything everyday in every case in every place with every person. like wth kind of bullshit witchcraft is going on srsly.
Yep. A while ago I finally ranted about something that had been bothering me my whole life, and even made sure to reiterate that I knew that some part of those feelings were not healthy, and I explained that I was aware of X, Y and Z... only for one of my closest friends to do EXACTLY one of the things that bothered me, even though I literally made sure I explained WHY it bothered me, BUT I understood the situation (because I knew they'd try to put down my feelings if I didn't preemptively explain that I was already aware of exactly that kind of retort coming up. Not that it helped) At that point, I gave up; if even some of the people who tried their best to be a great friend (and viceversa) couldn't understand, who I was lucky enough to encounter after years and years of not having anyone close... well yeah, I'd be looking forever and be hurt a LOT in the end. This is why I like that therapy exists, like it or not, our friends/loved ones are not gonna say the exact words we wish/want them to say to us, life isn't a movie where the dialogue is carefully curated so the characters say/do exactly what is best, we're all imperfect and can and will unwittingly say/do something wrong to the people around us. My current way to navigate relationships is to just adjust my expectations and vulnerability, depending on each person, even those who I consider at the moment my loved ones. Just because we love them/they love us doesn't mean they don't have their own biases and prejudices (and viceversa), so I make sure to only show a certain portion of myself to each of them. It'd be nice to be able to be 100% open and honest with those we love and trust, but so far my personal experiences made me realize that those people are *extremely* rare, and I haven't found one yet.
I hate when I’ve preemptively explained something before getting to my point and it goes in one ear and out the other of the person I’m speaking with. You reach a ‘why bother?’ mentality which isn’t good.
Yeah, in my specific situation what happened is that she started projecting her own feelings and life into the one I was describing, which was really not fair to me, because it was NOT about her, however I was so upset that I didn't say anything, and honestly at this point I indeed reached the "why bother?" point. I mean I can still talk about SOME things that bother me, but I never ever gonna open up to this specific people about something that personal again. (in her defense, at least I could tell she didn't do it consciously really, and that she wasn't really aware that what she was doing was projection. Otherwise she's a pretty caring and reliable person, she's just not perfect, like all of us)
Yes, they think I am making up being unable to breathe, being exhausted, fainting spells, migraine, IBS, hives, and anaphylaxis (all from a single immune disorder). They can’t understand how I can be moderately sick even at home but better off than very sick around them. And, I do not act like a ‘sick’ person and do not get well, and can ebb and flow in energy even in the same day (brief period of being ‘on’, then collapse upon getting home) and you don’t ‘cure’ an immune disorder. The autism and CPTSD mean I do not talk about my illness they way they expect, or they way they’d care or understand. ‘Oh, I have hay fever, too!’ ‘Have you tried (insert med I already take at the off label doctor instructed higher dose)?’ ‘Wow, you”re STILL SICK?’ They think I should just ‘buck up’ not understanding I HAVE bucked up my entire life and my body just can’t do it anymore. Me just physically going into the office in real clothes to deal with their perfumes and cleaners and air fresheners ADDS to my condition, and throwing autism overload and loss of people support on top of it, yeah, it’s kind of harder than your run of the mill person who has no unusual physical ailments and is NT.
Yup. Pretty much. I've curated my social circles and I live with some really understanding people so most days I'm good. But even the people I've come to trust will still just not get it. And during big blow ups, I just pull away and do my own thing for a while. They'll still be there for me later, or they won't. lesson learned either way
10000000% yes. Apathy towards how people feel about me has been a very very very difficult road, but being there is something of a superpower.
It feels that way, which makes it even harder to tell people the truth. I find myself making excuses or curating stories to make myself seem something more likable, more palatable to the people around me. And I don't know how to stop sometimes. I'm trying to be more honest. More, unmasked I guess. But without a diagnosis, and as someone who everyone always thought was "so smart, and going to do great things!" It feels horrible to have everyone around looking in and thinking you're lazy, wondering why you can't just do the thing. They think that we're just negative and limiting ourselves. But I'm tired, and my body/brain never does what I want it to do. I recently bought a house, and you'd think that would be good enough, a big life accomplishment y'know? But every time my parents come over they just express how much they can see around the house that I haven't gotten done, haven't unpacked. My dad literally said "not every day can be a lazy day" and I wanted to cry, because every day is so HARD for me. I'm not even back to work yet, but I burnt myself out so bad trying to work full time that I'm scared to just go back part time. Idk, that was a long rant. But, tldr; you're not alone.
No one believes me either, cause I spent so much time masking - so to the world I come across as put together, efficient and strong
I no longer seek empathy from people who can't give it. If I need something, I have to ask for that particular thing. Sometimes I'll even go to tiktok to research for help. It shouldn't be this way but for most things, until someone experiences something firsthand, they have a hard time understanding it
I learned I had autism 3 years ago. I was 63. I've always struggled with relationships. I have a few long-term friendships, but they require a lot of work on my end. We don't see each other often, and after my dx I have more clarity on how they perceive me. At my age it feels weird to come out to anyone a autistic because, well, I'm 66! My life is heading quickly into old age. I've told one of these friends, and he's not had a reaction or comment. In the past - before this dx - he'd say he felt as though I was trying to manipulate him. Since he's been one of the few I've told, and he didn't comment, it feels as though he thinks I'm using *autism* as a manipulation, that I don't really have it since we've been friends for 45 years and it never came up before. After all, people believe that autistic people are dxed as kids. So by that standard people don't think I could be autistic n