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Getting a diagnosis- should I? Did it help you?

(23 Posts)
AnxiousMunchkin Thu 10-Mar-16 03:13:57

I have had intermittent mental health problems since my late teens, I'm now in my 30s. I have been on and off medication, when younger had difficulty engaging with talking therapies but now I have been through CBT and engaging as much as I can with therapy/medication, and self-help techniques - mindfulness, self-care etc. I've been told I have a lot of insight- which makes sense, I'm a professional in an allied medical field, well read, have volunteered giving people in crisis emotional support etc.

I have never had a diagnosis of anything, that I've been officially informed of. I did see a psychiatrist and psychologist at university, but did not engage well. Since then I have just seen GPs intermittently when things have been bad (depression/anxiety).

I now see my GP and have accessed CBT through IAPT. I am on medication. It all focuses on anxiety, which is the major thing affecting my day to day functioning. But if I am completely honest, I worry there is something deeper going on. There have been episodes of my life when if I look back, were possibly episodes of hypomania- obsessions with things, wild spending or extravagance beyond my means, impulsivity, promiscuity. I have a deep attraction to routine and order and the "right" way of doing things (ie, my special way, that might not have a logical basis but just "feels right") and it can be very upsetting for me if something doesn't fit this "right" way and I have to sort it out or it will instigate panic and fear in me. (In CBT the therapist identifies this as a problem with perfectionism, which seemed to be on to something). There are some things that are so "wrong" that I just cannot cope with. These are normal everyday things, but honestly just typing names makes me feel a bit sick so I can't right now. I do get intrusive thoughts- which often focus on me causing harm to others or myself or bad things happening to loved ones- which usually I can recognise and rationalise but sometimes I can't even though I know what they are, I still believe them. Recently I was pretty convinced I'd run someone over in a hit and run whilst driving home, but I'd blocked it out so couldn't actually remember it but I was pretty sure it had happened, despite absolutely no evidence. I know it didn't happen, on an intellectual level, but especially at the time I had a very hard time believing the evidence rather than what the intrusive/obsessive thought was telling me. I had to check my car for damage, check the news etc. I have in the past self-harmed physically, I get compulsions to do that now (I think about stabbing myself in the leg or upper arm, it would make me feel better) but I haven't acted on them. I secretly binge eat foods that I know will trigger IBS symptoms, often very severe. This has been something I've done for a long time. I can't understand why I do that. Which I find incredibly frustrating.

I wouldn't want to self-diagnose from the Internet, although sometimes I feel I'm as capable of reading NICE guidelines and DSM manuals as my GP is. I guess my question is, if I was to ask for a 'proper' mental health diagnosis, would that be helpful? Have people found that being told that "yes, you have X disorder" helped them in their recovery or management of their mental health? And if I was looking for this kind of thing- I'm guessing I'd be needing to be referred to a psychiatrist? I haven't told my GP a lot of these worries. Would I need to? Or could I say, I have these concerns, can I see a psychiatrist?

That was long, thank you if you managed to get through that all blush

ICJump Thu 10-Mar-16 05:29:50

Yes it's helped. It's mean I can have medication to bring my anxiety down to a level that I can function. It's allowing me to do the other parts of treatment.
It also made me feel less crazy ( having the diagnosis meant it wasn't just me having a ducked up personality but that I was I'll)

howcanikeepdoingthis Thu 10-Mar-16 07:59:34

For me a label brought stigma, isolation and judgement. I'm not a psychiatrist but with the complex difficulties you describe I can imagine you ending up with a personality disorder label. If that opened the door to a world of support and healing, then the offensive label might not be so bad but sadly this isn't the case. Can you afford a private psychotherapist? I'm sorry you are having such a tough time. X

Criminy Thu 10-Mar-16 11:21:07

I echo howcanikeepdoingthis
In theory, getting a diagnosis should allow you to come to terms with an illness and should make working out what treatment to have easier. Maybe give you more understanding of yourself.

In reality, I'm guessing you're female, you have a history of self-harm, have episodes of impulsivity and recklessness, and seem to be quite up and down over the long term. (Sorry if that's a bit cold). I would worry that you'd get a BPD/EUPD diagnosis. In most areas that is basically a huge stigma - there is little help, but a lot of prejudice unfortunately. I would do pretty much anything to get rid of this diagnosis, it's not helpful at all. Sorry if that seems a bit negative, but it's the reality of the situation.

You could do a bit of research on BPD/EUPD, you might think it sounds likely, which might give you a greater understanding of yourself. Private psychotherapy is pretty much the only option for treatment though.

NanaNina Thu 10-Mar-16 13:49:07

Hmm -a lot of different things going on for you OP. I am no medic and dislike internet diagnosis, but I'm sure you've wondered about bi polar as you describe some of the classic symptoms, and your MH issues began in late teens which is usually when bi polar emerges. But on the other hand you describe symptoms of OCD - and it seems to me that those are the most troubling for you.

Re a diagnosis - people are right that you might get a diagnosis of EUPD which as I'm sure you know is just a diagnosis when nothing else fits. Yu could ask your GP for referral to a psychiatrist but you would have to tell him/her your MH issues so that a decision can be made as to whether you will be referred to a psychiatrist, as referrals are made as I'm sure you know on the basis of clinical need.

The other option is a private psychiatrist which I think would be best. I saw one recently - it was £250 for an hour but I got 90 minutes and a follow up letter outlining the contents of our discussion and the options for treatment.

AnxiousMunchkin Thu 10-Mar-16 19:52:14

Thank you for your replies everyone- a few things for me to think about. I have at times wondered about a bipolar type disorder or an ocd type but never felt wholly convinced or not severe enough IYSWIM as a lot of the down/paranoid/intrusive thought aspects of what happens are internalised, I am 'functional' in that I work, in a high responsibility professional role. Although my home and personal life is severely affected right now, I'm not as impaired as someone who is unable to work etc, although I've been there in the past and my biggest fear is deteriorating to that state again. This is the first time that I've really asked for help when I've been in a state to really engage fully and be self aware enough to follow through with treatments. And really admit, at least to myself, the extent of some of the thoughts, feelings and behaviours which are concerning. I don't want to reach crisis again, but it seems like most services are focused around crisis management.

My GP is very good, but we just focus on how am I coping with anxiety/where is my mood, sorting medication. I haven't told her about the intrusive thoughts, the self harm thoughts or bingeing. She did pick up a bit on the mood swings, and asked if I'd always been like that, I kind of brushed it off a bit and didn't admit to the extent of some previous highs.

I've never really considered BPD/EUPD but I will have a good read around that. One of my thoughts about BPD is that is what Winona Ryder's character is diagnosed with in Girl Interrupted, and I always identified with that character (who was a real person who wrote the book) and felt I could have been her in a different time & place.

For those that said a diagnosis, or specifically a personality disorder diagnosis, has been a barrier and a stigma- do you mean within mental health services? I can't imagine telling many people in my life about something like that. I have a partner, who is wonderful and very supportive.

A private consultation is a possibility, but ongoing private treatment would be difficult.

NanaNina Thu 10-Mar-16 20:04:35

If you had a private consultation, you don't need to transfer your care to the private psychiatrist although I am think that's what I might do. I need to ask my GP if she would be prepared to accept scripts from the private psychiatrist so that I could get the meds on the NHS. It would cost me £125 for a 30 minute apt every 2 weeks. I'm pretty sure she would. It's just that in my hospital trust there has been a problem with filling the consultant psychiatrist post and there is a series of locums.

No harm in "coming clean" with the GP and asking for a referral - it would be a good thing if your GP did know the extent of your MH problems though.

Criminy Thu 10-Mar-16 20:05:30

My personal experience of mental health services is that yes, there's pretty much only crisis management, at least in my area. Mental health services really are a postcode lottery. Which is ridiculous, because you sound in a good state at the moment to really work through issues.

And yes, I meant a barrier and a stigma to mental health services, you can often just be classed as attention-seeking and manipulative.

Becca19962014 Thu 10-Mar-16 20:53:56

In my area the only thing for BPD is DBT and you must sign an agreement not to self harm, or go to A&E and do daily, hourly, emotion diaries. You are NOT allowed access to the crisis team because 'that encourages BPD behaviours', likewise you are not to go to A&E because it's not there for borderlines.

I know someone who lives with this condition and, she's completed DBT three times in five years because CMHT say that it's guaranteed to work if the patient tries hard enough. Ive an email in my inbox today that says she's been told to do it again after being referred to CMHT by her gp after seeing them. She's really really upset, and I'm concerned for her. The treatment she had has been horrendous -she was eventually hospitalised years ago after a consultant in a&e put their foot down and refused to let her leave, she was discharged within twenty four hours as borderlines shouldn't be allowed in hospital.

I have another friend with bipolar who is treated very differently.

It really, shouldn't be like that. Needs are needs and diagnosis, within reason, shouldn't be allowed to determine whether someone who has self harmed and attended A&E is treated with respect, dignity and support or told they are wasting time and services that aren't there for people 'like them'.

Honestly I prefer to look more at needs than diagnosis. I had a therapist ten years ago who said to me they saw two people with the same diagnosis and same age, the manifestation of their illness was totally different and I think that's something a lot of people can forget and get tied up in diagnosis and not look at need, she was a private therapist and helped me a lot at the time, ive never found having labels helpful, they can, sometimes cause more problems.

Becca19962014 Thu 10-Mar-16 20:55:13

Sorry that got a bit long! Basically in my opinion looking at needs of individuals is more important, though I appreciate that would take up far more resources than the nhs has.

AnxiousMunchkin Thu 10-Mar-16 23:15:52

Becca - don't apologise at all it was a really relevant response. I agree that perhaps needs are more important that diagnosis and that's generally what I'm musing over at the moment.

It sounds like your health trust has a pretty awful approach to supporting patients with BPD. It actually states right at the start of the NICE guidelines, "People with borderline personality disorder should not be excluded from any health or social care service because of their diagnosis or because they have self-harmed", so your trust seems to be going directly against that, if patients with BPD are excluded from accessing the crisis team or refused therapy due to self harm. I don't know how complaints are managed - of course, a lot of people with mental health problems are not in a position to be able to pursue a complex complaints or appeals procedure.

I've started a bit of reading. I just came across this youtube video which was a fairly nice clear introduction to BPD. The rest of her channel seems very interesting as well, a lot of mental health topics covered.

It seems that the diagnostic criteria for BPD changed radically between DSM-IV and DSM-5 (published in 2013). Which is a bit of a joke in itself really, when you think about it, all mental health conditions are "made up" in a way, they are not backed by evidence or research, but voted on by committees of psychiatrists at conferences. They're opinions and theories, they're not science. Homosexuality used to be a diagnosable mental health condition. So maybe we really shouldn't worry so much about diagnoses.

Becca19962014 Thu 10-Mar-16 23:39:29

My experience of complaints as a mental health patient is being told that I have 'misunderstood due to mental health difficulties what has been said/done' or 'lessons have been learnt' (which means we've had a chat to the person concerned they've said it won't happen again so that's it job done) and a crappy line about how grateful they are for me complaining hmm

Seriously complaining is, here, a total waste of time - and it will bite you in terms of how you are treated. Bloody nightmare.

piggywithwings Fri 11-Mar-16 00:29:03

I'd love to do a thread like this because although I have a diagnosis - I really don't think it fits and think another label would be more accurate and helpful. But now I'm labelled with it and it colours how certain professionals relate to me

It's health anxiety I'm labelled with - and I can no longer go to the dr without feeling I'm dismissed

I'd also be wary of the BPD diagnosis OP - I've known 2 women get the diagnosis and they were definitely seen as attention seekers rather than women in genuine need due to their MH. Iv also heard the line - if you want to be diagnosed with BPD, you can be almost certain you don't have it - out of a psychiatrists mouth when I suggested I might have it some years ago

howcanikeepdoingthis Fri 11-Mar-16 07:50:01

I have collected diagnosis with the same indifference as my son collected football stickers aged two, when it was my husband excited by the world cup. Bipolar 1, bipolar 2, anxiety, depression, bpd, eupd, ankanastic pd (whatever the fuck that is?), eating disorder, post natal psychosis. None of them mean much to me. It means I am viewed as a nightmare by most health professionals which seems a little unfair as the lengthy list reflects their inability to offer care, compassion and heal my distress. Some of my trauma has fallen at their hands.

Op I wonder if intuitively you have an idea what might help? Its a hard question. For me, meaningful employment has done more for my self esteem than therapy ever did. Peer support has been really helpful too.

I totally agree that it is about need.

AnxiousMunchkin Sat 23-Apr-16 20:39:53

I thought I'd revisit this thread, rather than start a new one, as I'm wondering about the to-diagnose-or-not-to-diagnose question again. This has turned out super long, so apologies. If anyone gets through the whole lot then all credit to you.

At my most recent visit my GP suggested that I may have bipolar disorder. This does fit with a lot of what I've experienced over the years. Recurrent episodes of significant depression but sometimes with 'atypical' symptoms (such as hypersomnia, overeating). Other episodes that, in retrospect, would be easily classifiable as hypomania on a tick-box scale, which my when discussing them with my GP she described as "reckless or potentially endangering behaviour" which I do agree, with the benefit of hindsight.

I didn't bring up with her some of the OCD-type symptoms I've had recently (the intrusive thoughts/compulsions). She knows about my neuroses around order and perfectionism but we mainly talk about anxiety which is what most clearly affects my day to day functioning at the moment and depression.

We discussed things and agreed that for the time being I do not want to pursue a psychiatric referral as we didn't feel it would be helpful at the moment. We both agree that mental health diagnoses are only ever opinions and that we want to focus on function and management of symptoms rather than worry about labels. She has put my antidepressant & beta blocker medication on repeat for 5 months and I am still waiting to hear from IAPT about when high intensity CBT will start, I have been on the waiting list since Feb and was told it was around a 4 month wait, so that shouldn't be too long (already completed low intensity CBT with them).

So for now I have decided against diagnosis but I am questioning it. I've found the last few days very difficult since the GP appointment, really it is the first time a medical professional has voiced that I could be diagnosable, that I'm not just weird or attention seeking or something. I guess I'm still processing that.

Having done more research the arguments against seeking diagnosis are still compelling to me. If diagnosed with bipolar I'd have to declare it, to DVLA and for travel insurance for example. This just sounds like potential for hassle and inconvenience. I can access the treatment I want right now without a diagnosis anyway. Even a local peer support group doesn't require you to have a diagnosis to attend. I'm not convinced that I'd want medicating out of the hypomanic states because when I feel 'mildly' hypomanic it's great, I'm super productive and happy and organised and can keep up with all my perfectionist high standards and have loads of energy and life is great. As long as it doesn't tip into destructive behaviour and I keep things in check I genuinely don't see the problem with it. In fact I'd quite like to get back there right now as I feel crap at the moment. At the end of the day, I am who I am and a diagnosis isn't going to change that.

I can see some positives to diagnosis. Two main ones: that I might not have enough insight to recognise if I can self manage or not. And by definition I wouldn't know if that was the case! And second, I don't yet have children. Whilst we have no immediate plans it is a possibility in a few years and I know that women with bipolar disorder are at high risk for becoming unwell perinatally and at that point, if I truly do have bipolar disorder, I would benefit from appropriate psychiatric supervision. That would be much easier to access if I was already in the system.

I guess I'm just wondering if anyone with personal experience wants to offer their 2p on this. With the current dire state of NHS mental health services it seems that it'd be a massive lottery if I did pursue secondary care and might just be a massive stress and disappointment to go through. But could it actually offer me a better future? I don't know.

I'm thinking about possibly a private psychiatrist/psychologist consultation. I do have private health insurance through work that would cover it but am unclear as to whether that would then connect the referral to my NHS records (still have to get GP to refer) or whether work would be aware of the referral. If I did get a private diagnosis/opinion, and it was not on my NHS records, would it still be 'official' ie would I have to declare to DVLA etc?

Well, if nothing else writing all that has helped my clarify my thoughts to myself.... apologies for the long waffle.

KeemaNaanAndCurryOn Sat 23-Apr-16 21:40:15

The first thing that came to my mind was anankastic, but you have traits of all sorts of stuff including bipolar.

I went through life with depression and anxiety and periods of silly behaviour. Like you, it could've been anything out of a load of things. In my late 30s I was assessed, got a diagnosis of bipolar II and was put onto a mood stabiliser. Hey presto, I felt "normal" for the first time almost ever. I've occasionally stopped the meds and ended up ill again, but I've learned my lesson now.

For me, diagnosis meant mental wellness. Totes worth it.

KeemaNaanAndCurryOn Sat 23-Apr-16 21:42:56

Oh and yes if you get a diagnosis of bipolar, you need to declare it to the DVLA. I'm on a 1 year license that I have to renew every 12 months with sign off from my psychiatrist. While that's an utter PITA, it's still worth it.

KeemaNaanAndCurryOn Sat 23-Apr-16 21:44:47

WRT travel insurance, you declare it and have it as an uncovered item and it costs the same as any other insurance. I know when I'm stable the chances of my having a relapse are so small. I'm not going to need it covered while I'm on my hols abroad.

KeemaNaanAndCurryOn Sat 23-Apr-16 21:46:53

I really need to read the whole thread before posting - I ended up assessed after becoming pretty unwell after having the children. It changed from difficult but manageable to ending up in hospital.

Clonakiltylil Sat 23-Apr-16 23:28:41

I have had nothing but positivity and understanding regarding my BPD. It was such a help getting the diagnosis.

dangermouseisace Sun 24-Apr-16 19:11:45

I've been involved with 'services' on and off since I was 17 (now nearly 40). I think the problem with diagnosis is that it doesn't give the whole picture. And if you have a diagnosis medical people expect you are doing x because of your diagnosis, and if there are elements of your actions that don't fit that particular diagnosis then they give you other ones that might be stigmatising.

I'd rather I had no friggin diagnosis as that I was just treated as a person.

KittyandTeal Sun 24-Apr-16 19:18:24

You sound a lot like me!

My dx helped because on top of dealing with life and a MH illness I suddenly realised I wasn't 'normal' and not everyone manages life as well as what I was feeling! Is was an ahhhh moment for me when it all fit and suddenly thought 'well bloody hell, no wonder life's bloody hard sometimes' I'd just assumed everyone felt my way but cooed better!

I have recently had a diagnosis of PTSD on top of my bpd dx. I knew something wasn't right though which is why I saw someone quickly. I scoffed at PTSD at first then read about it and it fits. It helps me realise that I'm not going mad and what I feel isn't normal but it isn't just me iyswim.

In the past it has also helped me get proper medication that worked too.

KittyandTeal Sun 24-Apr-16 19:20:43

Shit keema! Is that true?! Oops, I was on a bipolar dx for a few years before it was changed to bpd. It was bipolar II though so didn't ever loose touch with reality.

DH is a police officer too. blush

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