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Help please!

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Help please!

Postby Owleyes » Sat Oct 27, 2012 10:59 am

I'm at a crossroads. I'm due to see my GP next week to try to get a referral to a specialist for diagnosis. I feel hugely conflicting emotions about this. For the last year, I've been in a crisis due to a traumatic event which led to the recovery of some childhood memories, and, eventually, to the possibility of DID/DDNOS. I've finally got to a point where I'm ready to get help. But there's a lot of resistance. I'm worried I'm just going to cancel the appointment with my GP. Or, if I go and it's difficult to get him to understand or believe me, that I'll just give up. Part of me is looking for any excuse to give up and bury all this again. The fact that I'm feeling more stable now than I have for a long time also lends weight to the 'I'm OK, leave things as they are' argument. But another part is desperate to get help. It's been long enough dealing with severe depression, PTSD symptoms with no obvious cause, isolation, mood swings, all of it. I've tried to get help in the past and been easily discouraged. I've seen at least half a dozen therapists over the last ten years and never stuck with it. I need some encouragement. Tell me the reasons to keep trying, tell me what will happen if I don't, give me any of your encouraging stories about getting diagnosed, anything and everything welcome! Oh, and any tips on exactly what to say to my GP and what kind of referral to ask for (in case he's clueless) would be appreciated. (I'm in the UK, by the way). Thank you all so much for your support.
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Re: Help please!

Postby 1+????? » Sat Oct 27, 2012 12:14 pm

Hi Owleyes, I can really relate to your situation. I am in the UK also and have in the past two weeks got my GP to send of a request for funding for an assessment at a specialist clinic in london. I have a therapist but she is not trained in this and is causing more upset to parts inside than helping. From what I've read and my understanding of how specialists in DID work, it will make all the difference to get someone who is trained in this. DID is a totally different emotional language and so going to a therapist who who doesn't speak it is like going to therapist who is speaking portugese - it just doesn't fit. I don't where abouts in the UK you are? I would say to you be prepared to fight for specialist treatment as currently NICE have no guidelines on treating Dissociative disorders (ridiculous, I know) though experts in the field are pushing them to release some. This doesn't mean that you can't get the right help, it just means you may have to be demanding. I can give you a brief summary of what happened to me. I went to my GP back in April and was told that becuase I was asking to go to a clinic outside of my borough (though only a few miles away) I first had to have an assessment by a local psychiatrist to see if he thought I could be treated within my borough, that this is standard procedure. The man, in my opinion, shouldn't be practising. I won't go into details but he clearly didn't believe in DID and didn't even have an interest in PTSD and told me that he would not be referring me to specialist services as they (my borough) could deal with it themselves and then offered treatment that was totally inappropriate before making an insulting joke at my expense. I'm telling you this not to disourage you or to frighten you, just to let you know you have to be prepared to really be forceful in your demands and may have to put up with some ignorance before getting them met. After this I actually wrote directly to the clinic I am hoping to get treatment at who were wonderful and advised me it was still my right to patient choice to request my GP refer me and offered advice as how to word the referral and suggest that I contact my MP. So I wrote to my MP (who actually responded quicker than my doctor and who wrote to the funding body in my borough) and went back to my GP and only two weeks ago did the request for funding finally go off after I was very assertive and actually put down on paper that I wasn't going to last much longer if I didn't get the help I needed. My GP after this was actually very very nice and helpful but admitted that she didn't know a thing about DID and that I was the first patient she had ever had with it. She asked me to come in and check what she had written in her funding request and I am so glad I did as I don't think I would have stood a chance otherwise and I literally had to write the whole thing for her (not kidding!). I am still not certain I will get the funding but in that case I will get a mental health lawyer. I don't want to discourge you in writing this, I actually want to show you that if you fight and fight you can get results but that the NHS mental health system as it stands relies on people with dissociative disorders sitting back and accepting unsuitable treatment due to misunderstanding and outright denial that it exists in certain members of the mental health profession in certain areas (unless you're lucky and are in the right postcode which you may well be). I would get together as much information as possible before going to you GP. Go to the website for the International Society for the Study of Trauma and Dissociation and print off their guidelines and show your GP as he will probably know very little about this or have preconceived and inaccurate ideas. Also, contact the Pottergate Centre for Trauma and Dissociation and ask them to send you a DES and a SDQ-20 (dissociative and somataform experinces questionairre) to fill in and they will score it for you and return it to you for free (I did this and Remy Aquarone returned it to me within two days - he is amazing and has written some amazing things about dissociation). The Clinic for Dissociative Studies also hve good info. Take all this to your GP also and show him that you are absolutely serious about this and desperately need specialist help, that international guidelines for treating these sorts of disorders recommend more long-term psychotherapy and that a six week course of CBT isn't going to cut it. I also found it helpful to, over a week, write down a list of symptoms as I would always forget half of them when talking to my GP. I completely understand the thing about different parts feeling that it's best to leave things but here's what I experienced last week - the part of me that deals with doctor's appointments and stuff like that (she seems very together) went in to look over the funding request. My gp said she had ticked the box that said the request wasn't urgent and this part of me says 'yes, ok that's fine'. Get back, get majorly triggered, switch into an utterly desperate part who needs help NOW and can't believe that that part agreed to the non-urgent request! :? I supppose what I'm saying is that this stuff doesn't just go away on it's own and when it rears its head again I hope that you will by then have the support around you to cope. In fact, maybe now is the best time to go about this as you may be feeling more able to demand the help that you need and deserve. I hope this has helped a little.
Kind regards,
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Re: Help please!

Postby 1+????? » Sat Oct 27, 2012 4:16 pm

Hi Owleyes, sorry i just read a past post of yours saying you got the DES etc scored...I'm new here so not up on it all...I'm also sorry for all the stress this is causing and I hope my earlier post didn't add to it. I suppose I wanted to help arm you as someone who is going through a similar thing and has found out that more information about how the system works is better than less...hey reading your earlier post showed me that we got our DES etc scored within weeks of one another! Spooky :)
Kind regards,
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Re: Help please!

Postby Owleyes » Sun Oct 28, 2012 9:13 pm

You didn't add to the stress at all, your reply is really helpful, thank you. It's been my experience in the past that GPs, and the NHS in general, are not at all good at dealing with mental health issues. The UK has a lot of things going for it, but our mental health care is not one. I blame the 'stiff upper lip' culture :) Anyway, I know I need to be prepared for the possibility that it will not be easy this time, either. I don't know if I could manage to be as assertive as you've had to be! I really relate to this part of what you wrote:
1+????? wrote: the part of me that deals with doctor's appointments and stuff like that (she seems very together) went in to look over the funding request. My gp said she had ticked the box that said the request wasn't urgent and this part of me says 'yes, ok that's fine'. Get back, get majorly triggered, switch into an utterly desperate part who needs help NOW and can't believe that that part agreed to the non-urgent request!

This is exactly the kind of thing that happens to me, especially if the appointment or whatever doesn't go the way I'm expecting, or I meet resistance. I tend to go all meek and mild and agree to whatever they say, then get home and get furious with myself/them for agreeing to it. I need to find a way to stick to my guns.
1+????? wrote:hey reading your earlier post showed me that we got our DES etc scored within weeks of one another! Spooky

I don't know if it was you or someone else from the UK who joined the forum about the same time, but someone posted about having done it, which was what inspired me to do it (finally!) so, if that was you, thanks :D And if it wasn't, thanks anyway because your reply has really helped.
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Re: Help please!

Postby Owleyes » Tue Oct 30, 2012 8:38 pm

Update: Had my GP appointment today and I think it went well. He's agreed to refer me for an assessment. I suppose the next hurdle is whether the psychologist believes me. Oh well.

And, following on from that, I was able to tell my husband today that I may have a dissociative disorder, and that's why I behave oddly at times, etc. I could tell that the idea of 'other parts of me' was freaking him out so I deliberately backed off that and didn't go into it. Just explained about not always being able to control what I'm doing/saying, or not always remembering it properly afterwards. He actually came up with a couple of instances where I've behaved 'strangely' and he didn't know why, and asked me if I remembered them, and I didn't so that was kind of a good illustration for him. He spent a little while rationalising it all to himself and ended by saying 'So lots of people have this kind of thing, it's just a bit more extreme in you and it's nothing to worry about', trying to sound like he was reassuring me, but he was reassuring himself, really :roll: Anyway, I feel more peaceful for having done all this, but still kind of freaked out at having 'come out' to two people in one day :D
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