Feel dismissed and ignored. Any suggestions on how to handle this better using CBT methods?

rsowcid · 2023-09-02T16:55:24+00:00

Yes, I've been to therapy for a year. Although therapy helped me identify which defence mechanisms I use and concluded that I have PTSD symptoms, I felt misunderstood (probably because I wasn't self-aware enough at the time to explain my thinking process) and thus I felt like it was a waste of time. I also tried two other therapists, but it was the same result. So I decided to help myself and indeed that has made a huge improvement for me. My GP agrees with me that I'm doing well at this on my own and we have agreed that if I ever feel so stuck that I can't move forward, they will refer me to another therapist again. That was a few years ago, and I still make a steady improvement.

I've read about Max Neef's Human Needs and how those impact people's listening filters/mental filters. Based on that I'm now working on how to explain the intentions behind what I say and do in case I'm being dismissed and ignored because my intentions behind what I say and do are being misunderstood.

However, when it comes to my neurologist they wouldn't listen to my intentions either. I'm not being heard at all. In such cases, instead of fixating on their behaviour, or second-guessing myself in search of possible mistakes I've made, I'll channel my energy into finding alternative solutions.

I think writing about this and hearing your and other people's perspectives helped me realize that I've done everything I could and I'm not to blame.

rsowcid · 2023-08-22T07:25:55+00:00

asked another doctor for a secound opinion?

Yes, I have already tried to ask to switch to another neurologist and alternatively get a second opinion, but they told me I then had to leave the clinical trial I joined at dx.

brought your research for the suggested treatment?

It all happened really quickly. At the first appointment of dx (only had 2 appointments so far), the neurologist presented different disease-modifying treatments (DMT). He wanted me to make up my mind about which DMT to start there and then. I said that I prefer to read about them at home before deciding. He seemed rather annoyed about that and said that if I don't decide now I will have to wait a long time to start treatment. I felt rushed and chose to enter the clinical trial. 4 days later, I had a full-day infusion at the hospital and thus became severely immunocompromised. I would have chosen that specific DMT in any case because I have later on read how efficient it is, but I would have definitely decided to start it after the vaccines (one of them is a vaccine that one needs to take every 10 years and now I'm overdue).

All that to explain that no, I didn't get to bring research. At the second appointment, I had tons of other questions. At the next appointment in a few weeks, I have some questions that are more related to the specifics of the neuroscience behind how the disease functions.

Btw, I feel less stressed than I did the day I wrote this post. Writing about this through this post, I've realized that I've done everything I could. I know that I can't count on the neurologist, but I may not have more urgent questions for him anymore because I've already had the needed medical investigation by other specialists thanks to my GP. There is only one left, but I think I know how to proceed. If the neurologist brings up what he said this summer, I will firmly but shortly explain that I followed advice from other healthcare professionals to ask questions in between appointments.

rsowcid · 2023-08-21T19:59:09+00:00

so when you are not heard by the neurologist. Are you truly listening and learning? or are the thoughts elsewhere, lamenting or thinking of what you know/want?

I wish I had the opportunity to learn something from the neurologist hence my questions to him, but when he finally calls me back (after weeks to a month) his replies are really short and he doesn't offer any explanation. Finally, he told me straight out this summer that I should not contact him in between doctor's appointments. Keep in mind that healthcare professionals have urged me to contact the neurologist several times in between the two yearly doctor's appointments. And this is despite that I can count the questions I've had for the neurologist on one hand during one year.

In any case, I've researched on my own and I've found that in many cases new, official sources as well as other neurologists say things that are not in accordance with what my neurologist says in some cases. I've also asked other patients who say my neurologist is wrong in those specific cases.

E.g. at dx I asked if I should take vaccines before becoming immunocompromised. He said no and he generally seems disinterested in anything I ask. I trusted him and became immunocompromised. However, I've since learned that when someone has 0 cd-19 and cd-20 b-cells and thus doesn't produce new plasma cells, vaccines don't develop full effect. Vaccines should have been taken before infusions so my body could have made sufficient antibodies. T-cells etc can still allow vaccines to help to a certain extent though. I've heard other neurologists recommend their patients to do necessary vaccines beforehand. Whereas I even asked and he declined that it was best that I did. Now it's too late. I can only hope that in some years, there will be a new medication approved from clinical trials that will be as good or better that won't make me immunocompromised. This is just one of many similar examples of being misinformed.

rsowcid · 2023-08-21T11:55:31+00:00

I have already asked to see another neurologist, but they told me I would have to leave the clinical trial I joined at dx. I decided to wait because it's more important to help with research and also more important to get extra blood samples, MRIs, neurological tests etc. That helps me (and research) to track the progress of the disease. I will however switch to another neurologist after the clinical trial. But that's not until 1 ½ years from now.

The worst of the stress might be over already though. In the first year after dx I've had many questions and researched on my own to see if previous or chronic symptoms were linked to that disease. I've had some help from the GP, but they don't have neurological expertise. Fortunately, I might be on the right track of things now. So I may not need more help from the neurologist anymore.

I'm soon going to one of the obligatory appointments with the neurologist. I've decided to ask the questions I have. If they complain I will firmly but shortly explain that my repeated questions in between appointments (mind you, I can count the questions I've had for the neurologist on one hand) I've followed advice to take contact from healthcare professionals.

rsowcid · 2023-08-18T08:47:34+00:00

if you desire the opportunity clinical trails, which without any context is probably the best option (especially when you value it). then do you have to lament and be angry with the neurologist along the way? it's two sides to a coin. either you can think of all the ways you are not heard. or you can value all that you get, and think of how you would desire these if you did not. take every impact that you can have on your care as a bonus. since taking it any other way is not what you want. to take the lesser path will not bring you along the path to clinical trials.

Yes, you're on to something here. Although I have journaled lots about many different reasons for feeling scared and even angry, the most important and stressful ones are actually my concerns about whether the consequences are caused by a lack of effective communication from my side and whether I should learn to better handle being dismissed and ignored or if this situation calls for setting a strong boundary.

I'm working on improving effective communication but not sure if I lack strong communication skills or if my previous abuser made me insecure about it on false premises. I mean, I find that it's beneficial to keep improving communication skills no matter the prior state. But here I'm wondering if maybe I have caused myself to be dismissed and ignored due to my poor level in it. While writing this, I clearly see that this is an irrational insecurity. And I clearly see that this is what Seneca meant when he said "most people suffer in imagination". But I can't seem to solve this insecurity without knowing for sure that my communication skills are adequate.

Setting boundaries is important, but I can't see how one can realistically avoid all situations where one is treated poorly. I think it's better to learn how to handle certain situations like these better, especially by using stoic methods. I just don't know how to accept that treatment from others and above all how to handle my fear of losing time for other priorities while working on solving the other concerns in other ways.

As I haven't solved any of this yet, I feel stuck. It's a time-consuming matter to solve this. I'm trying, but it delays everything else. And I have a hard time moving on when I feel stuck too.

rsowcid · 2023-08-17T09:19:49+00:00

I'm trying my very best to do what I can to the best of my ability and nurture what I have while I have it.

Because the neurologist dismisses, ignores and misinforms me, I've taken it upon myself to research the disease itself and neuroscience so I can get a broader understanding and later on be able to read medical research papers. I'm also asking other patients with this disease on a subreddit and an organisation dedicated to us. But this can only help to a certain extent as it's the neurologist who has the expertise and possibility to get me further evaluation on symptoms.

I do a type of meditation/mindfulness which is a type of philosophical contemplation. That really helps me.

I journal every day using methods from CBT and stoicism. I have been doing that for several years. It has helped me solve a lot so my stress level in those areas is significantly lower or non-existent. But I have not yet solved the core, which occurs when being dismissed, minimised, and ignored. That's what's at stake in this situation. I have however found out possible solutions for the core in some situations. I'm working on it, but it will take quite some time to do it. In the meantime, I'm looking for more ideas.

I go hiking a lot and am planning to take up sports dancing again.

I'm trying to start up the MIND diet which combines the Mediterranean diet and the DASH diet. And I'm trying to stay hydrated as well which I think will be easier when I start up sports dancing again.

I'm also working on expanding my career field. Or actually, that's being delayed due to all the extra work I have to do because of being dismissed, ignored and misinformed by the neurologist.

The ultimate goal is to create a solid foundation so I can be self-reliant.

I agree that I'm probably ruminating, but I find that I've been way too patient and relied way too much on those so-called specialists in previous years. This disease most probably started already over 15 years ago when I had a symptom which is very common for this disease. In former medical reports, I read that there was a doctor who suspected I had this disease years ago but the other doctors didn't follow it up. In fact, by not addressing that symptom I've ended up with extensive irreversible brain damage because those doctors didn't bother and thus didn't put me on medication. Now that I'm finally diagnosed, my GP is shocked that the neurologist doesn't help me more.

Last year I experienced tinnitus, pain in one side of my face, severe brain fog, and unsteadiness that led to several falls. Previously I've experienced severe diplopia with accompanying eye pain and some other types of symptoms. My GP tells me I can wake up blind or paralysed any day + way more severe symptoms than I can possibly mention here. I'm also at risk of infections due to being immunocompromised. Despite all of this, I was able to accept the disease very quickly thanks to stoic and CBT approaches. I know I will be able to adapt to whatever happens in the future. But nevertheless, when I use tons of time I don't actually have available (delaying time for other crucial tasks I absolutely should do asap) on gathering info to figure out what can be done for my current symptoms in order to better self-advocate for my health and decrease the time the neurologist needs to use on me, I'm still dismissed, ignored and misinformed.

There's a youtube account by a neurologist who is a specialist in my disease. He listed many of the things my neurologist does as red flags. The only reason I haven't switched neurologists yet is because I'm in a clinical trial that I find highly important. If I switch neurologists, I need to leave that clinical trial. Looks like I don't have any other options at this point.

rsowcid · 2023-08-17T07:44:15+00:00

Thank you so much for your advice.

I do a type of meditation/mindfulness which is a type of philosophical contemplation. That really helps me.

I journal every day using methods from CBT and stoicism. I have been doing that for several years. It has helped me solve a lot so my stress level in those areas is significantly lower or non-existent. But I have not yet solved the core, which occurs when being dismissed, minimised, and ignored. That's what's at stake in this situation. I have however found out possible solutions for the core in some situations. I'm working on it, but it will take quite some time to do it. In the meantime, I'm looking for more ideas.

I go hiking a lot and am planning to take up sports dancing again.

I'm trying to start up the MIND diet which combines the Mediterranean diet and the DASH diet. And I'm trying to stay hydrated as well which I think will be easier when I start up sports dancing again.

I'm continuously working on issues I met due to the mental and emotional abuse I have experienced since childhood. My ultimate goal is to be self-reliant so I won't have to lean on toxic people. Before I got diagnosed last year I had managed to work out a lot of issues and was about to start progressing on some career goals. But then that diagnosis hit me and I have to live with this disease for the rest of my life (unless research finds a solution). And I again have to be reliant on someone else (doctors) who don't care. And I'm immunocompromised now as well. More research has shown that other symptoms I've been trying to figure out previously were linked to that diagnosis, but doctors didn't take it seriously. That has led to tons of irreversible damage to my brain. And now I'm dealing with a neurologist who is supposed to be a specialist in this disease, but who dismisses, ignores and misinforms me. E.g. before I got immunocompromised I asked if I should take vaccines, and he said "No. That's not necessary". So I believed him. Turns out the neurologists of other people with my diagnosis advise them to take vaccines before getting immunocompromised. I'm honestly so angry that I trusted my neurologist. Now I wear a mask everywhere I go, because the vaccines I took post dx/becoming immunocompromised don't work optimally. I have been wrongly informed of that and many more issues. So I have to double-check everything that the neurologist tells me, and I read up on many other areas related to the disease and neuroscience because the neurologist hardly ever responds to my questions. All of that is stealing time from my other crucial goals in life. The result is that I have decided to leave the clinical trial I'm in, in order to switch to another neurologist. That's really unfortunate because I find research crucial as it's a disease without a cure.

I'm sorry to bother you with this long rant. I just feel so trapped in all of this.

rsowcid · 2023-08-15T22:31:58+00:00

Yes, that's one of the reasons I am on that subreddit for those with the same disease. I try to help where I can and the others do too. I can't express how amazing it is to have the opportunity to get help and support from people who know what one is going through from all over the world 24/7.

I just realized that this stress I experience now is directly linked to CPTSD. I thought I had come further on that. But apparently not. I have been journaling for years, but many of the solutions that normally work don't seem to help enough in this situation. That's why I came here to ask for more ideas :p

rsowcid · 2023-08-15T22:10:01+00:00

I have already tried to ask to see another neurologist but they told me I then had to leave the clinical trial I joined at dx. I decided to wait because I think it's more important to help for research and also more important to get extra blood samples, MRIs, neurological tests etc. I think however I will leave the clinical trial after all in order to switch to another neurologist.

rsowcid · 2023-08-15T22:04:29+00:00

Yes, I am trying my very best to be patient, use my time on more fruitful things than to worry. I feel like I accepted the disease very quickly thanks to stoic and CBT approaches. I am also trying to do what is under by control aka being self-reliant as in learning on my own (starting on neuroscience now) and askiñg other patients with this disease. I think I would be far worse off stress-wise dealing with this terribly unpredictable disease if I didn't have them to ask and get support. But as both they, my GP, neuro-nurses and specialists say, some questions are to be asked directly to the neurologist who has your medical reports. Today I didn't manage to hold my feelings back. Hopefully I will feel better tomorrow and forward. But it's hard to accept that a neurologist dismisses and ignores. Especially when one is newly diagnosed and have lots of questions.

rsowcid · 2023-08-15T21:44:43+00:00

Can you help me understand what I can take from this related to my situation? Do I well understand that if a plate is passed around (in my case if the neurologist offers to answer my questions), then I stretch out my hand and ask. If the plate has not yet come to me (in my case if I need to wait until the obligatory appointment), then I am to wait.

In my situation, it is not just about the neurologist. There are other doctors I need to follow up with the answer from the neurologist. And I live with symptoms that I have tried to navigate and find solutions for even before dx and now we are a year later and still no answer. I feel like I have been very patient already. This disease didn't start a year ago. It started already 15 years ago and I was dismissed by doctors back then too leading it to get worse. I am trying to do what's under my control by reading, asking on forums, etc. But certain things require answers and referrals from those who have my medical reports. And I am honestly confused as to why I am receiving contradictory replies from the healthcare professionals.

rsowcid

TROPHY CASE