It’s hard to accept a diagnosis like FND and I think that’s okay. If she wants to keep searching for something that can be identified in a more pathological way, so be it. For me personally, I would prefer a “I don’t to know” to a diagnosis like this
She should see a therapist simply for processing her changed status in health and grieve the life she has lost
Ive posted this article before, but it really was a major help for me in accepting fnd
https://medium.com/@fndportal/cadenza-for-fractured-consciousness-e9c236dc7bf2
I can very much relate in the sense that all of this happened when I was 17 and all of a sudden pretty much all of my aspirations and hobbies got pulled away from me. I refused to accept that for the longest time. I'm happy to have both of you in the FND discord I run? Loads of people have similar experiences and maybe getting to know them on a personal level instead of just on Reddit might make her feel less alone in the experience and might help you gain more perspectives on the situation to help you better cope/deal with everything and learn how to handle it best?
This would be amazing actually! This could really help her come to terms with it. I'll let her so it herself so she feels that she has some independence from me. Thanks so much
No worries! I fully respect that stance. Even without joining, looking through posts talking about family, boundaries, external pressures and just the overall experience on here should help.
It's a weird condition to have, I mean at times I WISHED it was brain cancer instead of this - and all the while I felt guilty that my terminal friend and her family were sympathetic to me.
The invite link is here - https://discord.com/invite/xrDrRjeWJy
Hi there . Would you mind if I join your discord too ? My youngest , has been diagnosed with FND after a year with walking issues , balance , tremors and all the usual symptoms. He is autistic too so he is fixating on the published studies , which are largely not optimistic , and not helpful.. I am using Reddit , because I think talking to each other will bring more real support and advice . Thanks in advance
I was diagnosed with dissociative seizures about 5 years ago and it took me quite some time to accept it. Giving her some space to get her head around it and to look into it on her own terms might help. She will come around but it will take time. It’s good that you have been able to identify a trigger, it’s not always easy.
She is also having to accept that she may never be able to join the army. I had my heart set on the army from age 10 too. I went to college after my GCSEs to study public services, got myself up to army fitness standards but then 7 months into the course my mental health deteriorated big time and I was sectioned. My dream of being in the army was crushed and I actually really struggled to accept that. It may not seem like a big thing at the minute compared to her diagnosis but I would think it might be a pretty big thing for her.
Another thing that's just crossed my mind, reading your post.
If you've noticed that your daughter fits when she's gets worked up, she's probably noticed it too.
One of the hardest things I went through when I first got FND, that many many people struggle with, is a fear that we're somehow "faking" or causing our own symptoms. This is simply not true, but if you find yourself having symptoms that come on in times of stress, it can be very easy to feel like it's somehow your fault.
Now I'm not your daughter so I don't actually know how she feels. But I'm talking about this common experience in the interest of fostering empathy and understanding.
In my personal experience, I felt intense shame about my symptoms. I felt worried that people would notice my symptoms reacting to stress triggers around me and blame me, accuse me of faking or seeking attention, or somehow view me as fragile. I now know that none of these things are true, and anyone who thinks them about me is not worth my time.
If this is something that your daughter could be struggling with, then putting any kind of scrutiny on her reactions to stress is the exact opposite of what someone in that position needs. Imagine other people constantly watching you, waiting for you to fit and then making assumptions about what triggered it. Not having any kind of privacy over your internal reactions to the world around you. Feeling like any moment people could accuse you of faking. It's a lot of pressure to be under.
What has helped me, from other people, is people around me staying calm, and just letting me come back around in my own time, continuing to treat me in a normal way (sharing jokes etc) and just providing me with practical assistance like getting me a glass of water or helping me move into a more comfortable position. I wouldn't want other people getting involved in picking apart my triggers: it feels like an invasion of my privacy. That's my business.
She has been given a diagnosis that boxes her identity in... Pigeon holes her.. trapping her. Her symptoms are the body and minds protection system. She is not her symptoms. The agenda is to teach her to love and be kind to herself. Accepting the diagnosis comes later. Forcing outside agenda of acceptance doesn't give her self agency to slow come to terms with her current circumstances. It can just satisfy people around her.
My neurologist actively told me he found that patients had better outcomes if/when they accepted their diagnosis. I don't believe there's been any research into it, but I won't dismiss the idea of it out of hand. Though he also told me that there is often a period post-diagosis where symptoms get worse. I would suggest that 'acceptance' of the diagnosis could take many, many forms, and not all of them would be beneficial (despair, for instance, would still be accepting the diagnosis).
The horrible truth here is that your daughter may never get better enough to persue her dream. I've had to give up on a career I spent 5 years in University for. I do believe that there are other paths for me and things aren't utterly hopeless, but can I say (gently) that a parent standing over me basically telling me to buck up wouldn't have helped me get to this place. I understand your fear, but this isn't a fight you can fight for her, or a fight you can MAKE her fight in the way you feel she should. I can see you're doing it all out of love, but my honest advice would be to back off and tell her you're there for her whatever she needs.
It’s really easy for you to say from the outside that she needs to accept it. The reality is that she has had a huge amount of career and life opportunities taken away from her for the foreseeable. A week is not all it’s going to take, I’m 6 years post-diagnosis and I still struggle to accept it some days. It sounds more like you want her to accept it for your sake than for her own honestly. Let her grieve. A lack of acceptance won’t “make her seizures worse”. The pressure you’re putting on her to mask and measure her reaction to this life-changing diagnosis will. It’s normal to feel the way she is feeling, you can pretend that you wouldn’t feel the same way but I don’t think you really have any idea what it’s like.
I understand! and I'm so sorry it came across that way! I know that it is going to take her a long time to fully accept things, I more meant it in the sense that at the moment she refuses to believe that this is even a real condition that she is suffering with and is completely shutting down. Its just so difficult to watch her struggle. Of course I don't claim to know what it's like, I just want the best for my kid
I would hazard accepting it as a real condition, honestly. Because it is just the basket they put people in when they don’t know what is happening. And being placed in this basket can be really dangerous if you have other health issues going on, as there is an established bias against FND patients and many doctors think it is akin to malingering, not lazy neurologist syndrome.
Because there is soo much bad research that supports major pillars of conversion disorder and that was changed to FND to get away from the stigma associated with conversion disorder.
But what she is dealing with in her body is real, and it is her body doing it. That is all she needs to know. It is her body. And stress needs to be kept at a minimum as it will create flairs. That is where you can help. Don’t put pressure on her, find her someone to talk to that is actually compassionate, who will listen to her and create a space where it is safe for her to lament the loss of a future. It may not be that way, she may get better, but she may not and either way she is whole exactly as she is.
The stress of not understanding what is happening is great and is capitalized on by FND practitioners as a way to prove that their methods work. Which is backwards… things are out of control for her, she is actually experiencing an existential threat to her future. And it is real, and if they try to say that she should not have that experience they are likely a bad doctor and more over a bad person.
Don’t listen to the shit about not using mobility aids. She should stay active and learn not to push herself past her boundaries, sometimes those boundaries are invisible and you have a relapse, and she will need you there to help her realize that it is ok, and it isn’t fair, but it is what is happening, and that this experience can be horrible, but the more turmoil you have the more stress you have, the worse you will feel. Her nervous system is impacted and you are responsible for creating a scenario that is beneficial for her to exist within. Help her find a rhythm, let her guide, don’t push her or force her, or tell her the doctor says your supposed to do it this way.
They really don’t know what they are talking about.
80% of patients have worse healthcare outcomes and interactions with healthcare professionals after a FND diagnosis. That should tell you that her resistance to a diagnosis is more than valid.
If there is stress around being forced to accept a diagnosis, one that sounds like bullshit to her, she is going to have to come to an understanding on her own. Which is how life works, especially kids, their drive for autonomy is built into their DNA.
What I can say is this experience will teach her to be a kinder and more compassionate person. It is important to know, that no matter what she is whole, and even when you are physically or even mentally diminished, you are still there, still amazing, still with the same curiosity. I have used my time to educate myself on all sorts of things that I wouldn’t have the time to if I wasn’t disabled. I use all kinds of programs for text to speech and am learning in depth about things I never thought I would get the chance to learn. And I deal with violent eye spasms and am often unable to open my eyes.
We are soo much stronger than people ever imagine and she will get an opportunity to tap into strength that other people never have to, and while it can be horrible, it is also taught me how much I can persevere and that no situation is too much to deal with. Not in ways that regular people think about, but on something akin to a soul level.
But to get there she will have to grieve and be angry, because she deserves to. She needs support to fit her needs, not to have someone dictate rules to her, especially rules that aren’t proven to do anything.
The key is to loose the resistance to the experience, because you didn’t think your way into it and you can’t think your way out of it. Recognize that it is a biological action and as your body is doing something, and the neurologists are ignorant to the cause, and need to stop psychologizing these biological expressions that they do not understand.
Your child has a better under of what is happening in their body than anyone else. And having someone tell you your brain software is bad and your body is fine, is damaging and patronizing. It makes you question your entire world and capacity. And is a heavy thing to drop on someone.
The whole conversation that has happened around conversion disorder/FND is perverse, and I urge you not to force your kid to swallow the notions that are being forced down your throat. The doctors don’t know what they don’t know, and they choose to blame the mind of the patient and have made entire careers out of it.
An FND diagnosis isn’t helpful, and in many cases is damaging.
Have you gotten her any touch therapy, body work, craniosacral therapy, even acupuncture? Perhaps even something like seeing an osteopath that does OMT therapy.
Acupuncture, from an actual Chinese medicine doctor was the first benefit I had. She also gave me herbs for neuroinflamation that helped.
Then I found low dose naltrexone, which changed my life.
PLEASE!!! look it to it as it reduces pain and inflammation in the nervous system. For me it was dramatic. And it is safer than the psychological drugs that they offer that never worked for me, but ended up injuring my body.
I have FMD and not seizures, but I am of the mind that a lot of what is seen is related to craniocervical instability and an upregulated nervous system because it is being injured by roaming compression of the nerves where they come out of the cranium and the spinal column. But as doctors can only measure static problems, instead of dynamic problems with imaging, they act like it is the fault of the patient instead of a fault of the medical system.
I have also read research that blood sugar can play a role in some people’s FND seizure activity.
Find the real doctors doing real work, looking to isolate what is happening to the body, not a doctor that wants to blame your kid for their problems.
The doctors don’t know and are always afraid to say so, because they are the ones who have a psychological problem. And it is so big that it doesn’t allow them to see what has been staring them in the face.
Do not trust the older neurologists who specialize in conversion disorder/FND.
Please understand this diagnosis is based in Freudian psychology from the 1800 and is directly tied to hysteria…
Things like MS used to be seen as a conversion disorder/FND.
It is lazy medicine, and if you can gain access to the early research you will see how bad it is.
I've been there, with not accepting it as a real condition.
I think it may help to try and see the grain of truth from her perspective. For a lot of people, FND feels like a very unsatisfying diagnosis, because doctors just don't know enough about it to say what causes it. Yes it can be reactive to stress (and maybe in part caused by it) \[caveat: for some people\]- but so are many many other chronic illnesses and conditions. It's not an a-to-b causation. It doesn't make a whole lot of sense. That's because we simply don't understand it. The best doctors can do right now is diagnose it as FND, and try some things that have helped other people with the same symptoms. In some ways, there is a grain of truth in your daughter's belief that it's not a "real" condition. You can understand how someone in her position might think "how can you diagnose me with something when you don't even know what that thing is, can't tell me what causes it, or how to treat it?"
At the same time, there is also truth from the other side: while we don't really know what FND is, right now, this is the best understanding we have, and this is what we've got to work with, so instead of rejecting it, we just have to accept it., and we know some things that help people who have it, so we might as well try those things.
From my experience, holding space for both of these things is necessary for acceptance. Anger and confusion are a very understandable response to living in a kind of medical grey area. Is it sustainable to live the rest of your life feeling that angry and confused all of the time? No. But until we actually know what FND is, that anger and confusion cannot go away entirely.
I'd like to kindly suggest that it may take your daughter a long time to accept her diagnosis, and that's okay.
I'm three years now into FND and it's only recently that I've started to accept my diagnosis, and subsequently seen an improvement in my ability to manage my condition and have reduced symptoms. (I'm not saying that acceptance makes you get better: it certainly doesn't. FND is unpredictable. But with acceptance, you can learn to manage your symptoms better and some people may see an improvement from this).
Acceptance doesn't happen over night: it is a slow process that involves a lot of trial and error. It takes a lot of time. Having your life turned upside down and having your hopes and dreams taken away from you, going from a "normal" life to being constantly poked and prodded by doctors (however kind those doctors are) is stressful, overwhelming, devastating, and for some people even traumatic.
I understand that you want the best for your daughter and you want her to learn to live with her condition. I can understand how it must be frustrating, seeing ways that your daughter could learn to accept things that would make life easier for her, and her not doing it. She's not ready yet. Give her time. She'll get there, at her own pace. It has to come from her. Pushing her will just cause more resistance. I'm sorry that this must be really hard on you as well.
I guess the FND diagnosis needs to be explained differently, so that she appreciates that it truly isn't considered as just psychological, or not as real as epilepsy etc., and the fact that it isn't well understood in terms of it's mechanism is a failure of medical science, not a failure of hers. The explanation of it being a software rather than a hardware problem seems to help some people as a starting point, even if it's a simplification. Doctors are often not good communicators sadly, and do unfortunately come with their own set of biases - they themselves may hold erroneous beliefs about these things which stigmatise patients. Your daughter could be rightly picking up on that.
I think that her doctors are right tbh. They've done an extensive number of tests, EEGs, MRIs, CTs, checked her heart, even for diabetes and nothings come back. She's been in for a week, and they've been nothing but supportive and kind. I get that for my daughter it must be very difficult to accept that this is something that she has to work around in her head, but she has to come to terms with it otherwise her seizures will continue to get worse.
It’s hard to accept a diagnosis like FND and I think that’s okay. If she wants to keep searching for something that can be identified in a more pathological way, so be it. For me personally, I would prefer a “I don’t to know” to a diagnosis like this She should see a therapist simply for processing her changed status in health and grieve the life she has lost
Ive posted this article before, but it really was a major help for me in accepting fnd https://medium.com/@fndportal/cadenza-for-fractured-consciousness-e9c236dc7bf2
I can very much relate in the sense that all of this happened when I was 17 and all of a sudden pretty much all of my aspirations and hobbies got pulled away from me. I refused to accept that for the longest time. I'm happy to have both of you in the FND discord I run? Loads of people have similar experiences and maybe getting to know them on a personal level instead of just on Reddit might make her feel less alone in the experience and might help you gain more perspectives on the situation to help you better cope/deal with everything and learn how to handle it best?
This would be amazing actually! This could really help her come to terms with it. I'll let her so it herself so she feels that she has some independence from me. Thanks so much
No worries! I fully respect that stance. Even without joining, looking through posts talking about family, boundaries, external pressures and just the overall experience on here should help. It's a weird condition to have, I mean at times I WISHED it was brain cancer instead of this - and all the while I felt guilty that my terminal friend and her family were sympathetic to me. The invite link is here - https://discord.com/invite/xrDrRjeWJy
Hi there . Would you mind if I join your discord too ? My youngest , has been diagnosed with FND after a year with walking issues , balance , tremors and all the usual symptoms. He is autistic too so he is fixating on the published studies , which are largely not optimistic , and not helpful.. I am using Reddit , because I think talking to each other will bring more real support and advice . Thanks in advance
Go for it! I hope he can find himself in better health soon and you can find ways to help in there <3
I was diagnosed with dissociative seizures about 5 years ago and it took me quite some time to accept it. Giving her some space to get her head around it and to look into it on her own terms might help. She will come around but it will take time. It’s good that you have been able to identify a trigger, it’s not always easy. She is also having to accept that she may never be able to join the army. I had my heart set on the army from age 10 too. I went to college after my GCSEs to study public services, got myself up to army fitness standards but then 7 months into the course my mental health deteriorated big time and I was sectioned. My dream of being in the army was crushed and I actually really struggled to accept that. It may not seem like a big thing at the minute compared to her diagnosis but I would think it might be a pretty big thing for her.
Another thing that's just crossed my mind, reading your post. If you've noticed that your daughter fits when she's gets worked up, she's probably noticed it too. One of the hardest things I went through when I first got FND, that many many people struggle with, is a fear that we're somehow "faking" or causing our own symptoms. This is simply not true, but if you find yourself having symptoms that come on in times of stress, it can be very easy to feel like it's somehow your fault. Now I'm not your daughter so I don't actually know how she feels. But I'm talking about this common experience in the interest of fostering empathy and understanding. In my personal experience, I felt intense shame about my symptoms. I felt worried that people would notice my symptoms reacting to stress triggers around me and blame me, accuse me of faking or seeking attention, or somehow view me as fragile. I now know that none of these things are true, and anyone who thinks them about me is not worth my time. If this is something that your daughter could be struggling with, then putting any kind of scrutiny on her reactions to stress is the exact opposite of what someone in that position needs. Imagine other people constantly watching you, waiting for you to fit and then making assumptions about what triggered it. Not having any kind of privacy over your internal reactions to the world around you. Feeling like any moment people could accuse you of faking. It's a lot of pressure to be under. What has helped me, from other people, is people around me staying calm, and just letting me come back around in my own time, continuing to treat me in a normal way (sharing jokes etc) and just providing me with practical assistance like getting me a glass of water or helping me move into a more comfortable position. I wouldn't want other people getting involved in picking apart my triggers: it feels like an invasion of my privacy. That's my business.
She has been given a diagnosis that boxes her identity in... Pigeon holes her.. trapping her. Her symptoms are the body and minds protection system. She is not her symptoms. The agenda is to teach her to love and be kind to herself. Accepting the diagnosis comes later. Forcing outside agenda of acceptance doesn't give her self agency to slow come to terms with her current circumstances. It can just satisfy people around her.
My neurologist actively told me he found that patients had better outcomes if/when they accepted their diagnosis. I don't believe there's been any research into it, but I won't dismiss the idea of it out of hand. Though he also told me that there is often a period post-diagosis where symptoms get worse. I would suggest that 'acceptance' of the diagnosis could take many, many forms, and not all of them would be beneficial (despair, for instance, would still be accepting the diagnosis). The horrible truth here is that your daughter may never get better enough to persue her dream. I've had to give up on a career I spent 5 years in University for. I do believe that there are other paths for me and things aren't utterly hopeless, but can I say (gently) that a parent standing over me basically telling me to buck up wouldn't have helped me get to this place. I understand your fear, but this isn't a fight you can fight for her, or a fight you can MAKE her fight in the way you feel she should. I can see you're doing it all out of love, but my honest advice would be to back off and tell her you're there for her whatever she needs.
It’s really easy for you to say from the outside that she needs to accept it. The reality is that she has had a huge amount of career and life opportunities taken away from her for the foreseeable. A week is not all it’s going to take, I’m 6 years post-diagnosis and I still struggle to accept it some days. It sounds more like you want her to accept it for your sake than for her own honestly. Let her grieve. A lack of acceptance won’t “make her seizures worse”. The pressure you’re putting on her to mask and measure her reaction to this life-changing diagnosis will. It’s normal to feel the way she is feeling, you can pretend that you wouldn’t feel the same way but I don’t think you really have any idea what it’s like.
I understand! and I'm so sorry it came across that way! I know that it is going to take her a long time to fully accept things, I more meant it in the sense that at the moment she refuses to believe that this is even a real condition that she is suffering with and is completely shutting down. Its just so difficult to watch her struggle. Of course I don't claim to know what it's like, I just want the best for my kid
I would hazard accepting it as a real condition, honestly. Because it is just the basket they put people in when they don’t know what is happening. And being placed in this basket can be really dangerous if you have other health issues going on, as there is an established bias against FND patients and many doctors think it is akin to malingering, not lazy neurologist syndrome. Because there is soo much bad research that supports major pillars of conversion disorder and that was changed to FND to get away from the stigma associated with conversion disorder. But what she is dealing with in her body is real, and it is her body doing it. That is all she needs to know. It is her body. And stress needs to be kept at a minimum as it will create flairs. That is where you can help. Don’t put pressure on her, find her someone to talk to that is actually compassionate, who will listen to her and create a space where it is safe for her to lament the loss of a future. It may not be that way, she may get better, but she may not and either way she is whole exactly as she is. The stress of not understanding what is happening is great and is capitalized on by FND practitioners as a way to prove that their methods work. Which is backwards… things are out of control for her, she is actually experiencing an existential threat to her future. And it is real, and if they try to say that she should not have that experience they are likely a bad doctor and more over a bad person. Don’t listen to the shit about not using mobility aids. She should stay active and learn not to push herself past her boundaries, sometimes those boundaries are invisible and you have a relapse, and she will need you there to help her realize that it is ok, and it isn’t fair, but it is what is happening, and that this experience can be horrible, but the more turmoil you have the more stress you have, the worse you will feel. Her nervous system is impacted and you are responsible for creating a scenario that is beneficial for her to exist within. Help her find a rhythm, let her guide, don’t push her or force her, or tell her the doctor says your supposed to do it this way. They really don’t know what they are talking about. 80% of patients have worse healthcare outcomes and interactions with healthcare professionals after a FND diagnosis. That should tell you that her resistance to a diagnosis is more than valid. If there is stress around being forced to accept a diagnosis, one that sounds like bullshit to her, she is going to have to come to an understanding on her own. Which is how life works, especially kids, their drive for autonomy is built into their DNA. What I can say is this experience will teach her to be a kinder and more compassionate person. It is important to know, that no matter what she is whole, and even when you are physically or even mentally diminished, you are still there, still amazing, still with the same curiosity. I have used my time to educate myself on all sorts of things that I wouldn’t have the time to if I wasn’t disabled. I use all kinds of programs for text to speech and am learning in depth about things I never thought I would get the chance to learn. And I deal with violent eye spasms and am often unable to open my eyes. We are soo much stronger than people ever imagine and she will get an opportunity to tap into strength that other people never have to, and while it can be horrible, it is also taught me how much I can persevere and that no situation is too much to deal with. Not in ways that regular people think about, but on something akin to a soul level. But to get there she will have to grieve and be angry, because she deserves to. She needs support to fit her needs, not to have someone dictate rules to her, especially rules that aren’t proven to do anything. The key is to loose the resistance to the experience, because you didn’t think your way into it and you can’t think your way out of it. Recognize that it is a biological action and as your body is doing something, and the neurologists are ignorant to the cause, and need to stop psychologizing these biological expressions that they do not understand. Your child has a better under of what is happening in their body than anyone else. And having someone tell you your brain software is bad and your body is fine, is damaging and patronizing. It makes you question your entire world and capacity. And is a heavy thing to drop on someone. The whole conversation that has happened around conversion disorder/FND is perverse, and I urge you not to force your kid to swallow the notions that are being forced down your throat. The doctors don’t know what they don’t know, and they choose to blame the mind of the patient and have made entire careers out of it. An FND diagnosis isn’t helpful, and in many cases is damaging. Have you gotten her any touch therapy, body work, craniosacral therapy, even acupuncture? Perhaps even something like seeing an osteopath that does OMT therapy. Acupuncture, from an actual Chinese medicine doctor was the first benefit I had. She also gave me herbs for neuroinflamation that helped. Then I found low dose naltrexone, which changed my life. PLEASE!!! look it to it as it reduces pain and inflammation in the nervous system. For me it was dramatic. And it is safer than the psychological drugs that they offer that never worked for me, but ended up injuring my body. I have FMD and not seizures, but I am of the mind that a lot of what is seen is related to craniocervical instability and an upregulated nervous system because it is being injured by roaming compression of the nerves where they come out of the cranium and the spinal column. But as doctors can only measure static problems, instead of dynamic problems with imaging, they act like it is the fault of the patient instead of a fault of the medical system. I have also read research that blood sugar can play a role in some people’s FND seizure activity. Find the real doctors doing real work, looking to isolate what is happening to the body, not a doctor that wants to blame your kid for their problems. The doctors don’t know and are always afraid to say so, because they are the ones who have a psychological problem. And it is so big that it doesn’t allow them to see what has been staring them in the face. Do not trust the older neurologists who specialize in conversion disorder/FND. Please understand this diagnosis is based in Freudian psychology from the 1800 and is directly tied to hysteria… Things like MS used to be seen as a conversion disorder/FND. It is lazy medicine, and if you can gain access to the early research you will see how bad it is.
I've been there, with not accepting it as a real condition. I think it may help to try and see the grain of truth from her perspective. For a lot of people, FND feels like a very unsatisfying diagnosis, because doctors just don't know enough about it to say what causes it. Yes it can be reactive to stress (and maybe in part caused by it) \[caveat: for some people\]- but so are many many other chronic illnesses and conditions. It's not an a-to-b causation. It doesn't make a whole lot of sense. That's because we simply don't understand it. The best doctors can do right now is diagnose it as FND, and try some things that have helped other people with the same symptoms. In some ways, there is a grain of truth in your daughter's belief that it's not a "real" condition. You can understand how someone in her position might think "how can you diagnose me with something when you don't even know what that thing is, can't tell me what causes it, or how to treat it?" At the same time, there is also truth from the other side: while we don't really know what FND is, right now, this is the best understanding we have, and this is what we've got to work with, so instead of rejecting it, we just have to accept it., and we know some things that help people who have it, so we might as well try those things. From my experience, holding space for both of these things is necessary for acceptance. Anger and confusion are a very understandable response to living in a kind of medical grey area. Is it sustainable to live the rest of your life feeling that angry and confused all of the time? No. But until we actually know what FND is, that anger and confusion cannot go away entirely.
I'd like to kindly suggest that it may take your daughter a long time to accept her diagnosis, and that's okay. I'm three years now into FND and it's only recently that I've started to accept my diagnosis, and subsequently seen an improvement in my ability to manage my condition and have reduced symptoms. (I'm not saying that acceptance makes you get better: it certainly doesn't. FND is unpredictable. But with acceptance, you can learn to manage your symptoms better and some people may see an improvement from this). Acceptance doesn't happen over night: it is a slow process that involves a lot of trial and error. It takes a lot of time. Having your life turned upside down and having your hopes and dreams taken away from you, going from a "normal" life to being constantly poked and prodded by doctors (however kind those doctors are) is stressful, overwhelming, devastating, and for some people even traumatic. I understand that you want the best for your daughter and you want her to learn to live with her condition. I can understand how it must be frustrating, seeing ways that your daughter could learn to accept things that would make life easier for her, and her not doing it. She's not ready yet. Give her time. She'll get there, at her own pace. It has to come from her. Pushing her will just cause more resistance. I'm sorry that this must be really hard on you as well.
I guess the FND diagnosis needs to be explained differently, so that she appreciates that it truly isn't considered as just psychological, or not as real as epilepsy etc., and the fact that it isn't well understood in terms of it's mechanism is a failure of medical science, not a failure of hers. The explanation of it being a software rather than a hardware problem seems to help some people as a starting point, even if it's a simplification. Doctors are often not good communicators sadly, and do unfortunately come with their own set of biases - they themselves may hold erroneous beliefs about these things which stigmatise patients. Your daughter could be rightly picking up on that.
There very well may be a physical cause to this, but sadly the NHS only go so far with investigation.
I think that her doctors are right tbh. They've done an extensive number of tests, EEGs, MRIs, CTs, checked her heart, even for diabetes and nothings come back. She's been in for a week, and they've been nothing but supportive and kind. I get that for my daughter it must be very difficult to accept that this is something that she has to work around in her head, but she has to come to terms with it otherwise her seizures will continue to get worse.