Other What are the pros and cons of seeking diagnosis of a dissociative disorder?

[KayW]

After I was diagnosed with PTSD, I started therapy and after a few sessions, the therapist tried to explain dissociative parts and splitting and that's why she didn't feel she was the right therapist for me. I didn't really understand what she was talking about at the time.

But more recently, I'm becoming more aware of changes between parts. My current therapist is now using the language of parts and is helping me work with this.

But the more aware I become of the divisions and of how I'm not in control of those changes, the more I worry about it. And this makes me think about whether I have anything diagnosable and whether a diagnosis would help me to understand it more (and be less afraid of it).

I'm not in a country where diagnosis is easily available. I can't afford a session with a psychiatrist and the wait for national health service is over 2 years.

So I wanted to ask what the pros and cons are of seeking diagnoses?

 

[arfie]

i'm a bit confused, kay. does "seeking diagnosis" mean looking for further treatment or new names for ^it^?

i started psychotherapy in 1972 when there were nowhere near so many clinical names for the various mental health conditions. the focus was on symptoms far more than the conditions causing the symptoms. while having more names for the conditions does make ^it^ far easier to talk about, i believe the hyper-specialization has caused allot of tunnel vision and counter-productive divisions in the mental health community.

 

[Roland]

Pros:
-better understanding of what you’re dealing with
-able to make an actionable plan to treat what you have if you know what you have
-validation (this was huge for me, I grew up constantly being told I was manipulative for crying, belittled, gaslit, etc, being given a diagnosis helped me end cycles of gaslighting myself, and identifying myself as “crazy” because I experience all this shit (and am cursed with self awareness) but didn’t have words to explain what it was).

Cons:
-expensive
-can be misdiagnosed, which causes a lot of confusion
-can attach your identity to the “label” and not grow or heal past it
-potential for being discriminated against because you’re “diagnosed” especially if it’s something viewed in a worse light

The first time I even heard of trauma splitting was from my psychologist who diagnosed me. My trauma splits showed on my psychological evaluation. That was the missing piece that I really needed to understand what the hell I go through on a daily basis.

 

[Movingforward10]

Thank you for starting this thread @KayW , as I have been wondering the same thing.

and thanks @Roland for putting validation in a pro list. That’s been a helpful shift in seeing that as a positive thing as opposed to me seeing it negatively.

sorry @KayW , I got nothing to add ! Just reading along.

 

[KayW]

@Roland thank you.

better understanding of what you’re dealing with
-able to make an actionable plan to treat what you have if you know what you have
-validation (this was huge for me, I grew up constantly being told I was manipulative for crying, belittled, gaslit, etc, being given a diagnosis helped me end cycles of gaslighting myself, and identifying myself as “crazy” because I experience all this shit

I think better understanding of what I'm dealing with is a big thing for me as well as validation - I grew up with a lot of invalidation also and I have a part that takes me into denial and believes I'm just being stupid/attention seeking/ making a fuss over nothing. So validation would help shut her up I think.

I work with a psychotherapist and they don't give official diagnosis, but of course do have knowledge of disorders and effects of trauma. She acknowledges and is helping me work with the different parts of me. I'm not sure that a diagnosis would effect my treatment - it may also be that my GP wouldn't send me for diagnosis as I'm already getting treatment.

expensive
-can be misdiagnosed, which causes a lot of confusion
-can attach your identity to the “label” and not grow or heal past it
-potential for being discriminated against because you’re “diagnosed” especially if it’s something viewed in a worse light

Expense is a huge barrier for me - I already pay privately for therapy.
The first therapist that couldn't work with me when discussing options was also concerned that taking a diagnostic route might just land me with a label that caused more shame or distress... And all they would do is put me back on a waiting list for therapy, so may as well just go for therapy.

 

[KayW]

i'm a bit confused, kay. does "seeking diagnosis" mean looking for further treatment or new names for ^it^?

Hi Arfie,

I think this is part of my dilemma. I am looking for understanding of what might be going on for me because I'm feeling confused and this causes more distress.

I think in other countries diagnosis is standard for insurance purposes and it seems multiple diagnoses are commonplace (and maybe over-diagnosis and misdiagnosis). I live in the UK and it's kind of the opposite, there aren't enough qualified people or money to pay for them. So you have to proactively seek diagnosis.

In the meantime, I'm already getting treatment and have a therapist that works with those different parts. But I don't really understand what I'm experiencing and for me, being able to read about something helps reduce those fears.

 

[arfie]

I think in other countries diagnosis is standard for insurance purposes and it seems multiple diagnoses are commonplace (and maybe over-diagnosis and misdiagnosis). I live in the UK and it's kind of the opposite, there aren't enough qualified people or money to pay for them. So you have to proactively seek diagnosis.

in 1972 u.s., insurance wouldn't touch mental health treatment. i was on my own, paying out of pocket, using outreach clinics, etc. my first stable psychotherapy started when i joined the army in 1973 using army shrinks. that psychotherapy segwayed to the veteran's administration. the pentagon is almost as anal about labels and classifications as the private insurance companies. the pentagon doesn't worry the budget aspect as hard as insurance capitalists do.

while the administrators have gotten ever more heavy handed with their labeling requirements, the shrinks with whom i was actually working have groaned non-stop about the frustrations of treating administrative labels more than individual dynamics. no two bipolar/ptsd/did/etc/etc victims are as alike as the executive controllers in any given board meeting.

I'm already getting treatment and have a therapist that works with those different parts. But I don't really understand what I'm experiencing and for me, being able to read about something helps reduce those fears.

way back when the dumbest of people were still smarter than phones, this would have been a rousing therapy breakthrough. in my own case, i was an avid reader of self-help books before i submitted to pro guidance. the unguided tour of self-help experts had created a cacophony of warring factions in my head. there are a great many conflicting experts in the psychiatric communities. 1,000 rights equal chaos. my reading was far more productive when i let my pros guide me to which books i should read. i was released from formal va psychiatric care around around the turn of the millennium. the internet was still too new for the digital mediums to have been a conflict. in 1972, people's eyes glazed over when i used words like, "internet." only mega-nerds like me knew what an internet was.

 

[Roland]

@Roland thank you.

I think better understanding of what I'm dealing with is a big thing for me as well as validation - I grew up with a lot of invalidation also and I have a part that takes me into denial and believes I'm just being stupid/attention seeking/ making a fuss over nothing. So validation would help shut her up I think.

I work with a psychotherapist and they don't give official diagnosis, but of course do have knowledge of disorders and effects of trauma. She acknowledges and is helping me work with the different parts of me. I'm not sure that a diagnosis would effect my treatment - it may also be that my GP wouldn't send me for diagnosis as I'm already getting treatment.

Expense is a huge barrier for me - I already pay privately for therapy.
The first therapist that couldn't work with me when discussing options was also concerned that taking a diagnostic route might just land me with a label that caused more shame or distress... And all they would do is put me back on a waiting list for therapy, so may as well just go for therapy.

It definitely helps but won’t “shut her up” lines instantly or anything, but it would help you deal with it.

It may not change your treatment with that therapist, but if you get diagnosed with something you don’t expect (that’s an accurate diagnosis) you may choose to change your treatment plan. It’s hard to treat something when you don’t know what you’re treating, though it is good the parts work is helping you and your therapist recognizes it.

I get it, I paid out of pocket for psychological evaluation. Well worth it to me, but it was expensive. If you feel strongly it would help, you can look into your options, or just save money.

Ugh, I hate the idea that labels are bad. I felt shame and disgust because I didn’t have a label. I grew up being told that I was overreacting, manipulative, etc, I internalized all that shit and the only labels I had for myself was that I was “bad” and “crazy”. Getting diagnosed helped me sort it out, like no I’m not crazy, I’m wounded. Ptsd is a wound that I’m going to have to live with forever.

I got a diagnosis of avoidant personality disorder and my psychologist even told me to focus more on ptsd, because with me being in my early twenties, my avoidance symptoms are likely more ptsd than a personality disorder anyways. I find I don’t relate to that diagnosis as much. I got diagnosed with it because I met the criteria for it, but I think it may be more of a reflection of the toxic friend groups I was in, I got to a point where I stopped sharing myself with others, just keeping to myself and being very private. If someone I don’t trust talks to me (which was my whole friend group) I would only ask questions and get them to talk and if they asked me, I responded with general vague answers so they couldn’t use what I said against me.

Anyways, all this to say, a diagnosis is what you make of it. I wasn’t comfortable saying I had ptsd when I didn’t have the diagnosis. I think self diagnosis is dangerous when it comes to more serious mental issues such as mood disorders, and personality disorders. I genuinely was confused if I had autism, vs. bpd, vs ptsd, or a combination of a few of those. I had no idea about trauma splitting until my psychological evaluation.

I haven’t even been to therapy since getting the psychological evaluation, yet I’ve gotten better because I know what I’m dealing with and although I’m cursed with self awareness, you need someone else to diagnose you, you can get lost, or you don’t see for the forest for the trees as the idiom goes when just looking at yourself.

 

[No More]

I can see the side of therapists saying treat the symptom, not the label. There’s a lot of crossover anyway and psychiatrists can and do frequently get it wrong

I also see the side of - the more information the better?

For me it comes down to whether a diagnosis is likely to negatively affect you in the future. For example, certain disclosures you might need to make in regards to jobs etc (although one would hope if you currently had enough symptoms you’d fess up, but often a past diagnosis is enough to rule you out). I think going in with the idea you’d prefer one diagnosis over another is a bad place to start, because I don’t see how you can be impartial and honest if you are already skewed towards a symptom set.
I think going and laying it all on the table, let the cards fall where they fall and then you work with the answer to help you guide treatment is where I’d shoot for, if that’s what you want to do.

As usual, I am also the complete opposite of people saying that a diagnosis made them feel less ‘crazy’.

The diagnosis made me feel like I was crazy and bad and labelled and put in box and I fought it so hard for a long time (still will, on occasion). So just something to consider for people that might be on the other side of the coin.

 

[Nessa7]

In my personal experience (in the United States), getting an official diagnosis wasn't helpful to me. I was misdiagnosed, and it was pretty upsetting. It didn't make a difference in my treatment, because everyone in my care team chose to ignore it. Even though my therapist can't officially give me a diagnosis, I trust her more because she knows me so much better than someone could after just a few days.

 

[KayW]

in 1972 u.s., insurance wouldn't touch mental health treatment. i was on my own, paying out of pocket, using outreach clinics, etc.

@arfie thank you for sharing your story. It's sad, but my experience in UK resonates too well with 1972 US. I was diagnosed with PTSD over 10 years ago and offered standard CBT - when she couldn't treat me the choice was a further 2 year wait for further assessment or to refer to a charity that offered long term therapy.

shrinks with whom i was actually working have groaned non-stop about the frustrations of treating administrative labels more than individual dynamics. no two bipolar/ptsd/did/etc/etc victims are as alike as the executive controllers in any given board meeting.

This makes sense and makes me feel like maybe I should just stick with the work I'm doing with my current therapist

 

[KayW]

I’m not crazy, I’m wounded

I should say this to myself more often

I got diagnosed with it because I met the criteria for it, but I think it may be more of a reflection of the toxic friend groups I was in

This is a good point. I look back at myself in my twenties and would probably have met different criteria than I did in my thirties.

Anyways, all this to say, a diagnosis is what you make of it. I wasn’t comfortable saying I had ptsd when I didn’t have the diagnosis. I think self diagnosis is dangerous when it comes to more serious mental issues such as mood disorders, and personality disorders. I genuinely was confused if I had autism, vs. bpd, vs ptsd, or a combination of a few of those. I

Yes I relate to this. The difficulty I have currently is that it's dissociation that causing me most concern and I find little written about it in relation to PTSD- instead studies go straight to dissociative disorders. That adds to my confusion and anxiety about it.

I haven’t even been to therapy since getting the psychological evaluation, yet I’ve gotten better because I know what I’m dealing with

When I was first diagnosed, I had to wait a while until I could get treatment but just knowing more about what was happening and knowing help was going to come helped me cope better.