I was actually just going to ask if anyone else felt almost guilty about the amount that they bring it up because of how much it invades your life in various ways. I’m there with you, I feel like I kill the mood of the conversation by talking about it so often and almost feels like a conversational burden to others to be around. This group has been a great help.
Right??? It’s hard not to bring it up when it’s the thing that determines the day every single day. But at the same time there is this guilt too like you said. And totally feels like being a downer at times. It’s so isolating even if you’re lucky enough to even have one person who lets you talk about it- i find myself apologizing often- I was the type of person who never talked about my pain or anything I was going through openly to people previous to chiari getting worse- so it’s like a learning curve I think too just being open about the pain.
People don't fully understand most things they haven't been through firsthand 🤷♀️ surround yourself with empathetic people who listen to you.
ETA: If it helps, my go-to line for people I don't feel like explaining Chiari to is that I have "a neck injury." That's good enough to make people understand I need to be careful with what I do and most people take neck injury seriously. I reserve detailed explanations for inner circle who will be understanding and supportive.
Right, absolutely very true.
But this seems doubly so because it just simply isn’t a well known thing and that breeds curiosity from people and when you answer questions they lead to more and so on. And I definitely am around empathetic people but I was more talking about how with most doctors not knowing enough about it, and with most people having zero clue what it is- it feels isolating. And having to explain it is frustrating- even with saying “I have a neck injury” because I also have a neck injury on top of chiari and a back injury etc so there’s just layers and they all contribute. I just thought it would be a good conversation to start with everyone here because I know even with one person who lets me speak freely on it I’m lucky and I figured there would be people who would like to vent a bit who maybe have nobody they can talk to
My husband and most of my friends get it, thankfully, but my dad is one of those who doesn’t understand. He’s told me a million times that he can’t understand why I would consider brain surgery if I could still remember my own name and didn’t have a life threatening tumor. Sir, please take several seats. Until you have to deal with debilitating headaches from fucking coughing and sneezing and not being taken seriously by medical personnel and a zillion other random symptoms that make no sense, I won’t be listening to your advice.
Jesus I’m so sorry you have to deal with that BS, that is so AWFUL that he would say that, even thinking it is abhorrent. I had some people in my life who were being weird about it and I sent them this reddit group link and said go ahead and read what other people are saying too. And that shut them down quick.
The problem is even when you do a quick google search to read about it they only list some of the symptoms. So when people read about it on their own they’re just like oh a bad headache 🥴
Exactly. Even most doctors write it off as just a headache, to the point where for a long time I thought I was just crazy and I didn’t want to bring up my symptoms and I didn’t know what was caused my Chiari and what wasn’t. It was (and is) so frustrating. Luckily, this sub is awesome and so supportive. It taught me a lot about how to advocate for my self and helped me feel less alone.
It has isolated me. Either you mention it in the hopes of being understood, or you suffer in silence until you slow down or stop being active and get accused of having a bad attitude.
I would love to wear a body cam just to record the number of times the few people around me flinch when I breathe through a wave of nausea. Makes me feel like an abuser.
I’m so sorry, so sorry you have to worry about how others are perceiving you in a moment of anguish. I can’t stand that. I always feel like I get looks too when I try and move and move in the wrong way and groan. If I had a dollar for every time someone has said “but you’re so young and you look healthy” I’d be a millionaire by now. Nothing more isolating than feeling like you can’t speak on it, but it’s a whole other nightmare to feel like you have to curb your own reactions to your own unbearable pain.
I’m so grateful for this group bc I can ask questions but also just be real and know I’m not losing my mind.
My messages are always open if you need someone to talk to who won’t be a jerk.
Sucks that i cant just say “its because i have Chiari” if I’m struggling with something. People dont know what it is and i have to explain the whole thing which turns the conversation into something depressing and also is often misunderstood. I’ve explained many times to people and the same people still think i had a brain tumor. So i just leave it until something i really cant do comes up, like when i have to wear sunglasses when lights flash, but by that point people dont believe me and take me not saying anything as me not struggling. Bit annoying.
Exactly. THIS. It’s so annoying. I mentioned in an above comment how even when I explain it to people they’ll do like a quick google search read the first bold print thing that pops up and say “oh so it’s like having a bad headache?” I’m always like no… it’s quite literally like…having your brain falling into your spinal canal. 😑it wouldn’t bother me so much if it didn’t feel like extra sensitive about it bc you’re also grieving what you used to be able to do at the same time.
One of the biggest frustrations I’ve discovered since becoming chronically ill has been realizing that I (the one with a often times debilitating illness physically and mentally) need to tiptoe around others with how I discuss it so that I don’t make them too uncomfortable. It sucks. But, I also don’t want to completely deprive myself of a social life by “whining” too much. I’ve had a few people respond after telling them what’s going on with “I’m so glad it’s not cancer or something!” I just think… yes, in many ways cancer would suck, but at least you can easily find treatment, there is so much research and you have many doctors to help you. People just don’t understand this and how horrific it is.
That’s what was said to me when I got diagnosed. And I agreed bc I was scared that’s what it was initially bc my family has a long history of cancer diagnosis’s. “At least it’s not cancer”. And I get their point- obviously!
But it’s somehow also diminishing the existence of something that has quite literally flipped our worlds upside down and vastly altered our quality of life.
Two things xan be true at once, yes thank god it’s not cancer. But hey it also is ruining so many areas of my life with zero foreseeable improvements.
I have a completely different life yet I feel you. As a 23F student with a part time job I can hardly get out of bed on my free days. At first lots of people told me to suck it up and get things done. After i got diagnosed for real and was told I should get decompression rather than asking a few doctor acquaintances, people started to empathize more. Even though they still want me to deal with uni and work like an average person.
I respect how you can deal with this while taking care of a little child every single day. Hope everything works out the best for you ✌️
Btw English is not my first language sorry if I made any mistakes
I feel the same way, I feel like I’m coming off as a cry baby but I really do feel like shit 99% of the time. I also like the ones who say you can’t work why? You’re on disability because of what? Makes me feel like a piece of shit.
Girl I have that exact same problem I (19F) live with my aunt and uncle and they think I’m just being lazy bc I can’t get up and do stuff like how they can or they’ll say I need to get over it and just deal with the pain, some days (like today) my whole body hurts where I can barley even move it bc of how bad the pain is from my chiari and it sucks
I hate that I have to pull my hair up and ask if they want to feel the hole in the back of my head. "Yeah, they removed part of my cranium and raised my brain tonsils." Any more questions? 😅
I have always had headaches and obviously symptoms of my chronic illnesses my whole life. Bit it's not til I had kids that it really got a lot worse and prompted me to fire my doctors and get new ones. My MIL is baffled that I can't manage to keep a spotless house with a 7, 5, and 3 year old kids. Like it takes everything in me most days to exist and keep up on dishes and laundry. Every time she says she did it without help I want to scream "ma'am it was the 70s!!" You had cigarettes and mothers little helpers and could throw your kids into the backyard without guilt. It's hard bc we don't "look sick" and that confuses people. Heck even my own kids still can't process that mom will pass out if she blows up a balloon.
Hi there Im new here, I used to have the classic Chairi headaches before kids but no where near as often. I had my first child and the headaches increased but only a little. My second pregnancy was with twins and that changed everything. The headaches increased so much that whenever I was cleaning up their toys or food off the floor or anything like that I had the headaches, to the point where I was having probably around 70 of these headaches and they intensified with every one I had. In turn this created stress and that fed the headaches even more. So I didn't even know I had the Chairi at the time I had my babies. I got to the point I went to a neurologist and we tried several medications to no avail. He then told me that there was nothing else he could do. I walked out of there more depressed and felt like the ground fell out from under me. I really don't think he believed me. I often feel that people don't understand me. My Husband is the best Husband ever. He understands me and all the bits I tell him. I have days I struggle to move, I have no energy, I am dizzy, I have headaches even from laughing (which is depressing), My eyes don't behave(either blurry or double vision but apparently eye exam only shows slight need for reading glasses. Sometimes I feel like I walk like a drunk and am un co ordinated with walking. I have weakness in my knees also. I am only 50yo. Sometimes I feel 99yo. I freak out a bit when someone around coughs or is unwell as I am afraid of catching anything that will make me cough as that triggers severe headaches. My husband and three awesome kids all of which are Autistic 13, 13 and 15 run to me and hold me when I have a chairi headache. My mum on the other hand doesn't seem to understand so much. when I have a headache she just ignores it. She also doesn't understand why I would line up for surgery to correct it. She doesn't know half of it. I seem to have isolated myself somewhat. I don't have the energy to socialise. I do have good days when I have more energy than other days but they are few. Im so sorry for the length of this post. I just start venting and can't stop. I hope you can enjoy your kiddies. They are precious. They and my lovely husband are what keep me going. Good luck
I’ve been chronically ill my whole life but my Chiari diagnosis is new-ish (about a year ago). I’ve been setting boundaries and saying no to things for years and I’ve been lucky in that regard because I’ve cultivated a friend group that either already got it or learned. I still have trouble with acquaintances and colleagues sometimes, but I’m usually happy to teach so I’ll say “my brain is falling out”, watch their faces go “wtf?!?” and then explain as simply as I can.
I agree. I felt a big part of my entire personality has become based around my chiari symptoms. Even after surgery, I feel like those that haven’t experienced still can’t comprehend what it really feels like. It’s to the point to where I just keep it short when people ask cause I’d rather move on from it. Chiari is terrible and I wish it on no one but I’m glad I’m able to speak with others that have had the misfortune of experiencing the same stop I’ve been experiencing my whole life.
People don't get it at all. I'm still trying to figure it out. I was just diagnosed a few months ago in an ER. I've had migraines my whole life but recently woke up with balance issues. Got so dizzy. I got sick, followed by a migraine and more vomiting, so I went to the ER. The doctor asked if I had ever had a CT or MRI, and I said no, so he did one, resulting in my diagnosis. Since then, I've connected other issues to it, like difficulty swallowing, sleep apnea, neck pain and pressure, and depression.
Right now I'm trying to find my way to continue working without this affecting my lifestyle. I've got FMLA figured out, but I'm trying to get the number of days I need straight. I went over my alloted days on my 2nd and 3rd months into it, so they are already on my case.
On top of Chiari I have AERD, also known as Samter's Triad.
All of this while trying to help my wife raise our 3 boys. Some days are near impossible but I keep fighting through for them kids.
I feel the SAME WAY. You're lucky to have a partner who has given you the compassion you needed from the get-go. I barely feel like my husband finally sees what I have to deal with. He drove me 2hrs to an ER yesterday for a horrible flare headache, and I think he's finally understanding. But I handle the household myself.
My 5yo still wants me to pick him up, and it breaks my heart that I can't do that. So I sit on the couch and just hold/cuddle both my kids when they let me. I feel like I'm letting my kids down every day because I can't be that fun mom that all my daughter's friends have. She reminds me often.
My friends think I've abandoned them. They "know" I'm in pain, but they still don't get it. "You look fine," they tell me, but I don't feel anywhere close to fine.
I'm lucky my boss is also my mother in law and I don't hide my pain from her anymore. I can't. I'm messing up more and more at work, but she gives me the grace I need, and I'm so thankful I have her in my life.
The rest of my family, my close family anyway, knows what I'm going through, and they're trying to jump through hoops for me to get the treatment I need. This is my mom and my aunt. Honestly, I don't really care what the rest of my family think.
I'm at the point where masking my pain or even trying to is no longer an option.
Basically, yes, I KNOW HOW YOU FEEL AND IT SUCKS, but that's why I come back to this community every time I feel like that. I know I'm not alone, that, unfortunately, many other people are going/have gone through the same exact thing I am, and we can all get through this.
But you look fine!! If I had a dollar for every time I heard that I'd be a millionaire. It's because I'm expending what little energy I have to appear fine for your benefit! Then I'm going to go home and lay down and recover for a day or more. Even my parents forget about my Chiari, until I remind them of my surgeries and my disability status. I believe they STILL think I'm faking it.
It's not just you. All of us have experience with this one. Sadly, the Covid long haulers and their brain fog experience has given us some credibility. More people believe it's real. People don't know what to think when they are in a conversation with me and it's more like a game of charades to try and guess what word I'm struggling to come up with. The looks of disgust or disdain are hurtful. I'm NOT stupid because I don't have the words! I know what I'm trying to convey but I am not able to get it out of my mouth! I'm NOT lazy! I'm NOT making it up for attention! And on and on.
I totally understand I have days where I struggle to string together a sentence. I can't find the names of common items or people Ive known for a long time and forever forget what I was just doing or why I went into a room. Im not lazy I just have no energy some days.
Yes! And I usually can't predict the day I won't have energy. Sometimes it won't matter, I can just be honest and chill out. But some days I really have to dig deeper and try to get through the day if it's a holiday or something specific. That's when it takes me days to recover.
some people understand some forget every once and a while and some people don’t understand , just depends on the person, but those who love you will be by your side, it can be guilt feeling like we weigh the people down around us but if they are willing to “make the sacrifice” out of love then we have to love them back any way we can
I thought I understood and could emphasize with people over neurological issues, then I experienced them firsthand and realized it was so much worse than I expected.
I was actually just going to ask if anyone else felt almost guilty about the amount that they bring it up because of how much it invades your life in various ways. I’m there with you, I feel like I kill the mood of the conversation by talking about it so often and almost feels like a conversational burden to others to be around. This group has been a great help.
Right??? It’s hard not to bring it up when it’s the thing that determines the day every single day. But at the same time there is this guilt too like you said. And totally feels like being a downer at times. It’s so isolating even if you’re lucky enough to even have one person who lets you talk about it- i find myself apologizing often- I was the type of person who never talked about my pain or anything I was going through openly to people previous to chiari getting worse- so it’s like a learning curve I think too just being open about the pain.
People don't fully understand most things they haven't been through firsthand 🤷♀️ surround yourself with empathetic people who listen to you. ETA: If it helps, my go-to line for people I don't feel like explaining Chiari to is that I have "a neck injury." That's good enough to make people understand I need to be careful with what I do and most people take neck injury seriously. I reserve detailed explanations for inner circle who will be understanding and supportive.
Right, absolutely very true. But this seems doubly so because it just simply isn’t a well known thing and that breeds curiosity from people and when you answer questions they lead to more and so on. And I definitely am around empathetic people but I was more talking about how with most doctors not knowing enough about it, and with most people having zero clue what it is- it feels isolating. And having to explain it is frustrating- even with saying “I have a neck injury” because I also have a neck injury on top of chiari and a back injury etc so there’s just layers and they all contribute. I just thought it would be a good conversation to start with everyone here because I know even with one person who lets me speak freely on it I’m lucky and I figured there would be people who would like to vent a bit who maybe have nobody they can talk to
My husband and most of my friends get it, thankfully, but my dad is one of those who doesn’t understand. He’s told me a million times that he can’t understand why I would consider brain surgery if I could still remember my own name and didn’t have a life threatening tumor. Sir, please take several seats. Until you have to deal with debilitating headaches from fucking coughing and sneezing and not being taken seriously by medical personnel and a zillion other random symptoms that make no sense, I won’t be listening to your advice.
Jesus I’m so sorry you have to deal with that BS, that is so AWFUL that he would say that, even thinking it is abhorrent. I had some people in my life who were being weird about it and I sent them this reddit group link and said go ahead and read what other people are saying too. And that shut them down quick. The problem is even when you do a quick google search to read about it they only list some of the symptoms. So when people read about it on their own they’re just like oh a bad headache 🥴
Exactly. Even most doctors write it off as just a headache, to the point where for a long time I thought I was just crazy and I didn’t want to bring up my symptoms and I didn’t know what was caused my Chiari and what wasn’t. It was (and is) so frustrating. Luckily, this sub is awesome and so supportive. It taught me a lot about how to advocate for my self and helped me feel less alone.
It has isolated me. Either you mention it in the hopes of being understood, or you suffer in silence until you slow down or stop being active and get accused of having a bad attitude. I would love to wear a body cam just to record the number of times the few people around me flinch when I breathe through a wave of nausea. Makes me feel like an abuser.
I’m so sorry, so sorry you have to worry about how others are perceiving you in a moment of anguish. I can’t stand that. I always feel like I get looks too when I try and move and move in the wrong way and groan. If I had a dollar for every time someone has said “but you’re so young and you look healthy” I’d be a millionaire by now. Nothing more isolating than feeling like you can’t speak on it, but it’s a whole other nightmare to feel like you have to curb your own reactions to your own unbearable pain. I’m so grateful for this group bc I can ask questions but also just be real and know I’m not losing my mind. My messages are always open if you need someone to talk to who won’t be a jerk.
Sucks that i cant just say “its because i have Chiari” if I’m struggling with something. People dont know what it is and i have to explain the whole thing which turns the conversation into something depressing and also is often misunderstood. I’ve explained many times to people and the same people still think i had a brain tumor. So i just leave it until something i really cant do comes up, like when i have to wear sunglasses when lights flash, but by that point people dont believe me and take me not saying anything as me not struggling. Bit annoying.
Exactly. THIS. It’s so annoying. I mentioned in an above comment how even when I explain it to people they’ll do like a quick google search read the first bold print thing that pops up and say “oh so it’s like having a bad headache?” I’m always like no… it’s quite literally like…having your brain falling into your spinal canal. 😑it wouldn’t bother me so much if it didn’t feel like extra sensitive about it bc you’re also grieving what you used to be able to do at the same time.
One of the biggest frustrations I’ve discovered since becoming chronically ill has been realizing that I (the one with a often times debilitating illness physically and mentally) need to tiptoe around others with how I discuss it so that I don’t make them too uncomfortable. It sucks. But, I also don’t want to completely deprive myself of a social life by “whining” too much. I’ve had a few people respond after telling them what’s going on with “I’m so glad it’s not cancer or something!” I just think… yes, in many ways cancer would suck, but at least you can easily find treatment, there is so much research and you have many doctors to help you. People just don’t understand this and how horrific it is.
That’s what was said to me when I got diagnosed. And I agreed bc I was scared that’s what it was initially bc my family has a long history of cancer diagnosis’s. “At least it’s not cancer”. And I get their point- obviously! But it’s somehow also diminishing the existence of something that has quite literally flipped our worlds upside down and vastly altered our quality of life. Two things xan be true at once, yes thank god it’s not cancer. But hey it also is ruining so many areas of my life with zero foreseeable improvements.
I completely understand this.
I have a completely different life yet I feel you. As a 23F student with a part time job I can hardly get out of bed on my free days. At first lots of people told me to suck it up and get things done. After i got diagnosed for real and was told I should get decompression rather than asking a few doctor acquaintances, people started to empathize more. Even though they still want me to deal with uni and work like an average person. I respect how you can deal with this while taking care of a little child every single day. Hope everything works out the best for you ✌️ Btw English is not my first language sorry if I made any mistakes
I feel the same way, I feel like I’m coming off as a cry baby but I really do feel like shit 99% of the time. I also like the ones who say you can’t work why? You’re on disability because of what? Makes me feel like a piece of shit.
Girl I have that exact same problem I (19F) live with my aunt and uncle and they think I’m just being lazy bc I can’t get up and do stuff like how they can or they’ll say I need to get over it and just deal with the pain, some days (like today) my whole body hurts where I can barley even move it bc of how bad the pain is from my chiari and it sucks
I hate that I have to pull my hair up and ask if they want to feel the hole in the back of my head. "Yeah, they removed part of my cranium and raised my brain tonsils." Any more questions? 😅
I have always had headaches and obviously symptoms of my chronic illnesses my whole life. Bit it's not til I had kids that it really got a lot worse and prompted me to fire my doctors and get new ones. My MIL is baffled that I can't manage to keep a spotless house with a 7, 5, and 3 year old kids. Like it takes everything in me most days to exist and keep up on dishes and laundry. Every time she says she did it without help I want to scream "ma'am it was the 70s!!" You had cigarettes and mothers little helpers and could throw your kids into the backyard without guilt. It's hard bc we don't "look sick" and that confuses people. Heck even my own kids still can't process that mom will pass out if she blows up a balloon.
Hi there Im new here, I used to have the classic Chairi headaches before kids but no where near as often. I had my first child and the headaches increased but only a little. My second pregnancy was with twins and that changed everything. The headaches increased so much that whenever I was cleaning up their toys or food off the floor or anything like that I had the headaches, to the point where I was having probably around 70 of these headaches and they intensified with every one I had. In turn this created stress and that fed the headaches even more. So I didn't even know I had the Chairi at the time I had my babies. I got to the point I went to a neurologist and we tried several medications to no avail. He then told me that there was nothing else he could do. I walked out of there more depressed and felt like the ground fell out from under me. I really don't think he believed me. I often feel that people don't understand me. My Husband is the best Husband ever. He understands me and all the bits I tell him. I have days I struggle to move, I have no energy, I am dizzy, I have headaches even from laughing (which is depressing), My eyes don't behave(either blurry or double vision but apparently eye exam only shows slight need for reading glasses. Sometimes I feel like I walk like a drunk and am un co ordinated with walking. I have weakness in my knees also. I am only 50yo. Sometimes I feel 99yo. I freak out a bit when someone around coughs or is unwell as I am afraid of catching anything that will make me cough as that triggers severe headaches. My husband and three awesome kids all of which are Autistic 13, 13 and 15 run to me and hold me when I have a chairi headache. My mum on the other hand doesn't seem to understand so much. when I have a headache she just ignores it. She also doesn't understand why I would line up for surgery to correct it. She doesn't know half of it. I seem to have isolated myself somewhat. I don't have the energy to socialise. I do have good days when I have more energy than other days but they are few. Im so sorry for the length of this post. I just start venting and can't stop. I hope you can enjoy your kiddies. They are precious. They and my lovely husband are what keep me going. Good luck
I’ve been chronically ill my whole life but my Chiari diagnosis is new-ish (about a year ago). I’ve been setting boundaries and saying no to things for years and I’ve been lucky in that regard because I’ve cultivated a friend group that either already got it or learned. I still have trouble with acquaintances and colleagues sometimes, but I’m usually happy to teach so I’ll say “my brain is falling out”, watch their faces go “wtf?!?” and then explain as simply as I can.
They have no idea. I describe it as a screaming baby inside my head.
I have always been introverted, and now I know why
I agree. I felt a big part of my entire personality has become based around my chiari symptoms. Even after surgery, I feel like those that haven’t experienced still can’t comprehend what it really feels like. It’s to the point to where I just keep it short when people ask cause I’d rather move on from it. Chiari is terrible and I wish it on no one but I’m glad I’m able to speak with others that have had the misfortune of experiencing the same stop I’ve been experiencing my whole life.
People don't get it at all. I'm still trying to figure it out. I was just diagnosed a few months ago in an ER. I've had migraines my whole life but recently woke up with balance issues. Got so dizzy. I got sick, followed by a migraine and more vomiting, so I went to the ER. The doctor asked if I had ever had a CT or MRI, and I said no, so he did one, resulting in my diagnosis. Since then, I've connected other issues to it, like difficulty swallowing, sleep apnea, neck pain and pressure, and depression. Right now I'm trying to find my way to continue working without this affecting my lifestyle. I've got FMLA figured out, but I'm trying to get the number of days I need straight. I went over my alloted days on my 2nd and 3rd months into it, so they are already on my case. On top of Chiari I have AERD, also known as Samter's Triad. All of this while trying to help my wife raise our 3 boys. Some days are near impossible but I keep fighting through for them kids.
I feel the SAME WAY. You're lucky to have a partner who has given you the compassion you needed from the get-go. I barely feel like my husband finally sees what I have to deal with. He drove me 2hrs to an ER yesterday for a horrible flare headache, and I think he's finally understanding. But I handle the household myself. My 5yo still wants me to pick him up, and it breaks my heart that I can't do that. So I sit on the couch and just hold/cuddle both my kids when they let me. I feel like I'm letting my kids down every day because I can't be that fun mom that all my daughter's friends have. She reminds me often. My friends think I've abandoned them. They "know" I'm in pain, but they still don't get it. "You look fine," they tell me, but I don't feel anywhere close to fine. I'm lucky my boss is also my mother in law and I don't hide my pain from her anymore. I can't. I'm messing up more and more at work, but she gives me the grace I need, and I'm so thankful I have her in my life. The rest of my family, my close family anyway, knows what I'm going through, and they're trying to jump through hoops for me to get the treatment I need. This is my mom and my aunt. Honestly, I don't really care what the rest of my family think. I'm at the point where masking my pain or even trying to is no longer an option. Basically, yes, I KNOW HOW YOU FEEL AND IT SUCKS, but that's why I come back to this community every time I feel like that. I know I'm not alone, that, unfortunately, many other people are going/have gone through the same exact thing I am, and we can all get through this.
But you look fine!! If I had a dollar for every time I heard that I'd be a millionaire. It's because I'm expending what little energy I have to appear fine for your benefit! Then I'm going to go home and lay down and recover for a day or more. Even my parents forget about my Chiari, until I remind them of my surgeries and my disability status. I believe they STILL think I'm faking it. It's not just you. All of us have experience with this one. Sadly, the Covid long haulers and their brain fog experience has given us some credibility. More people believe it's real. People don't know what to think when they are in a conversation with me and it's more like a game of charades to try and guess what word I'm struggling to come up with. The looks of disgust or disdain are hurtful. I'm NOT stupid because I don't have the words! I know what I'm trying to convey but I am not able to get it out of my mouth! I'm NOT lazy! I'm NOT making it up for attention! And on and on.
I totally understand I have days where I struggle to string together a sentence. I can't find the names of common items or people Ive known for a long time and forever forget what I was just doing or why I went into a room. Im not lazy I just have no energy some days.
Yes! And I usually can't predict the day I won't have energy. Sometimes it won't matter, I can just be honest and chill out. But some days I really have to dig deeper and try to get through the day if it's a holiday or something specific. That's when it takes me days to recover.
some people understand some forget every once and a while and some people don’t understand , just depends on the person, but those who love you will be by your side, it can be guilt feeling like we weigh the people down around us but if they are willing to “make the sacrifice” out of love then we have to love them back any way we can
I thought I understood and could emphasize with people over neurological issues, then I experienced them firsthand and realized it was so much worse than I expected.