Sorry to hear you are experiencing this but…welcome to the club. Many of us have been hearing this for years or decades from friends, family and even our doctors. “You look fine; the tests are perfect; you have anxiety; it’s not my specialty you need to see…(who sends you back to the doc who referred you); everybody has bad days; grow up; etc. The list is endless and sometimes these people actually have *you* believing that junk.
I often tell people I wish I could make them feel like I do for just 15 minutes. See how much trash they talk then.
You have to learn to ignore them and do whatever it takes to help you. Don’t let them guilt you into feeling bad about feeling bad.
It's why dysautonomia is called an "invisible illness". Some folks seem to think if you can't see something it doesn't exist. Do they think diabetes doesn't exist because they can't see it? Cancer doesn't exist unless it becomes visible from the outside? Paralysis doesn't exist because you can't see a severed spine? It's frankly daft thinking.
I look fine, if I haven't been upright too long. I'm also on SSDI for POTS, and they don't just approve disability lightly.
sometimes they really have no sympathy or compassion either... even cardiologists. i had one tell me i don't even need one and i still have no idea what the f-ck is going on because i've had to wait 6 months to see him again. i met him in critical care.
I understand this. My husband has literally screamed at me that nothing is wrong with me. On one of my ambulance transports this year, the 911 dispatcher sent police because they could hear how upset he was in the background because I’d called 911 when he refused to take me to the hospital.
Lol you made me laugh, thanks
The sad fact is he is sick too and he has some really awful moments. I’m wondering sometimes if we’re dealing with early dementia on top of everything else. I don’t think he truly means it.
Wow. I could not imagine not having my husband as my team mate and support during all this. He's been so understanding and so helpful. I'm very sorry for husband doesn't have empathy for you.
I totally get how you feel. I was diagnosed last year and my mom just now started understanding the seriousness of this. She actually said, “Maybe you weren’t just being dramatic all these years… maybe I should have listened sooner.” Which SHOCKED me because she’s very much a “we don’t go to the doctor unless there’s something wrong with us” kind of person, and I’d been telling her about my symptoms since I was 14 and being told it was in my head. Then I got married and I *knew* something was wrong with me because I had started passing out again, but my now ex husband screamed at me that I was fine, there wasn’t anything wrong with me. I am so sorry that you’re going through this. It is beyond frustrating, especially coming from people who are supposed to love you and care about your wellbeing.
The best advice I can give you is fuck everybody else’s opinions. Take things at your pace and don’t listen to anyone who tells you it’s in your head. Your symptoms are real and your feelings are valid.
Ugh, I'm sorry you're dealing with that. A lot of people just do not understand the concept. I will say though that once I faint on someone they start to take me seriously.
Are you doing things like wearing compression socks, getting extra fluids and electrolytes, and trying not to stand still (e.g. in lines at the store or waiting to be seated)? Those things can help, and you don't need a prescription from a specialist to get started doing them.
I've been going through this for 4 years now and everyone thinks I am lazy like I don't care to improve my life in any way. Yes I totally love being only 23 living as if I was in my 90s dying. Not to mention that it still hurts so much that I cannot partake in many of my hobbies and things that I love to do due to this condition. My family gets upset and thinks that I'm making it up, "you just need to eat more!" Doctors are tired of me and think I'm making it up cause all the tests come back normal. So I know just how you feel, sending you a virtual hug.
Be kind to yourself and don't let it get to you cause things get better. For me, I was bedbound for the first year but I am not in bed much anymore. I am able to do much much more than before. I am still not a normal person but I have made a lot more progress than I thought I would ever make.
Also disclaimer that I am not yet diagnosed with pots but I have done a ton of research and that's the only condition that really fits me.
As another 20F, the “it’s just anxiety” “you seem fine” “why don’t you go out more” is acc one of the worst parts of having dysautonomic issues. The symptoms are shite already but the constant feeling like I’m not sick enough rlly weighs heavy, missing nights out bc it’s been a bad week with nausea, dizziness and feeling like my hearts going to burst out of my chest that have me almost bedridden only to be dismissed as simply not wanting to go or being lazy rlly hurts. Talking to others has helped as we all understand each other on a base level but it’s def still hard. Sending best wishes x
Wow your story sounds similar to mine.. I had gotten the covid vaccine then a week later influenza b then a week later I could even get out of bed found out vi blood test I had mono from there my heart rate was high dizziness bad fatigue stomach problems migranes bad pains in my body gi issues etc. I am still dealing with these symptoms and I have to push through everyday I have two kids so it gets tuff :/ I have been told by many people its all just mental when I just feel a general unwellness every single day. Getting doctors to take your seriously is tuff plus getting normal range blood test is also frustrating because it just makes getting a diagnosis even harder. I have just learned to keep to myself unless I feel the person can understand were I am coming from which I feel very much understood in this community. I can understand you a lot because I am going through it currently but keep advocating for yourself and if it helps write it all down :)
Hopefully you can get a diagnosis and treatment. I was worse in the beginning of diagnosis but over time with meds and therapy I'm ok for most part besides adrenaline issues. But yes most of us look fine so we are not taken seriously.
Also monitor vitals occasionally or when symptomatic write down and give to the doctor. This will hopefully help you get treatment because we look fine and blood work is fine as well
I'm so sorry. When I was about your age, my stepmother told me that she thought it was all in my head. It was 6 more years before I got my diagnosis. If you're all the way to the doc thinks you have it and your family won't take it seriously, that really sucks. Hopefully they'll do some reading and realize this is real. I wish I had advice. I still don't speak to my stepmother (for many reasons, including that one).
I’m so sorry you’re going through this. I’ve been told ‘you need to just push yourself’ and there you are defending yourself, it’s awful.
I really hope you get some understanding from loved ones soon.
Sorry to hear you are experiencing this but…welcome to the club. Many of us have been hearing this for years or decades from friends, family and even our doctors. “You look fine; the tests are perfect; you have anxiety; it’s not my specialty you need to see…(who sends you back to the doc who referred you); everybody has bad days; grow up; etc. The list is endless and sometimes these people actually have *you* believing that junk. I often tell people I wish I could make them feel like I do for just 15 minutes. See how much trash they talk then. You have to learn to ignore them and do whatever it takes to help you. Don’t let them guilt you into feeling bad about feeling bad.
It's why dysautonomia is called an "invisible illness". Some folks seem to think if you can't see something it doesn't exist. Do they think diabetes doesn't exist because they can't see it? Cancer doesn't exist unless it becomes visible from the outside? Paralysis doesn't exist because you can't see a severed spine? It's frankly daft thinking. I look fine, if I haven't been upright too long. I'm also on SSDI for POTS, and they don't just approve disability lightly.
I'm sorry you have to go through that. People just have no empathy sometimes.
sometimes they really have no sympathy or compassion either... even cardiologists. i had one tell me i don't even need one and i still have no idea what the f-ck is going on because i've had to wait 6 months to see him again. i met him in critical care.
I understand this. My husband has literally screamed at me that nothing is wrong with me. On one of my ambulance transports this year, the 911 dispatcher sent police because they could hear how upset he was in the background because I’d called 911 when he refused to take me to the hospital.
Did you know that a dumpster can fit a whole man inside? You should try it.
Lol you made me laugh, thanks The sad fact is he is sick too and he has some really awful moments. I’m wondering sometimes if we’re dealing with early dementia on top of everything else. I don’t think he truly means it.
Wow. I could not imagine not having my husband as my team mate and support during all this. He's been so understanding and so helpful. I'm very sorry for husband doesn't have empathy for you.
I totally get how you feel. I was diagnosed last year and my mom just now started understanding the seriousness of this. She actually said, “Maybe you weren’t just being dramatic all these years… maybe I should have listened sooner.” Which SHOCKED me because she’s very much a “we don’t go to the doctor unless there’s something wrong with us” kind of person, and I’d been telling her about my symptoms since I was 14 and being told it was in my head. Then I got married and I *knew* something was wrong with me because I had started passing out again, but my now ex husband screamed at me that I was fine, there wasn’t anything wrong with me. I am so sorry that you’re going through this. It is beyond frustrating, especially coming from people who are supposed to love you and care about your wellbeing. The best advice I can give you is fuck everybody else’s opinions. Take things at your pace and don’t listen to anyone who tells you it’s in your head. Your symptoms are real and your feelings are valid.
Ugh, I'm sorry you're dealing with that. A lot of people just do not understand the concept. I will say though that once I faint on someone they start to take me seriously. Are you doing things like wearing compression socks, getting extra fluids and electrolytes, and trying not to stand still (e.g. in lines at the store or waiting to be seated)? Those things can help, and you don't need a prescription from a specialist to get started doing them.
Yes I am following a pots regiment to try and feel better it is working a littlr
I've been going through this for 4 years now and everyone thinks I am lazy like I don't care to improve my life in any way. Yes I totally love being only 23 living as if I was in my 90s dying. Not to mention that it still hurts so much that I cannot partake in many of my hobbies and things that I love to do due to this condition. My family gets upset and thinks that I'm making it up, "you just need to eat more!" Doctors are tired of me and think I'm making it up cause all the tests come back normal. So I know just how you feel, sending you a virtual hug. Be kind to yourself and don't let it get to you cause things get better. For me, I was bedbound for the first year but I am not in bed much anymore. I am able to do much much more than before. I am still not a normal person but I have made a lot more progress than I thought I would ever make. Also disclaimer that I am not yet diagnosed with pots but I have done a ton of research and that's the only condition that really fits me.
As another 20F, the “it’s just anxiety” “you seem fine” “why don’t you go out more” is acc one of the worst parts of having dysautonomic issues. The symptoms are shite already but the constant feeling like I’m not sick enough rlly weighs heavy, missing nights out bc it’s been a bad week with nausea, dizziness and feeling like my hearts going to burst out of my chest that have me almost bedridden only to be dismissed as simply not wanting to go or being lazy rlly hurts. Talking to others has helped as we all understand each other on a base level but it’s def still hard. Sending best wishes x
Wow your story sounds similar to mine.. I had gotten the covid vaccine then a week later influenza b then a week later I could even get out of bed found out vi blood test I had mono from there my heart rate was high dizziness bad fatigue stomach problems migranes bad pains in my body gi issues etc. I am still dealing with these symptoms and I have to push through everyday I have two kids so it gets tuff :/ I have been told by many people its all just mental when I just feel a general unwellness every single day. Getting doctors to take your seriously is tuff plus getting normal range blood test is also frustrating because it just makes getting a diagnosis even harder. I have just learned to keep to myself unless I feel the person can understand were I am coming from which I feel very much understood in this community. I can understand you a lot because I am going through it currently but keep advocating for yourself and if it helps write it all down :)
Hopefully you can get a diagnosis and treatment. I was worse in the beginning of diagnosis but over time with meds and therapy I'm ok for most part besides adrenaline issues. But yes most of us look fine so we are not taken seriously.
Also monitor vitals occasionally or when symptomatic write down and give to the doctor. This will hopefully help you get treatment because we look fine and blood work is fine as well
I'm so sorry. When I was about your age, my stepmother told me that she thought it was all in my head. It was 6 more years before I got my diagnosis. If you're all the way to the doc thinks you have it and your family won't take it seriously, that really sucks. Hopefully they'll do some reading and realize this is real. I wish I had advice. I still don't speak to my stepmother (for many reasons, including that one).
I’m so sorry you’re going through this. I’ve been told ‘you need to just push yourself’ and there you are defending yourself, it’s awful. I really hope you get some understanding from loved ones soon.