Coping With A Delayed Diagnoses

[TaeTM]

Hey,

I have been diagnosed with PTSD, but it wasnt until now, age 25, that I was finally diagnosed with CPSTD. Perhaps this happened because I was never really open and trusting of mental health professionals, but none the less, its a bit frustrating. My trauma ranges from childhood physical and emotional abuse, to rape, to multiple domestic violence.. why wasnt it clear sooner..

The diagnoses, learning to understand myself and how to hope has been overwhelming, the fact that I feel I should have known about CPTSD sooner makes me feel bitter. Has anyone else dealt with this frustration?

(I was also misdiagnosed at age 13 as bipolor and treated accordingly for a decade, so I'm sure that has added to my frustration)

 

[Isabelle]

Yes, I have found it very frustrating to have been misdiagnoised. This disorder is very new. I am so glad it is here. I too have the same pattern. I have found comfort reading the articles and learning why I do the things I do. I'm glad you shared.

 

[just me here]

yes, I was also a late diagnosis, almost 40 years since my first real trauma. EMDR may restore connections to memories older than that, I don't think I can really say I have the whole picture yet.

I can understand the bitterness about the late diagnosis, but I am really just so glad to finally find a description of symptoms that line up 1 for 1 with what I have been feeling for so long.

It is like I can finally make my symptoms understood, like they finally know what is really going on inside. I feel an overwhelming releif that I am not so crazy that they can't even find me on the map. I have a GPS, a guide, and we are on a trail out of here finally. I am not going to complain about how long it took for them to finally find me, I'm heading out, now!

This is a great place, the threads on here are all helpful in some way, Anthony does a great job keeping the wheels on the road, welcome and thanks for sharing. It is always good to hear from others with similar experiences.

 

[Tinyflame]

Welcome Tae TM :)

I thought it was all just 'me' and couldn't find any explanation or rhyme or reason why I felt as I did, sometimes. Now I realize there are other 'me's', out there. :)

By understanding the reasons for symptoms (and that they are symptoms) I can control and anticipate them better. In understanding some of the 'mechanics' they no longer puzzle me entirely as to the 'why' I may feel as I do or be tempted to react or respond as I might have in the past.

I hope you come to find some peace and effective help with (finally) a proper diagnosis.

 

[jenkins123]

I have actually just started a thread on something similar (see therapy-getting a diagnosis) so i was wondering how you, the sufferers, would feel if an ex significant other directed you to the idea you may have Cptsd if they were in doubt that you were getting the right therapy/diagnosis? Might you feel they were analsying you and it could make you more uncomfortable or would it be helpful? I know it would also depend how you felt about this person, and I am not sure how my ex feels about me these days, but I am asking in order to help him if possible. Thanks.

 

[Béatrice]

I was wondering the same thing. My friend told me she has PTSD, but I think it's possible that she has C-PTSD. And I don't know if it's OK for me tu suggest it.

 

[Iam]

Welcome to the forum Tae :) I am glad you found it as you will find many here who can relate to you whether they have PTSD or C-PTSD. Many of the symptoms are the same.

I have been diagnosed with PTSD, but have no doubt that it is C-PTSD as, like you my traumas stem from childhood abuse and rape. Any adult abuse has come from my mom and mild (is there such a thing?) emotional abuse from my husband, which has recently been addressed. Thing is C-PTSD isn't even in the DSM yet and therefore cannot be an "official" dx.

For me, it doesn't matter whether they call it one or the other. The therapy treatment for me is the same. I do wish that when it was originally suggested 9 years ago that I had not only MDD, but also PTSD, that my T had explained what that meant. All I was told was that I had a permanent imbalance in my brain chemistry. Of course a lot more is known now than 9 years ago. I guess for me, the main thing is that I am getting the help I need now and it is making all the difference in the world. Knowing that there is a reason for how I react and learning the skills to successfully manage it is the most important thing.

Coming to the forum has been a huge help, just knowing that I am not alone. I hope that you will find it as helpful as I have!

 

[shadowchaser]

Hi Tae,

I know what your going threw. In grade school when I was having black outs I thought I was time traveling and tried to convince others of it. Got actually told by the school counselor that I have an overactive imagination. When I started refusing to go around my abuser my mother had me put on meds that made me useless. At 26 I was diagnosed and finally started to get help. It's frustrating. You sit and think why me. You wonder why couldn't they have noticed earlier and did something to help me. But what is important is knowing now and getting the right help for it.

 

[Trinomial]

I was misdiagnosed, mismedicated and overmedicated for all of my teen life. The damage done by that was psychological (I'm crazy, I'm worthless, no self-esteem, it's my fault, etc.) as well as physical (kidney and liver damage).

It's beyond frustrating, especially if the abuser is the parent and they stick you in a psychiatric center to get drugged into a stupor. It's dehumanizing.

It wasn't until I was 24 that it was suggested that I am not mentally ill at all--that it's mental illness by-proxy. My mom is a bit of a sociopath. Both parents are alcoholics and drug addicts. I was the scapegoat and what I endured is inexcusable. However, I didn't enter into treatment for the trauma until a couple of months ago.

Quite frankly, I don't give a **** about the label or diagnosis. I am straight forward with my therapist. I talk about the the feelings I've supressed, about the traumas I've never dealt with, I'm working on grieving for my lost childhood and teen years, grieving for never having the loving caring parents to help guide me through life, grieving for the fact that those things that happened to me at the psychiatric center should not happen to anyone--especially adolescents and that it happens to hundreds, even thousands of people every day.

I want to feel better, so I am dealing with my issues--my emotions, my trauma, and how it's effected my perception and decision-making, etc. No label can accurately describe what I've been through and what I continue to go through.

I feel that my "humaness" comes before any symptoms or neurochemical imbalance. I can't make things right that happened in the past, but I have the rest of my life to learn how to care and love myself and deal with these problems.

 

[Fireball]

Hi tae TM!
I was misdiagnosed, mismedicated and overmedicated, too. When I started to have severe mental problems I went into hospital. I suffered from a depression and - now I know - from a very severe Dissociative Disorder. But they treated the depression and schizophrenic symptoms... I couldn#t cope with all those different neuroleptica. I tried so many! After that I have been so depressive and suicidal that I don't remember the time. They gave me so much "Benzodiazepine" (Don't know the English word...), that I became addicted to them. It was a very hard time not to take them any more. Two years ago I have been to a hospital where they helped me so much. I didn't take any medicaments anymore and they looked what will happen. And it was obvious that I suffer from CPTSD. Since then I feel so much better!
And it is very important to me to know that this did not only happen to me. It is fantastic to get to know you!

 

[Aine]

I have a diagnosis of PTSD and BPD, which is common for people who have CPTSD. My psychiatrist refused to diagnose me with CPTSD because it's not in the DSM IV. This means my treatment plan is some sort of frankapy, combining the treatments for PTSD and BPD. It is a pain.

 

[Kb3]

Hi Tae Tm, the same thing happened to me (being misdiagnosed Bipolar) but it happened in my thirties when an episode of post partum depression basically took me apart piece by piece. I was very vulnerable, and like you, untrusting of mental health providers. I did not tell them of my traumatic childhood and they did not ask. I ended up being medicated into a chemical lobotomy for about seven years.

It is very frustrating and disheartening to be diagnosed with a severe mental illness that you do not have. Correct treatment is delayed, and for me, a sense of hopelessness pervaded my entire existence. It didn't help that none of the medications that I was given had the intended effect, causing my "aggressive" psychiatrist to increase doses and combinations to stratospheric levels. For example, at one point I was on 30mgs of Abilify - a dose that is twice what schizophrenics are prescribed and actually over the legal prescribing limit. I was extremely paranoid, fatigued beyond description and had two small children to look after. I could barely leave my apartment, lost the ability to work, many friends, and if my husband wasn't the absolute saint that he is, I could have easily lost my marriage. My life on all these drugs was so bad that I thought of suicide every single day. If I hadn't gotten pregnant with my third child and been able to withdraw and stay off of all the meds (they don't pressure you to be on drugs while pregnant unless you are symptomatic)there is every chance that I would still be lying on a couch staring into space, wasting my life and destroying my family.

This happened to me when I was an adult - I cannot imagine how vulnerable that a 13 year old child would have been. Please do not feel you should have known about Cptsd at that age, it was for the professionals to have known how to facilitate communication with you and they let you down badly.

I'm glad that you are getting your life on track and wish you well.