Was your (C)PTSD misdiagnosed?: - Heal My PTSD

Heal My PTSD

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Was your (C)PTSD misdiagnosed?

Nathalie99Nathalie99Administrator167 Voters

Please select all that apply:

27 Replies

Got the mention of C-PTSD 12 years ago, but I'm only getting trauma CBT now!! (correction... Still waiting for first appointment!! Damn the NHS cut backs!!).

waylay
waylay in reply to aber218deen

Can I ask where you're getting treatment? There's nothing available where I am....

aber218deen
aber218deen in reply to waylay

Hi waylay, I live in Inverness, in the north of Scotland, which is NHS Highland.

In the past 2 years since this poll was taken,I've been to get trauma CBT, but the doctor I saw thought a therapy called ACT (I can't remember what it stands for,but you can google it.) would be more beneficial to me, but unfortunately with my huge trust issues,along with anxious avoidance personality disorder, it didn't work for me,also she said that trauma CBT would be a waste of time!!

So currently I've been referred back to the pain psychologist I was seeing before,but I'm still waiting after 8 months.

So what I'm doing now is seeing a private councilor who does it voluntarily and I only need to pay £5 per week as it run by the Church of Scotland .(I'm not religious,but that's ok with them!) I can honestly say that I've got through ten times more crap in my head than with 25 years of help from the NHS!!!! personally,I find that quite shocking,and now feel so let down by our "great " health service,also by social services back in the seventies.

I know you don't need to know most of what I've written,but I find it quite cathartic! So I hope there is something you can take from it. John.

waylay
waylay in reply to aber218deen

Thank you aber218deen !

I just checked other because I'm pretty sure have been diagnosed with everything...and put on so many meds, with so many side affects. I was in pretty bad shape since 2005. Then I started something called brainspotting. Has anyone here tried it? It's sort of a off shoot of emdr..that was when the c-ptsd diagnosis came about along with different trauma treatments. Today I turned 49 and I am finally hopeful..

PTSD, i only 1 of several diagnosis, i received. Thankfully though, some of my diagnosis have gotten to the point of being managable through alternative therapeutic modalities. (Such as; music therapy, various types of meditation. And occasional, infrequent psychotherapy visits. The medication they tried putting me, ended up causing, a severe allergic reaction. (Severe drunkenness, anxiety, etc., )

Depression was my first diagnosis back in 1994. After then years of breakdown, in 2005 I was diagnosed with PTSD as a working paramedic when I lost all functional ability. With years of system abuse levelled upon me by systems of care and compensation systems, I received through the ineptitude of others what's being coined "Sanctuary Trauma" by a clinician raising the issue on our behalf in Canada. Due to Sanctuary Trauma, on-top of all the work-caused trauma I suffered while still working, my diagnosis now is C-PTSD, Major Depression, and Substance Use Disorder. I'm in a vulnerable remission currently. I no longer cling to being naïve enough to think that I won't unravel again. I think misdiagnosis is very common. One of my mentors, Dr. Anna Baranowsky (Traumatology Institute) in a Community and Workplace Traumatology course she offers suggests to us that 60+% of all diagnosed mental illness, had a full and complete trauma history been conducted at the time of said diagnosis, the resulting diagnosed condition, whatever that condition might be, quite easily could shift all the way towards a diagnosis of PTSD or C-PTSD.

I was originally diagnosed as having anxiety/panic disorder. A friend who had anxiety disorder mentioned ptsd and I started doing some research. Came across Pete Walker's book on Complex PTSD and was stunned to read about what seemed like me. I had been bullied as a young teen and grew up in a strict religious household. I determined I had social anxiety disorder and complex ptsd. It was a total relief to connect the dots and understand what I had, why I had it and that it was not my fault and there was nothing wrong with me. It set me on my path to recovery. Very grateful to Pete Walker for his book, insight and being willing to share his journey.

For the record, given a previous issue that was considered by moderators as self-promotion: I am not employed at all. I do not teach. I am not promoting myself for personal gain here in this forum. If ever I've shared my own website in the past, it's been simply to share the resources I've found to help myself. I work as a volunteer, unpaid advocate now in Canada, and live on a weak disability benefit. I've no intention attempting to do now anything else, as my condition grew worse for me when I hoped to teach fellow First Responders. That resulted in a full-on reactivation of my own conditions, and a suicide attempt in 2015. So, I'm not in 'business' and will not ever choose to be so where my own experience with trauma and PTSD is concerned. Cheers.

Nathalie99
Nathalie99Administrator in reply to Darren_Gregory

Thanks for clarifying and for sharing your experiences, Darren.

That's what we are doing on here.

Well said Darren

Took me 9 years to get the diagnosis of PTSD, been misdiagnosed with so many things it was just frustrating because I had done my own research and knew deep down what I had after my trauma.

Some doctors and counselors can be quite incompetent!

Hidden
Hidden

Suffered for years with panic disorder. Depression became heavy with time. I tried to hide the depression from my doctor, because it raises insurance rates a lot. Had to play defense that way for years. One visit he said I looked depressed, and sent me to a shrink. I told him some of my issues, and he said it was severe PTSD. I was so clueless, I rejected that as impossible, because I wasn't a veteran! Yeah, I know... Ended up collapsing and wound up hospitalized and isolated. Haven't been treated for the three years since then. I'm stuck with this. This is the first place I've said anything about this.

waylay
waylay in reply to Hidden

<3

Lindyloo53
Lindyloo53Volunteer

Not really. I was diagnosed 49 years ago as having major clinical depression and treated for the same and have been treated for depression on and off over the years however about eleven years ago I came under the treatment of a great psychiatrist who treated my depression and suicidal ideation and attempts and he said he always knew there was more but he allowed a therapeutic relationship to develop and it was only then after all those years I disclosed my trauma background. I think even if I had been screened for it I would not have disclosed it as I believe you only do this when it feels safe to do so. I was then told by that dr that I had complex PTSD and that he had always wondered about my history but did not want to push me beyond where I was.

The P T SD was not diagnosed by the the but as non responsive depression

My first diagnosis was delayed-onset PTSD. Only problem was the therapist did not tell me! She only told the insurance company so she would get paid. She left me completely in the dark about my diagnosis, until I demanded to know several years after I stopped going to her. She made everything much worse for a long time by doing this. She was really a terrible therapist and gave me a secondary case of PTSD from her abuse.

I was diagnosed with depression and anxiety a year or so after the trauma when I finally had a break down. In 1996. It's taken me years and years to get a proper diagnosis and treatment, but EMDR last year really worked for me and I'm much better - less anxious and more in control of my life at last. However it's a shame it wans't treated earlier beacuse I went on to get ME in 2004 then Lupus in 2010 and then Fibromylagia in 2015. And I beleive that they are all likely to have happened as a consequence of unresolved trauma revving up my nervous system and immune system and having a lack of good coping strategies.

Nathalie99
Nathalie99Administrator

Thank you, everyone, for your votes and taking the time to share your experiences.

It really helps to share that although I appreciate it is something very difficult to talk about, especially since I can't make those responses private to the community (polls are public by default and it's not possible to change that).

It would have made a big difference had I known that I had C-PTSD right from the beginning. I believe spreading the awareness that it's not just veterans that get PTSD is really important so that many can find hope and a direction.

Nathalie (admin)

waylay
waylay in reply to Nathalie99

Agreed! I'll add that I was first diagnosed with major depressive disorder in ~1994 (although I've had symptoms since my teens) and generalised anxiety disorder a year later (ditto since my teens). After many many years in the MH systems in 2 countries, my MDD diagnosis was changed to refractory/treatment resistant, and after many more years (in another country) I received the Borderline PD diagnosis. Peter Levine's books introduced me to C-PTSD (I read the description and felt like he was describing me!)

Had first bout of depression at 18...then 21....suffered from social anxiety disorder and anxiety .various bouts of further depression . All treated as separate diagnosis . Read Pete walkers book and realised I had most of the symptoms of CPTSD and realised first trauma was attachment as baby mother had Post Natal depression. Then long term bullying for four years as a teenager .Then work related trauma as Police officer a 27 year career of front line policing . Now I know its CPTSD and that helps me understand my symptoms and behaviours and triggers . Now ready to do my best to heal as its cost me a lot in losing relationships and hurting people I love and care about .

I was first diagnosed with anxiety and depression in my teenage years, a few years later being diagnosed with PTSD, with a mention of it being Complex type just over a year ago. My heart goes out to all those with mental & physical struggles.

I think I more or less diagnosed it myself have had years of therapy n I am much stronger still affected if I pick the trauma back up am triggered and living in the past!!

I'm lucky I suppose u went through years of alcohol abuse to deal with trauma and life but stopped drinking 10 years ago and it allowed me to really focus on my inner child and what caused me to drink for oblivion and pain in the first place!!.

My GP and my parents have a lot to answer for .....he always brushed aside my illness and put it down to behavioural problems....I was 16 and attempted to take my own life my school work suffered I was badly behaved at school I truanted ran with the wrong crowd drank and unfortunately because I was never helped this behaviour and issues with self esteem being in the wrong relationships carried on until I was 38.....it was hell!!!

I had EMDR CBT you name it I had it....but none of it worked properly until I took stock of my situation alcohol was my escape from reality!!!

I didn't drink for 10 years and it helped me so much....I could then have treatment and deal with life my past the PTSD it's been a tough struggle and I am no way fixed but I do the very best that I can

I hope this helps even just one person!!

Be kind to yourself work through forgiveness and dealing with resentment I wish everyone well

😘

Trigger Rape

Refractory recurrent major depression, GAD, trichotillomania from early years. Borderline PD diagnosis at 36, a couple of years after I got chronic pain and became disabled (never agreed with this!). Drugs and booze in binges, but never addiction (not healthy, tho!). BPD diagnosis worse than useless. Almost nothing from PD service, but excluded from all other services! Warehoused for years. Had never defined my childhood as abusive or neglectful (no feelings at all until age of 23) until ~late 30s. I went through a series of traumas in my early 30s, including becoming physically disabled, going bankrupt, losing PhD, job, career, and long-term partner. Close friend died. Had a breakdown. (BPD diagnosis happened at this point!)

Then I was drugged by a stranger and taken to his flat, where I was raped multiple times. I only remember bits and pieces. I spent 11 months telling myself it wasn't rape, even though deep down I knew that it was. Eventually fell apart. Charity group therapy facilitator, pain clinic pain psychologist and Rape Crisis Counselor all helped me through it, and as more poured out of me about the past, they began to point out to me the various traumas I'd been through. Then I found Pete Walker's book, and it was about ME. 3 MH workers listed above all agree with C-PTSD diagnosis. All dubious about BPD diagnosis. Doesn't matter, though. No NHS treatment available...

Nathalie99
Nathalie99Administrator in reply to waylay

That's horrible that you had multiple traumas and went through so much, waylay. I am so sorry.

Being misdiagnosed is really horrible as it can have impact on our health (erong meds, lack of therapy or wrong therapy making things worse, judgement).

Pete Walker is a good resource.

I am very sad to hear that there are no therapies for C-PTSD on the NHS. That needs to change.

I have had a lifetime of incompetent "help". Most useless, some made life even worse for me for apparently no reason. Finally when no help was coming it resulted in me being sent to Prison. Where, finally, thanks to a wonderful.wonderful, drug therapist helped me even though i was did not fall into her person to treat guidelines as i wasnt strung out on spice or such but rather adrenaline (which mental health still dosent accept as being addictive, personally i think its the most addictive thing around, all violence, all illegal activities, all produce it). I found out Thoughts cause emotions, i had no idea! I used to have the emotion then thoughts followed on from the emotion, usually bad ones. The suggestion of keeping an Emotions diary and working backwards trying to discover what was causing the emotion in the first place has helped me discover its THOUGHTS that cause EMOTIONS NOT the other way round, i still dont always succeed, but now i see the thoughts an can mostly challenge them. 25+ years of professional help before that an they never told me even that!

Currently getting help, its a miracle, getting CBT which is opening up my thoughts to challenge thought pathways that were beaten into me as a child. Also seeing a Therapist, not to sure about him ,seems not to teach me anything, a "talk to a brick wall" type, where as i need answers, guidance, but i'm sticking with him. Finally seeing a Mentor which is helping me put into practice the theory that i'm being taught in CBT. I'm trying my best to challenge myself, its not easy, but for me, i really do need all three.

1) The Theory, teaching me these new ways of thinking.

2) Someone to express my frustrations too when life hit you again.

3) An finally, and i think most importantly, someone to help turn all these theory's into practical, POSITIVE, experiences. I keep telling the theorists at the moment, lol, its ok saying replace an challenge my negative thoughts with positive ones, but if theres never been any positive experiences to base them on , how can you lol? Thats why this Mentor is so good, to create these positive experiences others already have to challenge bad thoughts with.

I guess i'm trying to say. It might, it just might, be possible to get better. It just takes time. In my case 46 years, to find the people that actually have the brain power to actually help you, instead of treat you like just another number! I'm a long way from being fixed, but at last i'm finally, getting help that i've been asking for for decades! If i can get fixed theres hope for anyone lol!!!! I wish everyone well. You are NOT alone!

I was misdiagnosed with depression and anxiety for years until I started seeing a psychologist who then diagnosed me as PTSD. Gp's don't seem interested in my experience, it feels like you do the explaining while they are waiting for your 10 minutes to run out. My psychologist has been a God send, I can relate to so much that she talks about. I just wish most doctors weren't so flippant with this x