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theredthread

How do you keep going with a dissociative disorder?

7 posts in this topic

Posted (edited)

Hi all,

I really don't like to moan but things are so bad and I just feel totally stuck...  severe depersonalisation/derealisation, with depression, extreme anxiety/panic and a fear of talking to people because of all this...

I've had to take baby steps but am trying so hard to do the right things. Problem is I'm so isolated, and although I'm eating well making sure I exercise enough (even though I often can't leave the house) I'm not sleeping, which then makes leaving the house and letting anyone see me go from excruitating difficult and stressful to impossible. I have little to spur me on to try anything new, especially seeing as my functioning is so bad that I can't ever seem to really get started.

It's really hell.  I receive outpatient treatment -- I'm lucky to receive it, but it's honestly not enough, and communicating my difficulties is so hard.

When I do go out a feel like a freak of nature.  People can often see that something is really up -- it's not something I can hide. I actually see people recoil because of how out of it I look.  I think they think I'm walking around whilst actively psychotic.

I don't understand how I'm not seen as serious enough to receive some kind of inpatient treatment.  I know this isn't usually the way with the conditions I suffer from, especailly when I haven't made a suicide attempt.  But I just can't think straight or find my way out of this at all.  I have one friend atm (that I mostly only speak to online) and I don't want to ruin it by putting any more stress onto him.  I can't think straight enough to fight for a change in treatment.  I know everything is going through similiar things here but in my day to day life I just feel so alone with it all.  It's literally hell even trying to get to appointment and I really cannot afford to miss anymore.

 

Just had to get it off my chest... :( so tired as well at the moment.

Edited by theredthread

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First off, that's great that you came here to ask for advice/help. Your situation sounds really tough, but coming here is a good first step. Next step I think is to get your basic human needs/basic functioning under control (eating, sleeping, showering, exercise) These things are crucial! Vitally important for mental health. You may have to depend on the help of your pdoc to get you on the right med regimen to achieve this...(I don't know if you are on meds?) Are you diagnosed with several disorders?

Do you see a Therapist? I think this step is also crucial to get better, especially if you are so debilitated by your conditions and I'm assuming you have few friends/family to talk to and express what you are feeling.

Lastly, can you ask your pdoc or therapist for group therapy geared toward people with dissociative disorders? It sounds like you could use some support from people that experience the same challenges. This could give you some insight, relief and hope that things will get better.

 

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Posted (edited)

Thank you so much for your response. :)  I'll have a better look at your reply when I've had a bit more sleep -- it sounds like very helpful advice though.

I am eating well and exercising -- despite pretty much being off my tree... I've been making a huge effort to do this.

I don't know how to improve the sleep atm, as I said, I'm doing all the right things (within limitations of course). I guess I could try and get sleeping pills.

I have massive reservations about being put on medications atm. I have been on so many before and it's made things wholeheartedly worse, not better.  I feel like after years of hell on lots of different things it's right for me personally to stay away from them. I know you could argue 'How could it be much worse?', but it can. I can't deal with strong side effects on top of all this.

I've been under the MH system for years, probably partly because of the dissociative disorder essentially going undetected, so think have exacerbated. But yes I have all these diagnoses -- they're all interlinked. As I haven't gone through anything that therapists accept as as trauma -- they are not treating my difficulties in that way. They say that I dissociate purely because of the anxiety levels. I do have a therapist -- but I don't know if she understands the extent of my difficulties.  I also dissociate so badly and am so anxious that I can barely communicate in sessions (and I need help to even get there). I actually think she thinks I'm a bit stupid even though I try to explain why I present the way I do.  I feel trapped under layers and layers of 'stuff', that's hiding who I actually am.

My current therapist just puts it all under one label: 'fear', though, and the obviously response to being really limited and having a worsened quality of life.  But yes, I've had these diagnoses for a long time.  I hesitate to add something else into the mix at this pointt, but I've recently been informally assessed for Aspergers as I was/a still pretty convinced that it's the root of a lot of my problems, anxiety disorders etc are often secondary conditions that people with aspergers are susecptible to for various reasons.

It's jsut all a big mess tbh. I've been treated for MH problems since childhood, though clearly nothing's got much better.  I feel like I need a mental health 'rehab clinic' or something. I am in contact with close family but can barely even socialise with them and it's just awful. The isolation worsens everything hugely, you're right - but I can't seem to get to a point where I can actually even speak to anyone.  I will look into a dissociative disorder group -- it's possible one exists here...

I work from home and study yfrom home -- it's obviously not ideal that my whole life is basically here but it's just the only way I can cope at all.

As I said, though, I will see what i can take from your post when i've managed to get a bit mroe sleep.  ANd sorry this is so long.

Thanks :)

Edited by theredthread

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I'm glad I could help (a least a little) I know what you mean being afraid of going on meds when you feel like you've tried them all, and all the side effects can be devastatingly worse than the MI itself.

I will have more of a think on your situation...it's a shame that you cannot find a professional that really "gets you" and tap into what is happening. I think in your case, feeling understood by someone could be very validating. Even if you have not had any specific trauma, maybe (since many of your symptoms come out as anxiety-dissociation) you could benefit from a therapist that specializes in dealing with PTSD or people with trauma-type or Aspergers symptoms? Perhaps there are more tools this kind of therapist could use that would be of more help/use to you, instead of just labeling you with a sort of generalized anxiety-unspecified? Its hard to get the right treatment if you do not have the full picture of your diagnosis & what exactly is going on. Anyway, hope you get some sleep!

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Yes, that's definitely true. That said, I've accepted over the years that this is a big thing to ask :P

I think I've just got so ground down early on and have been stuck in an abnormal situation for so long that I've just never been able to build up my defences, and build up myself.  So I just feel so incapable in general.

Thank you again -- I will get back to you tomorrow. :) Best wishes

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I make lists. I make lists of lists. In fact, I have a whole book, complete with a table of contents, that's just a book of lists. It's the only way that I know how to 'think' in a coherent way; I need to be able to remind myself of how I got to where I currently am.

When I realized that I was really struggling in this area I started trying to incorporate the various life skills that are taught to people with short-term memory loss following a TBI (traumatic brain injury). They are a lot easier now that smartphones are commonplace. But I found them really helpful for basic living and coping skills.

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That is a really good idea, thanks. :) I do make lists sometimes, that get lost, so I'll sort that out today.

My therapist is now on maternity leave.  Over the past few days, I've been speaking to someone who's helping me get referred to an Inpatient Anxiety Disorder Unit in London -- they also treat dissociation, and it's basically an intensive course with lots of mental health professionals over several weeks (mainly using up-to-date CBT therapy) alongside people with similar problems.  And he's helping me make the trips and argue my case and everything, so I owe him a million.

If we're successful it'll be a long wait but at least that's something.  They are meant to be really good...

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