Medical invalidation/gaslighting

[Red]

The waves keep trying to close over my head. Trying so hard to be grateful n thankful for the things I do have but this one thing is so all encompassing that it's so hard right now.

Things to be thankful for:
My husband, to whom I have never felt closer due to extra work we have put into our marriage lately.
My loving son and beautiful cats.
My wonderful grandmother and one sibling of five who actually appears to give a shit about me.
Toxic people removed from life, peace has followed and it's fantastic!
Being financially stable, despite being unable to work (thanks to husband).
Nice place to live.

I feel like the rest of life is pretty much made (at least a damn sight better than it's ever been before!) but it's just this damn physical shit that is weighing me down; the constant pain, fatigue and subsequent invalidation by the medical people (I refuse to say "professional" at this point) who can't be arsed to delve deeper than surface tests for common ailments, preferring to imply mental illness instead…

It just doesn't ring true. Believe me, I've considered it multiple times over these last few years and it just doesn't tally.

Have a last chance hope but again daren't hope too much for fear of disappointment. Got appt with spinal specialist towards the end of next month to try to find the cause of the worst of my pains. Rave reviews, seems to know his shit and does both proper tests and treatments, only using surgery as last resort.

Going in expecting defeat before we even start; stolidly posting this in recovery because accurate diagnosis and treatment is the first outcome I desperately want, however by now that seems like much too tall an order for what my life is willing to provide lol I'd easily settle for the much more realistic wish of a definite end to all of it.

Have the symptoms evaporate (much too big a wish for the likes of me!), never to see a doctor again, or just kaput; bosh, gone forever, never to be a burden to anyone ever again.

It just irks me that out of all the possibilities that could occur for my situation, I'm left with the most distressing one; suffering without knowing what it is or anyone really believing me. Literally any other outcome would be acceptable yet the single one that is unbearable is the way that it is.

Living for nearly 40 years without emotional validation has taught me not to seek it and to reply on myself, but how are you supposed to cope with medical invalidation and gaslighting?? We rely on these people to help us but really they don't give a shit. It's so demoralising.

Rant over.
Thanks for reading.
Sorry to dump my handbag out on your metaphorical laps, especially as I've been so quiet lately. Not feeling strong enough to attempt much.

Just so tired.

 

[kappa]

I think the medical invalidation is very common with women.

I often regret how much I've talked about past depression, anxiety, ect. since now any physical symptom I have is related to that. Sleep problems? Take antidepressants. Pain? Take antidepressants, pain is common in depression. Just get on antidepressants and it will basically cure everything.

I've had this weird, random horrible back pain since I was a teen. I was 31 when a physicians assistant asked, "Has anyone ever told you that you have scoliosis?" Anyone else I mentioned this too just said it was probably depression pains. All those years of people saying "why would your back hurt, you don't even do anything" to finally find out I had a back issue lol.

Is there any way to go to a new clinic that doesn't have your information about your past mental health? I think you can refuse to fax your history over, right?

 

[Red]

I think the medical invalidation is very common with women.

I often regret how much I've talked about past depression, anxiety, ect. since now any physical symptom I have is related to that. Sleep problems? Take antidepressants. Pain? Take antidepressants, pain is common in depression. Just get on antidepressants and it will basically cure everything.

I've had this weird, random horrible back pain since I was a teen. I was 31 when a physicians assistant asked, "Has anyone ever told you that you have scoliosis?" Anyone else I mentioned this too just said it was probably depression pains. All those years of people saying "why would your back hurt, you don't even do anything" to finally find out I had a back issue lol.

Is there any way to go to a new clinic that doesn't have your information about your past mental health? I think you can refuse to fax your history over, right?

Apologies I've only just seen this!

Yes very true the women do not get taken as seriously as men! In fact I feel somewhat profiled throughout this period of illness - I was tested over and over again for STDs despite telling them again and again that I was in a committed relationship for 4-5 years prior which has continued on to 10 years next week; we are now married and I've not even so much as LOOKED at another man!

But they just don't listen…

Going to the spinal specialist without referral (as is my privilege being a self pay patient), feeling like any contact from myGP is just going to hurt my case so leaving them out of the mix.

Any previous adverse mental health history was literally over two decades ago during the end of my misspent youth when I was cut loose from a bad childhood into a terrible "friend" group and got involved with too many street chemicals. Nothing since for 20 years. But after they suggested "psychogenic", I got assessed by the NHS for anxiety and depression off my own back - yesterday they gave me the all clear; even said I had a right to be more upset than I actually am considering the circumstances! They signed me off n say they'll write to my GP but honestly I don't think anyone at my local surgery will even listen, they've given up on me rather than consider rarer causes or atypical presentation.

I've pretty much given up on the NHS in return for now n will concentrate on the private specialist; if that turns out unsuccessful I'll present my case one last time to the NHS. After that I don't know if I've got any more fight left in me.

Just so terrible that they'd rather assume you're mental or faking rather than legitimately unwell.

 

[GentleJerk]

I completely understand what you're saying, and agree 100%.

Finding a good doctor that will actually listen and provide quality medical care, can feel like winning a lottery. I should know, I still haven't found one. Most are unsuited for a role in medicine imo, some are even downright criminals and monsters.

Many people are tricked into being branded with a mental health diagnosis at some point during their interaction with GP's and doctors, usually because doctors are unable/unwilling to properly diagnose the real issue(s). You would be surprised how common this is. Once that mark is on file, even something as simple as 'depression', patients get frequently ignored and dismissed, have their symptoms blamed on mental issues, or even accused of the ol' psych patient attention seeking.

Personally I think it's just a common way for those who work in medicine to make their own lives easier, or mistreat patients they don't particularly like, or dodge having to work harder and engage in proper investigation.

 

[nys]

I'm sorry that's happening to you...I don't know if this is going to work, but maybe try to research some possible causes of the fatigue? And then you can go to the doctor and request a screening for that specific illness. Maybe if it's more specific and you're only requesting one at a time, and not just asking them what your illness is out of a lot of possibilities, it would be easier for them to do and they would be more willing to do it. Then you could rule out some possible causes of the symptoms. Again I'm not sure this will work since I've never been in your situation before but it was just a thought. I hope everything goes well for you

 

[chronicallybroken]

I think the medical invalidation is very common with women.

I often regret how much I've talked about past depression, anxiety, ect. since now any physical symptom I have is related to that. Sleep problems? Take antidepressants. Pain? Take antidepressants, pain is common in depression. Just get on antidepressants and it will basically cure everything.

I've had this weird, random horrible back pain since I was a teen. I was 31 when a physicians assistant asked, "Has anyone ever told you that you have scoliosis?" Anyone else I mentioned this too just said it was probably depression pains. All those years of people saying "why would your back hurt, you don't even do anything" to finally find out I had a back issue lol.

Is there any way to go to a new clinic that doesn't have your information about your past mental health? I think you can refuse to fax your history over, right?

It's called diagnostic overshadowing.

I have scoliosis, not diagnosed as such but a radiographer mentioned after reviewing a chest X-ray for something else. No idea how serious it is, no one else has ever noticed it.

 

[Red]

I'm sorry that's happening to you...I don't know if this is going to work, but maybe try to research some possible causes of the fatigue? And then you can go to the doctor and request a screening for that specific illness. Maybe if it's more specific and you're only requesting one at a time, and not just asking them what your illness is out of a lot of possibilities, it would be easier for them to do and they would be more willing to do it. Then you could rule out some possible causes of the symptoms. Again I'm not sure this will work since I've never been in your situation before but it was just a thought. I hope everything goes well for you

Done so much research that I now have a short list of possibilities, just like on House lol but I haven't the resources or skill set to go through it myself to cross stuff off and need a proper, receptive professional onside…

But I have yet to find a doctor who will really listen to me instead of binning me off too soon as they can't be bothered to delve any deeper, preferring instead to write me off as mental or dramatic when neither is, or ever has been, the case.

Had tel appt with GP the other day to try to restart investigations and actually needed up cancelling it, not having the energy to argue my case yet again to people who should be more receptive yet aren't. It shouldn't be this much of a fight, especially as it's hard enough feeling as unwell as I do. I've done everything stupid they've suggested, imbibing vitamins, supplements and vast amounts of water; giving up sugar and tobacco, tweaking dietary choices, exercising every day to fight the "deconditioning" they claimed to be the cause but never thought to question why I went from exceedingly healthy to "deconditioned" in the first place..?

None of them can be bothered to puzzle it out, that's the scary thing. Why is it so hard to ask them to simply do the job for which they are paid??

If I do get diagnosed eventually and the late diagnosis proves to be detrimental, I think I have a very good case for legal action by this point as many investigations have been concluded too early before ruling out certain possibilities.

The worrying thing is that they haven't even definitively ruled out malignancy, stopping just short of the gold standard of lymph node biopsy for some reason. Much more important to save NHS money than a life like mine it seems. No thought for rare conditions or atypical presentation; if they don't see it every day, it's not real, apparently?

The whole process is exhausting and has dragged on for over five years now, there is an ebb n flow to the way it goes. Right now it's ebb; too tired to push, semi resigned to living with it, slowly gathering strength to fuel the next plea while dealing with the current flare of fatigue, blinding pain that takes my breath away, fevers, chills, joint pain, skin itching and weird aching armpits whenever I drink booze lol so many targets for biopsy like lymph nodes and skin clues they could peek at but they just aren't doing it. Hell, I've even developed a weird skin lesion and been referred to a non urgent skin clinic that won't even send me a letter until a few months in the future, let alone an appt!

I don't know who is ruining it for the rest of us by imagining symptoms or even making them up but from what I can tell, the actual figures that represent these people are incredibly low. Considering the alternative, of genuinely unwell people going undiagnosed and therefore untreated, you'd think they'd be a bit more careful! But no, apparently the very small chance of being taken for a fool is much better avoided than improving the quality of some poor patient's life.

I used to trust the medical profession implicitly; now not so much. Or at all. It's all about money, not being arsed to do anything out of the ordinary and covering their own arses when it turns out they've done wrong. If I end up litigating later, you can bet your arse that they'll put all the energy they can damn well muster to fight THAT (I once made a half hearted complaint about a consultant that had done half a job; in reply to my small semi-paragraph, I got a several page reply full of half truths and outright LIES to cover themselves rather than just looking at how they fell short); if only they could apply the same dedication to their work in the first place.

I'd be really angry if I had the energy lol as it stands I'm just tired, trying to ignore it n live my life but failing miserably as it gets worse and worse as time goes by.

Argh sorry for the rant, I try to keep a lid on it most of the time because nobody really wants to hear it lol thanks to all of you who empathise with me and who offer support; it really is invaluable to me and once again I am hugely grateful to this site and community

 

[noaccount]

It's not other patients ruining things, it's authoritarian, eugenicist, class-elitist doctors and other professionals. :(

 

[Hollowillow]

The waves keep trying to close over my head. Trying so hard to be grateful n thankful for the things I do have but this one thing is so all encompassing that it's so hard right now.

Things to be thankful for:
My husband, to whom I have never felt closer due to extra work we have put into our marriage lately.
My loving son and beautiful cats.
My wonderful grandmother and one sibling of five who actually appears to give a shit about me.
Toxic people removed from life, peace has followed and it's fantastic!
Being financially stable, despite being unable to work (thanks to husband).
Nice place to live.

I feel like the rest of life is pretty much made (at least a damn sight better than it's ever been before!) but it's just this damn physical shit that is weighing me down; the constant pain, fatigue and subsequent invalidation by the medical people (I refuse to say "professional" at this point) who can't be arsed to delve deeper than surface tests for common ailments, preferring to imply mental illness instead…

It just doesn't ring true. Believe me, I've considered it multiple times over these last few years and it just doesn't tally.

Have a last chance hope but again daren't hope too much for fear of disappointment. Got appt with spinal specialist towards the end of next month to try to find the cause of the worst of my pains. Rave reviews, seems to know his shit and does both proper tests and treatments, only using surgery as last resort.

Going in expecting defeat before we even start; stolidly posting this in recovery because accurate diagnosis and treatment is the first outcome I desperately want, however by now that seems like much too tall an order for what my life is willing to provide lol I'd easily settle for the much more realistic wish of a definite end to all of it.

Have the symptoms evaporate (much too big a wish for the likes of me!), never to see a doctor again, or just kaput; bosh, gone forever, never to be a burden to anyone ever again.

It just irks me that out of all the possibilities that could occur for my situation, I'm left with the most distressing one; suffering without knowing what it is or anyone really believing me. Literally any other outcome would be acceptable yet the single one that is unbearable is the way that it is.

Living for nearly 40 years without emotional validation has taught me not to seek it and to reply on myself, but how are you supposed to cope with medical invalidation and gaslighting?? We rely on these people to help us but really they don't give a shit. It's so demoralising.

Rant over.
Thanks for reading.
Sorry to dump my handbag out on your metaphorical laps, especially as I've been so quiet lately. Not feeling strong enough to attempt much.

Just so tired.

Literally my reason to die... Not the pain but the invalidation of the pain... Of my needs and who I am.

Nutrition can heal because malnutrition cause most diseases... And drugs worsen them with side effect causing what they promise to cure. Vitamin b rebuild nerves, but pain killers worsen pain...
Maybe you're allergic to booze, like I seem to be. Craving alcohol is a sign if anemia, it will take more than a multivitamin to fix that. I take high doses of b & c. 4g of c... I'm impressed that your doctor suggested to fix your basic self care instead to drug you. Lucky.

Done so much research that I now have a short list of possibilities, just like on House lol but I haven't the resources or skill set to go through it myself to cross stuff off and need a proper, receptive professional onside…

But I have yet to find a doctor who will really listen to me instead of binning me off too soon as they can't be bothered to delve any deeper, preferring instead to write me off as mental or dramatic when neither is, or ever has been, the case.

Had tel appt with GP the other day to try to restart investigations and actually needed up cancelling it, not having the energy to argue my case yet again to people who should be more receptive yet aren't. It shouldn't be this much of a fight, especially as it's hard enough feeling as unwell as I do. I've done everything stupid they've suggested, imbibing vitamins, supplements and vast amounts of water; giving up sugar and tobacco, tweaking dietary choices, exercising every day to fight the "deconditioning" they claimed to be the cause but never thought to question why I went from exceedingly healthy to "deconditioned" in the first place..?

None of them can be bothered to puzzle it out, that's the scary thing. Why is it so hard to ask them to simply do the job for which they are paid??

If I do get diagnosed eventually and the late diagnosis proves to be detrimental, I think I have a very good case for legal action by this point as many investigations have been concluded too early before ruling out certain possibilities.

The worrying thing is that they haven't even definitively ruled out malignancy, stopping just short of the gold standard of lymph node biopsy for some reason. Much more important to save NHS money than a life like mine it seems. No thought for rare conditions or atypical presentation; if they don't see it every day, it's not real, apparently?

The whole process is exhausting and has dragged on for over five years now, there is an ebb n flow to the way it goes. Right now it's ebb; too tired to push, semi resigned to living with it, slowly gathering strength to fuel the next plea while dealing with the current flare of fatigue, blinding pain that takes my breath away, fevers, chills, joint pain, skin itching and weird aching armpits whenever I drink booze lol so many targets for biopsy like lymph nodes and skin clues they could peek at but they just aren't doing it. Hell, I've even developed a weird skin lesion and been referred to a non urgent skin clinic that won't even send me a letter until a few months in the future, let alone an appt!

I don't know who is ruining it for the rest of us by imagining symptoms or even making them up but from what I can tell, the actual figures that represent these people are incredibly low. Considering the alternative, of genuinely unwell people going undiagnosed and therefore untreated, you'd think they'd be a bit more careful! But no, apparently the very small chance of being taken for a fool is much better avoided than improving the quality of some poor patient's life.

I used to trust the medical profession implicitly; now not so much. Or at all. It's all about money, not being arsed to do anything out of the ordinary and covering their own arses when it turns out they've done wrong. If I end up litigating later, you can bet your arse that they'll put all the energy they can damn well muster to fight THAT (I once made a half hearted complaint about a consultant that had done half a job; in reply to my small semi-paragraph, I got a several page reply full of half truths and outright LIES to cover themselves rather than just looking at how they fell short); if only they could apply the same dedication to their work in the first place.

I'd be really angry if I had the energy lol as it stands I'm just tired, trying to ignore it n live my life but failing miserably as it gets worse and worse as time goes by.

Argh sorry for the rant, I try to keep a lid on it most of the time because nobody really wants to hear it lol thanks to all of you who empathise with me and who offer support; it really is invaluable to me and once again I am hugely grateful to this site and community

 

[whatevs]

I completely understand what you're saying, and agree 100%.

Finding a good doctor that will actually listen and provide quality medical care, can feel like winning a lottery. I should know, I still haven't found one. Most are unsuited for a role in medicine imo, some are even downright criminals and monsters.

Many people are tricked into being branded with a mental health diagnosis at some point during their interaction with GP's and doctors, usually because doctors are unable/unwilling to properly diagnose the real issue(s). You would be surprised how common this is. Once that mark is on file, even something as simple as 'depression', patients get frequently ignored and dismissed, have their symptoms blamed on mental issues, or even accused of the ol' psych patient attention seeking.

Personally I think it's just a common way for those who work in medicine to make their own lives easier, or mistreat patients they don't particularly like, or dodge having to work harder and engage in proper investigation.

Anyone that has had a chronic illness for years that isn't completely self-evident knows exactly what you mean.

Even people with visible chronic diseases will grow bitter and tired of doctors. There's something very rotten with these paid and bought for vermin. I wish I had never felt the need to deal with them.

 

[Someone123]

This is the deafult in the medical professions- if they can't figure out what it is, they say it's in your head- this is so consistent that many people start to question whether it is in their head, even if they know it isn't. One posssibility that is common is that a person has a rare medical condition that is difficult to diagnose. ANother possibility is a medical issue that people don't even know exists at all- it's safe to say that if society evolves (without something catastrophic wrecking the qworld, like a war on an environmental issue) that a large number of medical issues will be diagnosable and treatable then that people don't even know exists knows- maybe even hundreds of rare medical conditions that don't get diagnosed now that will get diagnosed then. It is very nhard to find a doctor who will admit the truth- that they don't know what is causing the issue- they go right to- it's in your head, you're crazy. One possible explanation for almost any undiagnosed medical condition is a very small brain tumor or other brain abnormality that causes the condition, but there could also be many more explanations. It's worth it to keep trying to find a doctor who will admit they don't know rather than to say it's in your head- then they can keep probing and trying other specialists to at least give you a chance.

 

[noaccount]

@Red if you had financial support could you pay to have a biopsy done privately? I could at least share a gofundme in some circles of folks I know, I've had luck with that before and I'm pretty decent at networking.

 

[Red]

Literally my reason to die... Not the pain but the invalidation of the pain... Of my needs and who I am.

Nutrition can heal because malnutrition cause most diseases... And drugs worsen them with side effect causing what they promise to cure. Vitamin b rebuild nerves, but pain killers worsen pain...
Maybe you're allergic to booze, like I seem to be. Craving alcohol is a sign if anemia, it will take more than a multivitamin to fix that. I take high doses of b & c. 4g of c... I'm impressed that your doctor suggested to fix your basic self care instead to drug you. Lucky.

I cycled through many drugs before tapering down to the bare minimum again. The drugs don't really work lol
My diet is pretty clean and I take multivitamins every day, along with exercise. I'm convinced that it's not a lifestyle issue as I've changed so much with no effect.

@Red if you had financial support could you pay to have a biopsy done privately? I could at least share a gofundme in some circles of folks I know, I've had luck with that before and I'm pretty decent at networking.

It's quite hard to get anyone to do anything, even when we go private!
I get the exact same treatment from them as the NHS doctors - they say they aren't going to perform any "unnecessary procedures".
The thought of crowdfunding medical treatment had never occurred to me; tbh the amount of money needed seems more than what I'm actually worth

 

[http-410]

You have already had the appointment with the specialist, haven't you? May I ask if there are any clues yet as to where your pain is coming from?

 

[Red]

You have already had the appointment with the specialist, haven't you? May I ask if there are any clues yet as to where your pain is coming from?

Hi http, hope you're holding up okay hon sorry not been v active lately, I'll read up on your thread when I have the energy later

Yep, saw the specialist a couple weeks ago, he sent me for yet another MRI, which by chance I actually just got back from today. Tbh I don't expect anything to come from it other than another dent in our finances- I've had several MRIs over the last 5 years which have yielded nothing, I don't know why he thinks this one will be different?

It was a weird experience today… my husband appears to be behind me with regards to these investigations etc but today he seemed really angry at me; he barely said a word to me during the drive there and back and when it came to paying for the scan (not cheap at £470), he came in, paid, then left me to struggle juggling my crutch, the heavy front door and a cup of water as he immediately strode straight back to the car without looking back.

As always, I both apologised and thanked him for the time and money needed for this endeavour but it seemed to do nothing to soften him.

It seems unrelated but I was already feeling kinda crappy as the pain has been horrific lately, plus I spent time in a social setting on Friday where people spent a lot of time telling me how utterly shit my parents are lol it was strange having spent so long knowing this yet being invalidated and gaslit for so many years on the subject. I was always told that my perceptions were off, that I was being dramatic etc but suddenly I find I was right all along… just when the subject is pretty much moot at nearly 40 years old!

It all adds to the profound feeling of being cursed, dramatic as that sounds too lol it seems that no matter what I do, I'm doomed, in one way or another, to know what is wrong and to be able to articulate it fairly decently, only to be ignored until it's too late to fix; the crappiness of my parents, of friend groups, circumstance etc; then when I adjust myself not to care about that shit anymore, the physical stuff comes in from nowhere to knock me off my feet once again.

This illness is obviously affecting my husband too, despite my efforts to mitigate any transference to him. He's coped well over the last half decade, I can see why it must be tiresome for him.

Anyway, gotta wait for the scan report n follow up with consultant in just under 3 weeks (it's so long due to our schedule, not theirs). If nothing comes from this I think I'm just going to have to give up trying to figure it out. The NHS think I'm mental, private costs too much and I just need to try to be as little trouble as I can possibly be from now on for fear of losing the few good things I do have.

I'm scared of what the future holds. I do the whole "trying to live with it" thing most of the time, then it flares, becomes unbearable and forces me to beg for help. Without anywhere to seek aid after this last shot, and having to keep a tight lid on how it affects me in case of passing it on to others, it seems likely that I'll again be looking at ways to end the suffering and burden before too long.

I daren't hope for this to go ok, I've been let down far too many times and can't bear to go through all that again. Much rather be fully prepared for disappointment than blindsided by it.

I've felt n said this all along, and please forgive the drama once again, but I don't think I was ever meant to be here anyway. Life has always been fraught with calamity; people always think the worst of me despite my efforts to be good and honest and kind; whenever I gain control of the things that I can have influence over, something that I have no chance of changing always swoops in to ruin things; I've tried so hard for so long yet still I don't appear to have either any credibility nor any use at this point.

It's all very depressing

Bloody hell that was a bit of a rant, apologies- bet you wish you never asked now

 

[Red]

While waiting for the specialist follow up, had yet another infuriating encounter with a GP today while trying to navigate something simple.

They just don't listen!!

So damn sick of doctors at this point, if I never see one again it'll be too soon…
After this round of investigations I'm done, never again to see one of my own free will. I just can't deal with the conceited, patronising fuckers anymore.

Hope is waning rapidly.

It's now been over five years of one invalidation after another; yet one piece of lazy, general advice after another; shunted from pillar to post, each group palming me off to another as quick as they can while doing as little as possible. I've gone through various NHS "specialists" (and at times I have to use that term VERY loosely, as shown by the "endometriosis specialist" who had never even heard of adenomyosis) and have paid thousands of pounds to see private doctors who, it seems, are mostly just as jaded and dismissive as those in the NHS.

Daren't hope for anything from this latest thing. Won't even consider it until we're in the hospital talking to him in a few weeks. Better to go in already floorwards to lessen the fall. Go in hopeful, come out not only devastated but also feeling tiny, stupid and damn near invisible. And still unwell to boot lol

Any accurate diagnosis would be acceptable at this point, absolutely anything; just to name my captor and torturer, to see its face would give me the strength to rally up and fight back! Give me a name to curse and a face to punch!!

But as it stands, I'm just flailing in the dark at an unknown assailant. Others see me fighting thin air, clutching at my wounds, restrained and burdened by invisible weights and ropes. My tormentor leaves behind many clues yet nobody seems inclined to take a look close enough to piece them together.
Too time consuming, it's not worth the resources.

It's just so goddamn tiring.
Not just normal tired, not only exhausted, not even that severe fatigue on the days when it's a struggle to even go to the bathroom, let alone do anything else. It's a deep, lead-heavy weariness that has a profound, cumulative impact. Every day a few more stones are added to the backpack and the straps appear to be sewn to my shoulders.

To lie down, set down that backpack and then join it in the cool, soft mud, never to rise again, sounds like utter bliss.

 

[sufferingalways]

I think the medical invalidation is very common with women.

I often regret how much I've talked about past depression, anxiety, ect. since now any physical symptom I have is related to that. Sleep problems? Take antidepressants. Pain? Take antidepressants, pain is common in depression. Just get on antidepressants and it will basically cure everything.

I've had this weird, random horrible back pain since I was a teen. I was 31 when a physicians assistant asked, "Has anyone ever told you that you have scoliosis?" Anyone else I mentioned this too just said it was probably depression pains. All those years of people saying "why would your back hurt, you don't even do anything" to finally find out I had a back issue lol.

Is there any way to go to a new clinic that doesn't have your information about your past mental health? I think you can refuse to fax your history over, right?

Hello there, yes i believe you can ask for a second opinion and at a different clinic/ doctors/ hospital etc. Surely you can ask the "data protection / and patient confidentiality to be respected" when you seek different medical opinion?

Have i got the phrase correct?

The waves keep trying to close over my head. Trying so hard to be grateful n thankful for the things I do have but this one thing is so all encompassing that it's so hard right now.

Things to be thankful for:
My husband, to whom I have never felt closer due to extra work we have put into our marriage lately.
My loving son and beautiful cats.
My wonderful grandmother and one sibling of five who actually appears to give a shit about me.
Toxic people removed from life, peace has followed and it's fantastic!
Being financially stable, despite being unable to work (thanks to husband).
Nice place to live.

I feel like the rest of life is pretty much made (at least a damn sight better than it's ever been before!) but it's just this damn physical shit that is weighing me down; the constant pain, fatigue and subsequent invalidation by the medical people (I refuse to say "professional" at this point) who can't be arsed to delve deeper than surface tests for common ailments, preferring to imply mental illness instead…

It just doesn't ring true. Believe me, I've considered it multiple times over these last few years and it just doesn't tally.

Have a last chance hope but again daren't hope too much for fear of disappointment. Got appt with spinal specialist towards the end of next month to try to find the cause of the worst of my pains. Rave reviews, seems to know his shit and does both proper tests and treatments, only using surgery as last resort.

Going in expecting defeat before we even start; stolidly posting this in recovery because accurate diagnosis and treatment is the first outcome I desperately want, however by now that seems like much too tall an order for what my life is willing to provide lol I'd easily settle for the much more realistic wish of a definite end to all of it.

Have the symptoms evaporate (much too big a wish for the likes of me!), never to see a doctor again, or just kaput; bosh, gone forever, never to be a burden to anyone ever again.

It just irks me that out of all the possibilities that could occur for my situation, I'm left with the most distressing one; suffering without knowing what it is or anyone really believing me. Literally any other outcome would be acceptable yet the single one that is unbearable is the way that it is.

Living for nearly 40 years without emotional validation has taught me not to seek it and to reply on myself, but how are you supposed to cope with medical invalidation and gaslighting?? We rely on these people to help us but really they don't give a shit. It's so demoralising.

Rant over.
Thanks for reading.
Sorry to dump my handbag out on your metaphorical laps, especially as I've been so quiet lately. Not feeling strong enough to attempt much.

Just so tired.

Hello i can understand your pain from how medicine people treat you. I had a care coordinator who was anything but. She worked for th local CMHT (Community Mental Health Team) but was unhelpful in her attitude when she bothered to come, and later libelled me. When my sleep cycle/ health improve i hope to have the brain function to resume with the Advocate in challenging her claims, including one that referred to local police and housing (????).
Considering there's been nothing of the sort i will be interested in the "evidence" her now former employers come up with.

My GP laughed at me when I told him that I suffer from suicidal thoughts, this was in 2017. Needless to say I won't see him again (can't see any currently due to years of sleep deprivation having caused a horrible messed up sleep cycle).

You're not alone. Big hugs x ️

 

[Hollowillow]

The waves keep trying to close over my head. Trying so hard to be grateful n thankful for the things I do have but this one thing is so all encompassing that it's so hard right now.

Things to be thankful for:
My husband, to whom I have never felt closer due to extra work we have put into our marriage lately.
My loving son and beautiful cats.
My wonderful grandmother and one sibling of five who actually appears to give a shit about me.
Toxic people removed from life, peace has followed and it's fantastic!
Being financially stable, despite being unable to work (thanks to husband).
Nice place to live.

I feel like the rest of life is pretty much made (at least a damn sight better than it's ever been before!) but it's just this damn physical shit that is weighing me down; the constant pain, fatigue and subsequent invalidation by the medical people (I refuse to say "professional" at this point) who can't be arsed to delve deeper than surface tests for common ailments, preferring to imply mental illness instead…

It just doesn't ring true. Believe me, I've considered it multiple times over these last few years and it just doesn't tally.

Have a last chance hope but again daren't hope too much for fear of disappointment. Got appt with spinal specialist towards the end of next month to try to find the cause of the worst of my pains. Rave reviews, seems to know his shit and does both proper tests and treatments, only using surgery as last resort.

Going in expecting defeat before we even start; stolidly posting this in recovery because accurate diagnosis and treatment is the first outcome I desperately want, however by now that seems like much too tall an order for what my life is willing to provide lol I'd easily settle for the much more realistic wish of a definite end to all of it.

Have the symptoms evaporate (much too big a wish for the likes of me!), never to see a doctor again, or just kaput; bosh, gone forever, never to be a burden to anyone ever again.

It just irks me that out of all the possibilities that could occur for my situation, I'm left with the most distressing one; suffering without knowing what it is or anyone really believing me. Literally any other outcome would be acceptable yet the single one that is unbearable is the way that it is.

Living for nearly 40 years without emotional validation has taught me not to seek it and to reply on myself, but how are you supposed to cope with medical invalidation and gaslighting?? We rely on these people to help us but really they don't give a shit. It's so demoralising.

Rant over.
Thanks for reading.
Sorry to dump my handbag out on your metaphorical laps, especially as I've been so quiet lately. Not feeling strong enough to attempt much.

Just so tired.

My reason to die. Im all alone all i have is gaslight

Nutritional deficiencies? Allergies? Chemicals. Laundry detergent & cleaners can mess up someone. I cleaned with a weird vinegar mix, now i twist in agony with stabbing pains. It might have melted my acryluc bath just enough to poison me... Acid chemicals can destroy nerves... B vitamin used to help but unable to remove the chemical. Bought new clothes but a bath is torture

 

[Red]

After the MRI I had a few weeks ago, they called me back to have another with contrast. No idea why but that's another £100 down the drain! Add that to the £250 consultation fee n poof, all disposable income for the month gone.

Follow up with consultant on Friday afternoon… trying hard to manage expectations, making myself expect a big fat nothing even after all this.

But that pesky bit inside is still hoping so hard that I know I will still be disappointed when the time comes.

The only thing I can think of is to get the doc to examine my lymph nodes, to feel the difference between the soft, moveable ones and the firmer, fixed nodes that are not as they should be. Ask him to feed that back to my GP. But he prolly won't listen anyway.

It's all going to be for nothing, I know it. A thousand pounds down (when we can't really afford it) and the rise and fall of hope just to feel invalidated yet again; I can't do this anymore, I just can't.

Sucks to live life like this, reliving the same story over n over again. Something is desperately wrong, I try to rectify it, unable to tackle it alone and in dire need of assistance; nobody listens. Then it's too late n everyone is like, you should have SAID.

I DID FUCKING SAY.

You die how you live I guess lol

 

[Red]

I have had similar symptoms for almost three years. Same thing with doctors. Only got ultrasound of painful armpits because I have dense breast tissue. They refused otherwise. I have three enlarged nodes on one side but not indicating cancer as they are healthy anatomically just enlarged. i have a source online who isn't a doctor but helped me and gave information on reactive nodes. I also have itching and the alcohol will make the nodes hurt. Doc mentioned possible rheumatic issue but no other info. Doctors have been telling me to fuck off for years now. They don't want to do the investigation. GP didn't even palpate my nodes. I had to go to another doc and ask them specifically to do it. You can pm me about it if you want. i had seen a surgeon and he said wait three months and ultrasound again. They are still anatomically healthy but enlarged. He said I do not need a biopsy and that would cause more harm than good. I also get pain in inguinal nodes occasionally. I have been to obgyn, urogyn, surgeon, two gps, asked my gastro doc, urologist, asked my cardio doc. None of them know what to do or what the cause is. Frustrating is not a strong enough word. I have been berated as well by a friend saying I am a hypochondriac and should trust the doctors. It's so invalidating and hurtful. I just cry a lot.

Sucks right?

I'd be ok if it were just the nodes (some of which are definitely not just reactive - some are rubbery and moveable like reactive nodes but others are fixed and matting together) but the constitutional symptoms just won't let up. Night sweats, chills and such profound fatigue that I've actually considered pissing my pants rather than trek across the hallway to the bathroom.

I get that these are "nonspecific" symptoms but I also have a skin rash on my hands and hypopigmented patches on my face that could easily be puzzled out with a simple biopsy. As it stands the NHS dermatologist just gave me anti fungal and steroid creams to smear on them both and discharged me instantly, not even a follow up.

The worst part is pain in my spine, it is far worse than any other I've encountered and I had endometriosis for almost two decades and also gave birth. Hurts all the time, not just when moving, not alleviated by any posture changes and it kicks up so many notches at night that I have to take morphine.

Given up now. Spinal specialist says I have spinal osteoarthritis but the the pain I get is lower and far away from any joint. He offered me a procedure that costs nearly 3 grand; can't afford that until the new year at least and I think that won't help as it's purely for the joint that shows arthritic changes, well away from ground zero.

Will avoid doctors from now on, not going to any on them willingly from this point onwards. After seeing around ten different GPs and over thirty different consultants over 5 years, being treated like I'm an idiot, hypochondriac or scammer by every single one of them, I'm done with the health system and only hope that this is an indolent malignancy that transforms into something more aggressive, that it finally grants both my ticket out of this shit show and an opportunity for my husband to sue to pay for my funeral so he's not out of pocket.

Just seems awful that you can ask for help so many times from so many people, with legitimate cause as it took my life from me in one fell swoop, and be so callously turned away again and again. I had just begun to accept that it happens emotionally as this has been the way it's gone my whole life but I never thought it would happen with physical issues too.

People suck and can't be trusted to even do the jobs for which they are paid, let alone give a crap about anyone.

I'm done. Next time I get more conventionally ill I'm going to have to be unconscious before I go to see another doctor again. Fuck em.

I'm really sorry you are struggling too, I hope that your fight is different to mine. Big hugs

 

[Red]

Bless you it sounds like you're pretty much in the same position as me with all this! I'm sorry for your pain and invalidation, and honestly if this man in your life was any good at all he wouldn't talk to you like that. I wouldn't stand for it and have cut out people with similar attitudes with no hesitation. There are better people out there to associate with. I'd rather associate with no one than being anywhere near them.

I've done tons of research and think it's either autoimmune, vascular or some kind of malignancy. I can't muster the energy to go into detail about my ailments and really can't be bothered to try anymore for a while lol thank you for your offer to help but I'm done with it for now, at least until I've some distance from all this trauma and the situation becomes dire enough to prompt me to start searching for answers again.

I've accepted this as my normal for now, and will continue trying to live this quasi-life using various coping mechanisms to get through the minutes, hours, days etc. I take as little prescribed medication as I can to get by (it's a constant state of pain but I'm somewhat accustomed to it now); stores of stronger meds beat it back a little when it goes crazy (despite dipping into them from time to time these stores are growing and may be where I turn for my ticket out should I finally give up on everything for good). Energy comes from illicit sources and while this isn't ideal, it's a life of sorts and I'm prepared to coast along this way until something significant changes. Or I need to stop the ride n get off.

Kinda detached and disassociated from the whole thing right now, my mind skirts along the edges of the problem and only does enough to get me by short term. Autopiloting through each day, trying to do enough to feel like I've done something, anything to justify my existence.

The whole "diagnosis odyssey" is more than exhausting, I'm utterly drained by this alone - added to the illness itself, it's devastating. I feel like a husk of a person and for now can't engage in trying to puzzle it out. It's like having my hands burnt again and again, sores on top of sores, and trying to find the will to plunge my hands into the fire once again. I just can't. Too hurt right now, too disappointed and discouraged.

I hope you find answers soon. It's a hard slog trying to just live with this crap, to be invalidated on top of it is torture.

 

[Hollowillow]

It's never auto immune. Grains cause inflamation in everyone.

Eating the standart diet with a multivitamin... Not good enough to cure illness.

Every bite must be the foods highest in vitamin c and b. Greens and meat. No chemicals.

I take 4000 mg of vitamin C a day as bare minimum. I can get 20000mg. 20 pills of 1g in a day. Check how much you get in that multivitamin. You can't rebuild cartillages, spines, the heart muscles with that.

Anemia can be caused by a lack of b vitamins, and vitamin c is necessary to absorb iron. They gave me iron supplements it never worked. Taking vitamin b & c made me run in circle in my kitchen the first time I took some.

Read about adrenal fatigue. The symptoms of deficiency of vitamin c, b, magnesium and others. Mega doses of vitamins by andrew saul. Gerson therapy to cure cancer.

If you think a white toast, coffee, multivitamin & alcohol can sustain a life & rebuild a broken body... A healthy diet is just corpirate advertisement for junk food. Don't force exercise. Ban abusers

After the way doctors treated you for 5 years your adrenals are definetly burned out, depleted of vitamin c, b, magnesium. They will cannibalise your flesh to find the nutrients to burn energy & function. That's why coffee cause heart attacks. It forces the body to go faster than what it can survive without burning out & wasting away. Polar bears sleep in winter to avoid wasting energy when there isn't food.

It might not matter what you have. If you give your body the right mayerials ti heal, in enough quantity, and get rid of poisons... It will heal. Even cancer. Even mental distress. It can heal the brain. I got hit by a car...

Doctors were useless for me too... So I went into the extreme to compensate for decades of anorexia. I developped myscles jyst by increasing vitamin c, you can't store that in fat.

Sugar can cause reactive hypoglycemia. I get a manic high, a depressed crash, and can feel like a truck hit me.

I have to relax constantly.

It worked for a while but now I can't remove the poison from my home and got too many physical traumas and mental torture...

My point is... Yes... Mega doses of nutrition can heal. A multivitamin is a drop in a desert.

Buy vitamin c. Take 1g (1000mg) every houes or 30 minutes. When you go poop soft stuff... You reached bowel tolerance. When I'm suicidal I can take 15000 easily. I regretted 40000 but took them way too fast. I usually take between 2 and 5 pills at once.

I still use it for pain. If I cry hysterically from pain I take extra with magnesium. B vitamins help nerves and energy. A whole B complex by itself and extra b12.

A shit ton. While resting to avoid wasting them on burning energy instead of healing.

If you suspect cancer try a biopsy, but chemo causes cancer...

The medical industry are sadistic and stupid.

At least vitamins will give you more energy to cope with doctor bullshit. But it seems like a waste of money. Brain scans can't even detect my concussion. Pamper yourself with your lover. Ditch those jerks. Read about adrenal fatigue and the book doctor yourself. Movies hungry for change and food matters.

I eat junk now. But I gave up... If you didn't... Try extreme self care. EXTREEEEEME.

Which includes sitting on your ass all day stuffing your face with greens like a cow. This heals. It's the opposite of what we're told to do.

 

[Red]

It's never auto immune. Grains cause inflamation in everyone.

Eating the standart diet with a multivitamin... Not good enough to cure illness.

Every bite must be the foods highest in vitamin c and b. Greens and meat. No chemicals.

I take 4000 mg of vitamin C a day as bare minimum. I can get 20000mg. 20 pills of 1g in a day. Check how much you get in that multivitamin. You can't rebuild cartillages, spines, the heart muscles with that.

Anemia can be caused by a lack of b vitamins, and vitamin c is necessary to absorb iron. They gave me iron supplements it never worked. Taking vitamin b & c made me run in circle in my kitchen the first time I took some.

Read about adrenal fatigue. The symptoms of deficiency of vitamin c, b, magnesium and others. Mega doses of vitamins by andrew saul. Gerson therapy to cure cancer.

If you think a white toast, coffee, multivitamin & alcohol can sustain a life & rebuild a broken body... A healthy diet is just corpirate advertisement for junk food. Don't force exercise. Ban abusers

After the way doctors treated you for 5 years your adrenals are definetly burned out, depleted of vitamin c, b, magnesium. They will cannibalise your flesh to find the nutrients to burn energy & function. That's why coffee cause heart attacks. It forces the body to go faster than what it can survive without burning out & wasting away. Polar bears sleep in winter to avoid wasting energy when there isn't food.

It might not matter what you have. If you give your body the right mayerials ti heal, in enough quantity, and get rid of poisons... It will heal. Even cancer. Even mental distress. It can heal the brain. I got hit by a car...

Doctors were useless for me too... So I went into the extreme to compensate for decades of anorexia. I developped myscles jyst by increasing vitamin c, you can't store that in fat.

Sugar can cause reactive hypoglycemia. I get a manic high, a depressed crash, and can feel like a truck hit me.

I have to relax constantly.

It worked for a while but now I can't remove the poison from my home and got too many physical traumas and mental torture...

My point is... Yes... Mega doses of nutrition can heal. A multivitamin is a drop in a desert.

Buy vitamin c. Take 1g (1000mg) every houes or 30 minutes. When you go poop soft stuff... You reached bowel tolerance. When I'm suicidal I can take 15000 easily. I regretted 40000 but took them way too fast. I usually take between 2 and 5 pills at once.

I still use it for pain. If I cry hysterically from pain I take extra with magnesium. B vitamins help nerves and energy. A whole B complex by itself and extra b12.

A shit ton. While resting to avoid wasting them on burning energy instead of healing.

If you suspect cancer try a biopsy, but chemo causes cancer...

The medical industry are sadistic and stupid.

At least vitamins will give you more energy to cope with doctor bullshit. But it seems like a waste of money. Brain scans can't even detect my concussion. Pamper yourself with your lover. Ditch those jerks. Read about adrenal fatigue and the book doctor yourself. Movies hungry for change and food matters.

I eat junk now. But I gave up... If you didn't... Try extreme self care. EXTREEEEEME.

Which includes sitting on your ass all day stuffing your face with greens like a cow. This heals. It's the opposite of what we're told to do.

I don't do grains, take multivitamin with all B vits n C every day. Nothing processed, other than protein powder. Magnesium supplement every day.

Can't biopsy myself dude lol n really can't be arsed to rally back against many of the other things you said there…

If it worked so well for you, why did you give up? Sounds like utter butt talk