How do you recover from the trauma of systemic disbelief?

I don't even "understand" my sick self when I'm healthy. I have to concentrate and visualize to recall my feelings and struggles. Given that, I can't really expect people to understand and empathetic to my struggles. The best I can hope for, I concluded, that people understand it intellectually, not necessarily emotionally, and make practical allowances for me. And most people do. At least those who respect you do. Those who dismiss your struggle are probably not worthy of your relation anyway.

It's sort of like the Privilege of the Oppressed. The disadvantaged people understand both the disadvantaged and the privileged, so they can do something about it. The privileged, on the other hand, can't do anything about it since they don't understand the disadvantaged. As long as people take your word for it without being dismissive, that should be enough with or without emotional empathy or support.
 
I don't think I'll ever be able to fully trust anyone again. I don't really think of it as trauma, just as an adaptation to lived experience, a "fool me twice..." thing. I have seen how institutions deserve no trust, how they fail people in absurd ways. How easily people will screw others, sometimes simply out of convenience.

But the personal trust will be even harder. I'm thankful to have loving parents who support me. I don't know how much time they have left, and that genuinely terrifies me, as I know that I won't get the support I need after. I have a sister but she's struggling with her own health problems and isn't the organized type. I'll mostly be on my own in a few years. I'm 42, and I don't think I'll make it past 50, it doesn't even seem worth it unless there's a radical change.

Over the years I stopped communicating with old friends and family. Most of the time I wasn't even able to, but regaining a bit of function these few years have made it clear how no one gets it, and it's not even close. I just have nothing in common with people who can live a normal life. They live in a different universe than my own.

A year ago, my ex contacted me out of the blue. We broke up because of my illness in 2014. She wanted to help. She did. A lot. We rekindled, fell madly in love again. Talked every night, sometimes for hours. Even though I was barely coherent. She researched everything about ME. We made plans to sort it out, to do whatever was necessary. I went out of the house for the first time in years. I was still miserable, but it was all OK now.

I thought she understood it well enough to accept me. Intellectually I think she did. But that's not the same as living with someone, as a person with emotional needs, especially given how important communication is to it, and how I'm so impaired in it. We talked seriously about marriage, made plans to live together. It only lasted a few weeks. We don't speak anymore. She did make a few efforts to keep in touch, but it was... hollow. She had obviously completely fell out of love with me. Again. There clearly was nothing left here. Just a few weeks is all it took.

I don't know what to think of it. I'm too different from my normal self. I know that. I said so, but I don't think it sunk in. But it seemed like we had something real. We really make a great match, true soul mates. But it just broke so quickly and it all feels like a lie now. Even though I know it's not. But I can't tell the difference between yesterday, a month ago, or a decade ago. The only thing that feels like it happened is the deep sorrow it left.

As long as I'm ill, I know I can't connect with anyone. It just breaks. If I somehow get better, by chance, not from an effective treatment, I don't even know what I'd do, knowing that it could all fall apart again so easily. I don't think I could take it, trust someone only to be let down again.

Even if there's a real after, with a cure that makes this all over for good, I don't think I'll ever really trust anyone again. Not like I used to. I know how selfish people are, and how illness just breaks all the things that make meaningful connections with other people break.

I really don't think of it as trauma. I'm just more cynical, and expect people to disappoint. It rarely fails me, even though I'm still fortunate to have loving parents who have never failed me. But I saw how all relations, even in love, are really for mutual benefit. "Love" as is romanticized is a bunch of nothing. People love one another for the things they bring to each other. Once you stop being able to bring other people good things, they usually do the same. They leave. It's all so... transactional. We're still just a bunch of animals in the end.
 
oldtimer said:
Until recently there was not single person I know who would accept ME. I decided it was all too hard and cut ties with the only friend I had who talks about mind/body stuff all the time and was impressed when she did the Lightning process years ago before I had ever heard of it.

When I was first diagnosed in the mid 1990s, my family and friends decided that I actually had Borderline Personality Disorder despite the fact that I don't come close to ticking a single one of those boxes. They also labelled me with OCD because apparently I put plastic bags over things on the top shelf in the kitchen. This was quite a long time before everyone started realizing it would be wise to re-use plastic so I would occasionally wash them to be used again. My son only asked me about this recently, 30 years after they 'diagnosed' me. He looked suitably embarrassed as we looked up at the small plastic bag hanging over the radio antenna to dry:rolleyes:

Not long ago, and with trepidation, I brought up my ME and FM diagnosis with my GP of 20 years. I didn't know what she thought but at least she didn't roll her eyes. Now her husband, also a GP, has long covid and is severely restricted in his work and life. Recently she discussed it with me as someone who would understand so I now know there is one person who will take me seriously.

Not long after that I visited my dermatologist for some rosacea follow up. He decided that I have neurogenic rosacea (some redness that can be controlled with a laser in my case but burning is my main symptom) and somehow the topic of other symptoms came up. I took the plunge and mentioned FM, PN and general pain and he nodded a lot in understanding. Apparently he sees a few new rosacea patients each year who describe the same things as I did. There was absolutely no indication that he thought any of it was in any way psychogenic although he suggested very low dose amitryptaline because he said, although it doesn't decrease pain, it seems to make the sensation of it a bit less intense. I might get around to it - again.

I don't think I will ever trust people with any of this information. I've been through enough disbelief and actual ridicule and I'm fortunate enough to be moderately, not severely, affected so I can cover it up and appear 'normal' if I have to.
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"Personality Disorder" was on my medical record from a different health system in 2005! I just discovered it and got my GP to delete it.

I guess when the MD got overwhelmed by the patient (me), he gave her a PD diagnosis:
Avoidant? No. Paranoid? No, Histrionic? Well, I do love using words. OCD PD? No.

Ah, must be the dread Borderline Personality Disorder for when you show your FM distress, lol!
 
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rvallee said:
I don't think I'll ever be able to fully trust anyone again. I don't really think of it as trauma, just as an adaptation to lived experience, a "fool me twice..." thing. I have seen how institutions deserve no trust, how they fail people in absurd ways. How easily people will screw others, sometimes simply out of convenience.

But the personal trust will be even harder. I'm thankful to have loving parents who support me. I don't know how much time they have left, and that genuinely terrifies me, as I know that I won't get the support I need after. I have a sister but she's struggling with her own health problems and isn't the organized type. I'll mostly be on my own in a few years. I'm 42, and I don't think I'll make it past 50, it doesn't even seem worth it unless there's a radical change.

Over the years I stopped communicating with old friends and family. Most of the time I wasn't even able to, but regaining a bit of function these few years have made it clear how no one gets it, and it's not even close. I just have nothing in common with people who can live a normal life. They live in a different universe than my own.

A year ago, my ex contacted me out of the blue. We broke up because of my illness in 2014. She wanted to help. She did. A lot. We rekindled, fell madly in love again. Talked every night, sometimes for hours. Even though I was barely coherent. She researched everything about ME. We made plans to sort it out, to do whatever was necessary. I went out of the house for the first time in years. I was still miserable, but it was all OK now.

I thought she understood it well enough to accept me. Intellectually I think she did. But that's not the same as living with someone, as a person with emotional needs, especially given how important communication is to it, and how I'm so impaired in it. We talked seriously about marriage, made plans to live together. It only lasted a few weeks. We don't speak anymore. She did make a few efforts to keep in touch, but it was... hollow. She had obviously completely fell out of love with me. Again. There clearly was nothing left here. Just a few weeks is all it took.

I don't know what to think of it. I'm too different from my normal self. I know that. I said so, but I don't think it sunk in. But it seemed like we had something real. We really make a great match, true soul mates. But it just broke so quickly and it all feels like a lie now. Even though I know it's not. But I can't tell the difference between yesterday, a month ago, or a decade ago. The only thing that feels like it happened is the deep sorrow it left.

As long as I'm ill, I know I can't connect with anyone. It just breaks. If I somehow get better, by chance, not from an effective treatment, I don't even know what I'd do, knowing that it could all fall apart again so easily. I don't think I could take it, trust someone only to be let down again.

Even if there's a real after, with a cure that makes this all over for good, I don't think I'll ever really trust anyone again. Not like I used to. I know how selfish people are, and how illness just breaks all the things that make meaningful connections with other people break.

I really don't think of it as trauma. I'm just more cynical, and expect people to disappoint. It rarely fails me, even though I'm still fortunate to have loving parents who have never failed me. But I saw how all relations, even in love, are really for mutual benefit. "Love" as is romanticized is a bunch of nothing. People love one another for the things they bring to each other. Once you stop being able to bring other people good things, they usually do the same. They leave. It's all so... transactional. We're still just a bunch of animals in the end.
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Thank you for sharing your story. Xx
 
rvallee said:
I don't think I'll ever be able to fully trust anyone again. I don't really think of it as trauma, just as an adaptation to lived experience, a "fool me twice..." thing. I have seen how institutions deserve no trust, how they fail people in absurd ways. How easily people will screw others, sometimes simply out of convenience.

As long as I'm ill, I know I can't connect with anyone. It just breaks. If I somehow get better, by chance, not from an effective treatment, I don't even know what I'd do, knowing that it could all fall apart again so easily. I don't think I could take it, trust someone only to be let down again.

Even if there's a real after, with a cure that makes this all over for good, I don't think I'll ever really trust anyone again. Not like I used to. I know how selfish people are, and how illness just breaks all the things that make meaningful connections with other people break.

I really don't think of it as trauma. I'm just more cynical, and expect people to disappoint. It rarely fails me, even though I'm still fortunate to have loving parents who have never failed me. But I saw how all relations, even in love, are really for mutual benefit. "Love" as is romanticized is a bunch of nothing. People love one another for the things they bring to each other. Once you stop being able to bring other people good things, they usually do the same. They leave. It's all so... transactional. We're still just a bunch of animals in the end.
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Thank you for writing this post. I really relate to this and exactly describes my experience as well. I feel less alone reading this and some other responses here. Love to all. x
 
I think that the world is made up of many different types of people. So although there are going to be people who will judge you and think badly of ME, there will be others who won’t (and of those, there will be some who understand more or less immediately, and others for whom it will take time, but once they get there, it’ll be wonderful). And you won’t know which one they are unless you give them a chance. Which I know is really hard when you’ve gone through the trauma of living with the illness & being hurt.

Of my friends, I have some friends who stopped talking to me altogether when I got ill. I had friends who said such horrible things. And I didn’t expect it of them. But I also had friends (much fewer in number, but they exist), who stuck by me, accepted what I’m saying without question, and to this day they remain my friends.

I was in a relationship when I got ill, and I’m still with that same person. And even if, for whatever reason we do not remain together. I would always measure who comes after, by the actions of my current partner. Because he shows that people do exist who will accept me and my illness - who can cope with it enough to stay, even once they know all the scary and the hard parts of it. I’m not saying he’s perfect or that we don’t have arguments, because we definitely do! But I trusted him with it all (I had to), and in the end he accepted me as I am, and he expected nothing in return. I couldn’t do or even say much, especially during my most severest days when I could not do much of anything at all - and that went on for many years. There was no change in his willingness or need to want to help. And on my better days, he doesn’t expect any more even if I’m feeling better.

You said that you find it hard to trust someone unless they show empathy and understanding of ME. Thats understandable and fine, as long as you allow them time to work through that understanding and empathy. Because like Kitty says, sometimes that understanding doesn’t come straight away & it takes time to develop. Especially in intimate relationships.

I just think that if one person I know could do all that.. so could other people. It means there are other people like that out there. And it could be the new people you have been meeting! You can’t really know unless you give them a chance to show you who they are. I know that since you’ve been hurt and living with trauma, it’s so hard to do that, but these people do exist.

It is the same with therapists. You won’t know how they are with you, unless you give them a chance. Therapists are taught not to judge / jump to conclusions and to fully explore how an illness feels for you and what happens to you… if they don’t do that, they’re not a good therapist.

I know all of this is easier said than done. And it doesn’t negate all of the most difficult and awful experiences that chronically ill people have experienced. But I truly believe there are good people out there, maybe it’s harder to find them and a lot of people show their true colours when we become unwell, or when they hear you’re unwell.. but the good ones are still there. I hear about them, selfless partners and really kind and loving people, people who stay and people who care, in chronic illness circles quite a bit. :)
 
lunarainbows said:
I think that the world is made up of many different types of people. So although there are going to be people who will judge you and think badly of ME, there will be others who won’t (and of those, there will be some who understand more or less immediately, and others for whom it will take time, but once they get there, it’ll be wonderful). And you won’t know which one they are unless you give them a chance. Which I know is really hard when you’ve gone through the trauma of living with the illness & being hurt.

Of my friends, I have some friends who stopped talking to me altogether when I got ill. I had friends who said such horrible things. And I didn’t expect it of them. But I also had friends (much fewer in number, but they exist), who stuck by me, accepted what I’m saying without question, and to this day they remain my friends.

I was in a relationship when I got ill, and I’m still with that same person. And even if, for whatever reason we do not remain together. I would always measure who comes after, by the actions of my current partner. Because he shows that people do exist who will accept me and my illness - who can cope with it enough to stay, even once they know all the scary and the hard parts of it. I’m not saying he’s perfect or that we don’t have arguments, because we definitely do! But I trusted him with it all (I had to), and in the end he accepted me as I am, and he expected nothing in return. I couldn’t do or even say much, especially during my most severest days when I could not do much of anything at all - and that went on for many years. There was no change in his willingness or need to want to help. And on my better days, he doesn’t expect any more even if I’m feeling better.

You said that you find it hard to trust someone unless they show empathy and understanding of ME. Thats understandable and fine, as long as you allow them time to work through that understanding and empathy. Because like Kitty says, sometimes that understanding doesn’t come straight away & it takes time to develop. Especially in intimate relationships.

I just think that if one person I know could do all that.. so could other people. It means there are other people like that out there. And it could be the new people you have been meeting! You can’t really know unless you give them a chance to show you who they are. I know that since you’ve been hurt and living with trauma, it’s so hard to do that, but these people do exist.

It is the same with therapists. You won’t know how they are with you, unless you give them a chance. Therapists are taught not to judge / jump to conclusions and to fully explore how an illness feels for you and what happens to you… if they don’t do that, they’re not a good therapist.

I know all of this is easier said than done. And it doesn’t negate all of the most difficult and awful experiences that chronically ill people have experienced. But I truly believe there are good people out there, maybe it’s harder to find them and a lot of people show their true colours when we become unwell, or when they hear you’re unwell.. but the good ones are still there. I hear about them, selfless partners and really kind and loving people, people who stay and people who care, in chronic illness circles quite a bit. :)
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Second all of this.
If you’re well enough to spend time with people and get to know them find out what shared interests you have, what is important to them and to talk about what’s important to you too, sooner or later you’ll really connect with some of them.
 
I don't know if I can move past it. I have a supportive partner, parents and a few good friends who've stuck by me. A lot of people bailed or ghosted me when I got sick. Some cared but stopped checking in when it became clear I wouldn't recover.

But the gaslighting. I avoid speaking to doctors unless i absolutely have to. I have currently avoided getting some cysts checked out (im prone to them but location and quantity of discovered ones are a little concerning).

I can't forget or forgive the doctors who gaslit me as I desperately tried to soldier on with life. I was mild enough that pacing could have given me a very full life for someone with ME. They took away my knowledge of what was wrong with me. No one believed my experience of my symtoms. Few believed my reports of worsening.


I can see now my GP was following a playbook of don't diagnose don't medicalise. I think he was out of his depth but we have a ME service in this county that teaches pacing (largely safely although a little pacing up nonsense) and diagnoses. He had an opportunity to refer me there and he didnt and gaslit me instead. I told him (and other docs) over and over that I had had depression for a decade and knew the difference. He persuaded me otherwise and now my life is over. How can that be forgiven, especially after discovering the BPS dogma he was quoting?

Disbelief is corrosive and contagious. Belief in psychosomatic illness is the real social contagion.

How to move past all the smug doctors telling me I was in good health when I was feeling like shit. The doctor who told me to take antidepressants because my symtoms could well be caused by depression and anxiety
when I came down with long covid and was deteriorating rapidly. No idea.

I regularly say now fuck the NHS. And i mean it with the same vehemence someone might say fuck the police. The NHS has been so poisoned by BPS dogma its as bad as the Met and racism, for example. It needs systemic retraining against doing this to patients with serious legal and professional consequences for those who do.
 
V.R.T. said:
Belief in psychosomatic illness is the real social contagion.
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+1.

I think that psychosomatics, broadly defined as the belief in mind over matter, is the most insidious and destructive false idea of them all.

In no small part because everybody, understandably, wants it to be true, and it manifests itself in myriad forms.

But it is false. We are finite. We have very limited control over the world and our own lives and bodies. We all age, get sick, decay, and ultimately die. Indeed, death is the ultimate disproof of mind over matter.
V.R.T. said:
It needs systemic retraining against doing this to patients with serious legal and professional consequences for those who do.
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And a bunch of certain senior people sacked, pronto, without any face saving politics. Just told to pack their bags, sod off, never show their faces again, and be very grateful that is all that is going to happen to them.
 
Sean said:
I think that psychosomatics, broadly defined as the belief in mind over matter, is the most insidious and destructive false idea of them all.

In no small part because everybody, understandably, wants it to be true, and it manifests itself in myriad forms.

But it is false. We are finite. We have very limited control over the world and our own lives and bodies. We all age, get sick, decay, and ultimately die. Indeed, death is the ultimate disproof of mind over matter.
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A science youtuber made a video recently, "How I lost trust in scientists". It overlaps a lot with what we discuss here (in general), and is really about the idea that people shouldn't be trusted, only reliable data, science and logic matter. In the video the presenter uses the example of ESP and other kooky paranormal stuff that was super popular in the early 20th century, so much that it was discussed and researched as a serious matter.

To me the common beliefs about pla/nocebo, mind-body and all this jazz is the modern equivalent. It's just as empty, and it's believed just as strongly in the general public, but has managed to capture academics as well. It's far more destructive and nefarious. It's probably one of the most dangerous ideas in history, in my opinion a top 10 most harmful ideologies ever put together. Precisely because it has completely captured the medical profession.

Which all makes it so much harder to dispel. ESP stuff was always relatively fringe, a fashionable idea but just that, an idea. Once it got debunked enough there was nothing to hang on to. Psychosomatic ideology is a giant industry, millions of egos made it a die they will let millions die on. I almost never see people skeptical about this. It's likely the most fashionable pseudoscience in history. It's really incredible.

I really don't know where they go from there. There's so much sunk cost here, literally tens of millions of lives, probably hundreds of millions. It's too big to fail.
 
"I really don't know where they go from there. There's so much sunk cost here, literally tens of millions of lives, probably hundreds of millions. It's too big to fail."

IT is failing big time but politics and spineless doctors will let it carry on without a single thought about the graveyards full of people betrayed by the medical and political professions.
 
V.R.T. said:
I regularly say now fuck the NHS.
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I can understand how you feel. But if the NHS collapses and we end up with a system like the Americans (God forbid) I'm still expecting the treatment to be just as bad. I don't know how many of the difficulties patients have are caused by the "system". I think the problems are mostly caused by the doctors and the way they are trained. And I've also been scowled at by plenty of nurses before they've even said a word to me, so the disbelief is contagious.
 
V.R.T. said:
I don't know if I can move past it. I have a supportive partner, parents and a few good friends who've stuck by me. A lot of people bailed or ghosted me when I got sick. Some cared but stopped checking in when it became clear I wouldn't recover.

But the gaslighting. I avoid speaking to doctors unless i absolutely have to. I have currently avoided getting some cysts checked out (im prone to them but location and quantity of discovered ones are a little concerning).

I can't forget or forgive the doctors who gaslit me as I desperately tried to soldier on with life. I was mild enough that pacing could have given me a very full life for someone with ME. They took away my knowledge of what was wrong with me. No one believed my experience of my symtoms. Few believed my reports of worsening.


I can see now my GP was following a playbook of don't diagnose don't medicalise. I think he was out of his depth but we have a ME service in this county that teaches pacing (largely safely although a little pacing up nonsense) and diagnoses. He had an opportunity to refer me there and he didnt and gaslit me instead. I told him (and other docs) over and over that I had had depression for a decade and knew the difference. He persuaded me otherwise and now my life is over. How can that be forgiven, especially after discovering the BPS dogma he was quoting?

Disbelief is corrosive and contagious. Belief in psychosomatic illness is the real social contagion.

How to move past all the smug doctors telling me I was in good health when I was feeling like shit. The doctor who told me to take antidepressants because my symtoms could well be caused by depression and anxiety
when I came down with long covid and was deteriorating rapidly. No idea.

I regularly say now fuck the NHS. And i mean it with the same vehemence someone might say fuck the police. The NHS has been so poisoned by BPS dogma its as bad as the Met and racism, for example. It needs systemic retraining against doing this to patients with serious legal and professional consequences for those who do.
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.

I feeling exactly the same. My o/h struggles to understand how it still burns me up or the trauma after effects. I've worked a lot on myself to accept things but this one is hard, it's the abuse of trust I think.
I did just manage one medical energency situation that was thanks to having a chaperone who's quite protective go with me which helped me feel safer and the fact that both I and the Dr very carefully sidestepped and skirted round any mention of ME whatsoever. It felt like an armed truce and a taboo subject. That's the first interaction with my surgery in quite some time.
 
Arnie Pye said:
I can understand how you feel. But if the NHS collapses and we end up with a system like the Americans (God forbid) I'm still expecting the treatment to be just as bad. I don't know how many of the difficulties patients have are caused by the "system". I think the problems are mostly caused by the doctors and the way they are trained. And I've also been scowled at by plenty of nurses before they've even said a word to me, so the disbelief is contagious.
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Doctors are trained by the system. The NHS is institutionally biased against pwME and other disorders they consider functional. Doctors are trained to gaslight and not medicalise. They are judged by their peers if they take us seriously.

The NHS is currently refusing to implement the NICE guidelines because they hate us so much they cannot believe that they cause us harm even after NICE ruled that they do. After the guideline ruling they put Simon fucking Wesseley on the NHS board of directors. It's not a few bad apples spoiling the barrel it's the system.

You could retrain these doctors, which should have happened immediately after the NICE guidelines. But no they stuck to buisiness as usual and will do until there is a legal precedent for them to enact change.

The American system is a nightmare but lets remember where the GET idelogy came from.

My life was destroyed by the prejudices inherant in this NHS. If there is an NHS in the future that treats us ALL with respect and compassion, and stops harming us and letting us die because of their pathological fear of medicalising a physiological illness, I will stop saying it.
 
The biggest issue and for me the hardest to overcome is the loss of trust, not just in the medical profession and health service, but also in all those who buy into the idea that you are a malingerer or in my case as a carer an utter fool for believing ME is a biological illness. It is a shock to find out just how many buy into the view (no matter what your previous standing in your family and community) that you are either a perceived malinger or a gullible stupid fool. Either way you just need a good kicking to put you right. First you try to appeal to reason and evidence, but come to realise that the only protection is to withdraw and once withdrawn it is very hard to willingly expose yourself to that unjustified and ignorant abuse again.

The Psychiatrist who provided the accepted ‘Expert’ Medical Report in support of my successful claim against my employer (who did not accept ME as real) advised me that it was clear that I had reached a point where the trust between myself and my Employer had irretrievably broken down and I would not feel safe working for them again as they had not taken the necessary care to protect my health in relation to my additional responsibilities of caring for my wife, a severe ME sufferer.

He further explained the ‘Psyche’ is just like any other organ of the body and it had been damaged by my Employers actions such that I would not be able to work at the same levels of responsibility again. His analogy (knowing I was keen on football), was to say that it was like a footballer suffering a serious injury which prevented the returning to their previous level of performance without risking further damage/failure to the same body part again.

There are therefore two issues, that I have had to adjust too. The loss of trust in others and the loss in my ability to cope with the level of ‘abuse’ which led to the loss of trust in the first place. I have found that I have not lost the ability to trust in most situations but that I am now much more wary of trusting indiscriminately ie other people have to show me they are trustworthy or not and my BS sensor is much more likely to be triggered earlier than before. This leads me to reject and withdraw more quickly than I did before, which has its benefits and disbenefits.

It is not easy, but I have found there are others out there with whom you can try to establish a relationship of trust and who will be more accepting of your difficulties. I can still ignore some disrespect towards me, if it is balanced by other important to me positives in the relationship.

I have found working hard on myself to accept and where possible even love the new ‘injured’ me for what I now am, does release me to at least explore the limits of the new boundaries rather than just shrinking away from life. Continuing to advocate and trying to raise awareness of the reality of ME following my Wife’s death is I think a reaction in me, partly driven by all that Gaslighting and the harm she and I as her carer suffered. I use it as some sort of motivation to take the risk of within new limits ‘trusting’ others again to see and respect the ‘real’ me.
 
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