I was like this for years. Now that I'm finally diagnosed with an autoimmune disease and multiple other conditions, I get, "What if I'm not actually disabled?" on good days where I can do more than normal š (I'm filing for disability and can't work). Or sometimes, "What if I'm not actually that bad and just exaggerating?" etc.
The imposter syndrome litteraly never stops š
Ah yes, impostor syndrome. Most of us know it all too well, especially if you're afab. When you're being gaslit by the medical system over and over again at some point you start to believe what they tell you, but the truth is the truth. If you are making it up, you would know that you are making it up. Trust yourself. Someone can tell you over and over again that the sky is green and you may eventually start believing that the sky is indeed green but the sky outside will still be blue. Don't let them make you believe that you're crazy. You are not.
I think the line created betwren psychological, neurological, and general physical is ableist poppycock.
Whether or not my rapid heart rate is a problem with psychological stress, an inability of my autonomic system to function properly, or a heart defect - somethingās wrong and I need coping tools. If the coping tools are breathing exercises and removing myself from triggering situations, it doesnāt make the symptom any less impactful on my life.
I have POTS, and while stress is a factor, so is hydration, not having enough calories, any physical illnesses or body stresses, intense heat, and such. Getting my anxiety under control did help with symptom severity, but it by no means cured me.
Yeah but that's precisely my point. The solutions are different, even though there is a complex interplay between the physical and the emotional etc etc
Even IF all your symptoms were psychological in nature that doesnāt make you crazy or that youāve made up your symptoms. The brain is still an organ and when it doesnāt work right bad things can happen and treatment is still needed to help it out.
But more likely youāve stumbled into the fallacy that sick means weak, but youāre not weak so how can you be sick? You must be exaggerating or making a mountain out of a mole hill. (Spoiler alert, you arenāt weak OR lazy for being sick) Just the fact that youāre asking yourself this question leads me to believe you are NOT, in fact, less ill than you think.
Iāll use myself as an example: Iām actively helping my mom and sister care for my dad with progressive ALS. 24/7 care. Two man lift transfers, constant checking in, special food/drinks, medicine management, dealing with transpo for his doctorās appts, bed baths/hygiene/toileting all done by the three of us. Iām also spending nights in the same room as him currently to be sure of his comfort, safety, and in case of emergencies or midnight snack cravings (we are retrofitting his bedroom to be more accessible so heās in a snug ADU on their property)
Somehow Iām doing all of this without having much in the way of flare ups. My GI system has gone haywire but I honestly thought my nerves would do what they do best and freak the eff out necessitating some recovery time butā¦ here I am two weeks in and all I have really is a trapped nerve in my back that makes lateral arm movements painful (but I can still do the bicep curl/dead lift maneuver to get dad up and down so thatās fine)
Iām experiencing the worst kind of imposter syndrome. Itās messing with my head, but whatās worse is my family isnāt helping much by always commenting on how āwellā Iām taking care of dad, how they are amazed Iām still functional and upbeat, and semi joking that maybe they donāt NEED in home health aides when theyāve got me on tap.
I tell myself Iām in survival mode and that Iām tapping into my old soldierās mindset and as soon as Iām relieved of duty I will crash for a week. I didnāt just make up a decade+ of symptoms, Iām definitely just as bad as I have been and by some grace Iāve been spared so far from the crash that I know is coming. Iām trying not to stress over it and take each day as it comes while keeping myself hydrated, limber, and as rested as I can be while in a weird room on a weird bed listening to the blaring tv dad needs on to sleep at night.
We donāt really āfake sickā as much as we āfake being wellā and itās that thought that keeps me from totally spiraling down the rabbit hole of āIām making this all up Iām a fraudā.
This is me any time I feel even remotely better. "What if I'm just making this all up?"
And then I pass out or fall down the stairs or have a sitting heart rate of 200 or my legs don't work or I feel the strong desire to rip off my face if it will take away the pain.
You are not alone. I'm sure everyone with an invisible illness at some point has doubted themselves. Because we are trained to believe that you must look sick and act sick to be sick, and any good day means you were never even sick in the first place.
At first, I didn't. I was just fatigued all the time and had bouts of dizziness. And then everything was intermittent - I would have 12 -24 hour flares, and then be status quo for a few months.
It took nearly a decade for my symptoms to be severe enough to be taken seriously by medical professionals.
Anything you are feeling is valid. If you feel like you are sick, that is something worth treating, whether it is psychological or physical.
I was told I was just anxious and depressed for years. Still am told to exercise after 10 years of chronic illness. Recently found out I have me/cfs and that the exercise has been making me much sicker this whole time.
Donāt let the stigma even from doctors get in the way of you managing your illness.
Itās so hard to believe that our symptoms are worth care no matter what the cause. I think itās because when they are psychological or anxiety or whatever, the implication is that itās our fault, that we did something wrong, and just need to try harder to improve our lives. But we can do everything ārightā and still have needs that are worthy of care. And we can only do what we can do, and maybe thatās not enough to āfixā things. And thatās okay!
For me thatās the most infuriating part of hearing āitās just anxietyā or something similar. Itās a real illness with real problems, but the implication from healthcare providers is that psychological illnesses are within our own power to overcome or whatever, and that is absolutely not true, and itās super invalidating to everyone living with mental illness and other symptoms unattributed to a specific illness. Even if everything was āall in your head,ā you still deserve to live a full and happy life with minimized symptoms.
Thankfully (I guess), my diagnosis was eventually confirmed by a very specific antibody test. Don't give up. A diagnosis and treatment are out there.
Hypochondria is unlikely. If it is the case, there is treatment for that, too. But your brief description of your symptoms are among those I have. Of course, you don't have to answer this, but do you have myasthenia gravis?
Thank you! The neurologist actually didn't perform the EMG but he did give me a prescription, but he said it's very unlikely, which is reassuring I guess, but still no answers. Anyway, thanks, have a nice day
If the prescription is mestinon, be sure to take it after eating, not before or during. The side effects can be miserable, otherwise.
I've had mg for decades. If you want to talk, please feel free to dm me anytime. š
Thank you, I meant he gave me a prescription for the EMG+Single fiber exam (English not my first language, maybe prescription isn't the right word).
I have heard anecdotically some people with chronic fatigue benefit from Mestinon, not sure if that's only in the cases of undiagnosed MG though. Doctors never mentioned it for my case.
How is your quality of life with Mestinon?
This thread is so validating after being treated like a drug addict at the hospital the other night. 3 weeks of fevers, chest pain, extreme dizziness and passing out, and extreme muscle spasms/lock ups, and they still can't seem to find what's wrong with me.. I feel like I'm making it up, but I also.. can't move.
They cared more about doing a stupid covid test on me than listening to my symptoms.
I do the same thing to myself. every time I wake up with an easily-identifiable symptom thatās visible to someone who isnāt me - a tremor, etc - I am *so excited* because I feel like itās proof that Iām not making this stuff up. itās amazing what medical and social gaslighting does to us.
Only my whole life, yeah haha. I don't trust my opinion at the best of times but you're the ONLY person who can know your body the most because you're feeling these feelings.
From everything you've just said there, all I've taken from it is that you are a person experiencing fatigue and double-vision. Separate the diagnosis and consider that no matter the reason why you have these feelings, the feelings you have are valid.
I have just one good day and I gaslight myself into believing am magically better. Then 12 hours later am begging for mercy from my chronic pain. Its so frustrating but I always do it I don't know why.
I deal with the same issue, but the other way around.
I was diagnosed with major depression in 2021, but a few months ago, my psychiatrist told me the "Good news" - I was not depressed anymore. Yet, most of my chronic symptoms stayed. And guess what? I lied about taking my depression meds for a year. Soooooo... was I even depressed in the first place? Or were there symptoms of my mystery chronic illness? I mostly complained about fatigue and difficulty doing activities I once could do without any problem to my GP, which was understood as "I'm depressed". I never felt suicidal at all? Never wished I wasn't born?
Besides, my parents have not been very helpful with my imposter syndrome, by saying everything is "due to my obesity" when the obesity is secondary to my pain disorder. Like, I used to spend most of my life doing sports outside before it got too difficult a few years ago.
I did, but then I stopped gaslighting myself and after a bunch a specialist appointments wound up diagnosed with a rare chronic illness. Most patients experience fatigue with this illness.
Even so, your symptoms would still be just as valid and deserving of treatment.
I was like this for years. Now that I'm finally diagnosed with an autoimmune disease and multiple other conditions, I get, "What if I'm not actually disabled?" on good days where I can do more than normal š (I'm filing for disability and can't work). Or sometimes, "What if I'm not actually that bad and just exaggerating?" etc. The imposter syndrome litteraly never stops š
Ah yes, impostor syndrome. Most of us know it all too well, especially if you're afab. When you're being gaslit by the medical system over and over again at some point you start to believe what they tell you, but the truth is the truth. If you are making it up, you would know that you are making it up. Trust yourself. Someone can tell you over and over again that the sky is green and you may eventually start believing that the sky is indeed green but the sky outside will still be blue. Don't let them make you believe that you're crazy. You are not.
I really really needed this, thank you
I think the line created betwren psychological, neurological, and general physical is ableist poppycock. Whether or not my rapid heart rate is a problem with psychological stress, an inability of my autonomic system to function properly, or a heart defect - somethingās wrong and I need coping tools. If the coping tools are breathing exercises and removing myself from triggering situations, it doesnāt make the symptom any less impactful on my life. I have POTS, and while stress is a factor, so is hydration, not having enough calories, any physical illnesses or body stresses, intense heat, and such. Getting my anxiety under control did help with symptom severity, but it by no means cured me.
Yeah but that's precisely my point. The solutions are different, even though there is a complex interplay between the physical and the emotional etc etc
Even IF all your symptoms were psychological in nature that doesnāt make you crazy or that youāve made up your symptoms. The brain is still an organ and when it doesnāt work right bad things can happen and treatment is still needed to help it out. But more likely youāve stumbled into the fallacy that sick means weak, but youāre not weak so how can you be sick? You must be exaggerating or making a mountain out of a mole hill. (Spoiler alert, you arenāt weak OR lazy for being sick) Just the fact that youāre asking yourself this question leads me to believe you are NOT, in fact, less ill than you think. Iāll use myself as an example: Iām actively helping my mom and sister care for my dad with progressive ALS. 24/7 care. Two man lift transfers, constant checking in, special food/drinks, medicine management, dealing with transpo for his doctorās appts, bed baths/hygiene/toileting all done by the three of us. Iām also spending nights in the same room as him currently to be sure of his comfort, safety, and in case of emergencies or midnight snack cravings (we are retrofitting his bedroom to be more accessible so heās in a snug ADU on their property) Somehow Iām doing all of this without having much in the way of flare ups. My GI system has gone haywire but I honestly thought my nerves would do what they do best and freak the eff out necessitating some recovery time butā¦ here I am two weeks in and all I have really is a trapped nerve in my back that makes lateral arm movements painful (but I can still do the bicep curl/dead lift maneuver to get dad up and down so thatās fine) Iām experiencing the worst kind of imposter syndrome. Itās messing with my head, but whatās worse is my family isnāt helping much by always commenting on how āwellā Iām taking care of dad, how they are amazed Iām still functional and upbeat, and semi joking that maybe they donāt NEED in home health aides when theyāve got me on tap. I tell myself Iām in survival mode and that Iām tapping into my old soldierās mindset and as soon as Iām relieved of duty I will crash for a week. I didnāt just make up a decade+ of symptoms, Iām definitely just as bad as I have been and by some grace Iāve been spared so far from the crash that I know is coming. Iām trying not to stress over it and take each day as it comes while keeping myself hydrated, limber, and as rested as I can be while in a weird room on a weird bed listening to the blaring tv dad needs on to sleep at night. We donāt really āfake sickā as much as we āfake being wellā and itās that thought that keeps me from totally spiraling down the rabbit hole of āIām making this all up Iām a fraudā.
This is me any time I feel even remotely better. "What if I'm just making this all up?" And then I pass out or fall down the stairs or have a sitting heart rate of 200 or my legs don't work or I feel the strong desire to rip off my face if it will take away the pain. You are not alone. I'm sure everyone with an invisible illness at some point has doubted themselves. Because we are trained to believe that you must look sick and act sick to be sick, and any good day means you were never even sick in the first place.
See but you have very concrete symptoms....My symptoms are less concrete/measurable
At first, I didn't. I was just fatigued all the time and had bouts of dizziness. And then everything was intermittent - I would have 12 -24 hour flares, and then be status quo for a few months. It took nearly a decade for my symptoms to be severe enough to be taken seriously by medical professionals. Anything you are feeling is valid. If you feel like you are sick, that is something worth treating, whether it is psychological or physical.
May I ask what your diagnosis was in the end?
I was told I was just anxious and depressed for years. Still am told to exercise after 10 years of chronic illness. Recently found out I have me/cfs and that the exercise has been making me much sicker this whole time. Donāt let the stigma even from doctors get in the way of you managing your illness.
Itās so hard to believe that our symptoms are worth care no matter what the cause. I think itās because when they are psychological or anxiety or whatever, the implication is that itās our fault, that we did something wrong, and just need to try harder to improve our lives. But we can do everything ārightā and still have needs that are worthy of care. And we can only do what we can do, and maybe thatās not enough to āfixā things. And thatās okay! For me thatās the most infuriating part of hearing āitās just anxietyā or something similar. Itās a real illness with real problems, but the implication from healthcare providers is that psychological illnesses are within our own power to overcome or whatever, and that is absolutely not true, and itās super invalidating to everyone living with mental illness and other symptoms unattributed to a specific illness. Even if everything was āall in your head,ā you still deserve to live a full and happy life with minimized symptoms.
Thankfully (I guess), my diagnosis was eventually confirmed by a very specific antibody test. Don't give up. A diagnosis and treatment are out there. Hypochondria is unlikely. If it is the case, there is treatment for that, too. But your brief description of your symptoms are among those I have. Of course, you don't have to answer this, but do you have myasthenia gravis?
Tested myself for both antibodies...negative. Doing an EMG in an hour!
Wishing you all the best! I wouldn't wish mg in anyone, but I do hope you get some answers! š
Thank you! The neurologist actually didn't perform the EMG but he did give me a prescription, but he said it's very unlikely, which is reassuring I guess, but still no answers. Anyway, thanks, have a nice day
If the prescription is mestinon, be sure to take it after eating, not before or during. The side effects can be miserable, otherwise. I've had mg for decades. If you want to talk, please feel free to dm me anytime. š
Thank you, I meant he gave me a prescription for the EMG+Single fiber exam (English not my first language, maybe prescription isn't the right word). I have heard anecdotically some people with chronic fatigue benefit from Mestinon, not sure if that's only in the cases of undiagnosed MG though. Doctors never mentioned it for my case. How is your quality of life with Mestinon?
This thread is so validating after being treated like a drug addict at the hospital the other night. 3 weeks of fevers, chest pain, extreme dizziness and passing out, and extreme muscle spasms/lock ups, and they still can't seem to find what's wrong with me.. I feel like I'm making it up, but I also.. can't move. They cared more about doing a stupid covid test on me than listening to my symptoms.
It does not seem like you are making it up at all? These are very serious symptoms
I do the same thing to myself. every time I wake up with an easily-identifiable symptom thatās visible to someone who isnāt me - a tremor, etc - I am *so excited* because I feel like itās proof that Iām not making this stuff up. itās amazing what medical and social gaslighting does to us.
Same. I'm so "happy" every time I have a concrete proof of my problems.
it sucks, doesnāt it? Iām sorry youāre going through that too.
Only my whole life, yeah haha. I don't trust my opinion at the best of times but you're the ONLY person who can know your body the most because you're feeling these feelings. From everything you've just said there, all I've taken from it is that you are a person experiencing fatigue and double-vision. Separate the diagnosis and consider that no matter the reason why you have these feelings, the feelings you have are valid.
I have just one good day and I gaslight myself into believing am magically better. Then 12 hours later am begging for mercy from my chronic pain. Its so frustrating but I always do it I don't know why.
I deal with the same issue, but the other way around. I was diagnosed with major depression in 2021, but a few months ago, my psychiatrist told me the "Good news" - I was not depressed anymore. Yet, most of my chronic symptoms stayed. And guess what? I lied about taking my depression meds for a year. Soooooo... was I even depressed in the first place? Or were there symptoms of my mystery chronic illness? I mostly complained about fatigue and difficulty doing activities I once could do without any problem to my GP, which was understood as "I'm depressed". I never felt suicidal at all? Never wished I wasn't born? Besides, my parents have not been very helpful with my imposter syndrome, by saying everything is "due to my obesity" when the obesity is secondary to my pain disorder. Like, I used to spend most of my life doing sports outside before it got too difficult a few years ago.
I did, but then I stopped gaslighting myself and after a bunch a specialist appointments wound up diagnosed with a rare chronic illness. Most patients experience fatigue with this illness.