Complex PTSD Changed Me

This post is one that those in the field of psychology debate. To me, the belief that your trauma is what you make of it is complete crap. What happened to me has altered the way that I view the world. Innocuous activities become a source of panics and flashbacks.

One of my main issues is trusting each people. Throughout my life, people have revolved according to what my abuser needed. My abuser caused me to fear the people and places around me. That began at age 3. A 3 year old believes their caregiver. By believing, I was scared that if we were out someone was going to take me or hurt me.

Being touched was painful. No was not a word that was respected or listened too. Obedience was necessary to survive. Even if that meant pain. Eventually, I just inherintly knew was expected of me. I followed knowing that I did not have a choice. To the day, I cannot even pick out a place to eat or answer what my favorite color is because that was drilled into me.

Don’t Take No!!

For years, I have been fighting the insurance for treatment that would help my C-ptsd. Finally, I received the letter from the insurance today that I can officially get the treatment I need without driving 2 hours or more.

I do not want to stop here. I am hoping that my new therapist will help me or an internet savvy person will help me to start a website. Someplace where people can go with this diagnosis to share resources. Where providers who may be willing to provide treatment pro Bono or on a reasonable sliding scale can meet potential patients.

Something has to change. There needs to be more awareness about this illness. Mote patients that do not keep taking the revolving door in and out of the psychiatric unit. Patients who are over medicated. Things need to change and I have a passion to do all I possibly can.

Trying to Find Treatment for C-PTSD is a Nightmare

For 17 years, I have been diagnosed with C-PTSD along with other psychiatric illnesses. Along with C-PTSD I have DID which is a direct result of the trauma from the past.

I have a name brand insurance. That insurance company does not have anyone in my area or even within driving range who treats my condition. When I have called those on the list that is provided on their website, the providers do not even know what DID is let alone how to treat it properly.

Maybe I expect to much. I expect for a psychologist to be familiar with my diagnosis and to know the best treatment methods in order to improve my symptoms. There is not any medication to treat the symptoms of C-PTSD. The treatments effectiveness relies on the experience of the therapist.

I am so worried that I am going to backslide into darkness again. Right now, I am hopeless about getting any help for my symptoms at this point. I am sure that there are others out there with the same issue. Why is it that a psychological condition is not taken as seriously as a medical condition. A doctor would not send a person with kidney failure to a cardiologist, yet that is what they do for mental illnesses. We are not all the same. Please start to realize this!!

Am I More Than Just A Business Transaction??

My treatment team up until roughly 4 years ago was excellent. They listened to my symptoms and concerns. Sometimes, we discussed my art or photos that I had come across. Even the names of people that had played a significant role in my life were remembered.

Yes, it is ultimately a profession and money is exchanged for services, yet at that time I felt like an individual. Like they actually cared about me and my mental health. If I was doing poorly, they often could fit me in for additional sessions and made a point to communicate with each other and exchange notes as well as concerns.

Today, I have different providers. They care about money. Before I even see them I have to pay or my session will get cancelled. I have never not paid them. In fact, at one point this year, I had a credit. My therapist rarely remembers what I say from one session to the next. Often I have to answer the same questions week after week about who a person was to me. I often think to myself, why don’t you just take notes??

After providing medication lists and hospital histories, they act like I have not provided them with any records. For those of you who have had or are in treatment, how are your providers? Do you trust them to assist you as much as possible? Do they care about more than money? I am just curious.

C-PTSD and Challenges

C-PTSD. Five letters that seem to divide those who have it from those who do not. I often hear, I got through —-, why can’t you just get over it? How long are you going to sulk? It was a long time ago, can’t you just put it behind you? Why do you need to go back to treatment?

All of these questions discount what a person has been through and how their brain has responded. Maybe, psychology classes need to teach more about PTSD and C-PTSD. Even if everyone goes through a traumatic experience, they will all have different reactions. Only a certain percentage will develop the diagnosis. For example, all soldiers do not have PTSD. Only some of them do. Society seems to be doing a better job understanding that and veterans are receiving better treatment. Although, I am sure there is more to learn.

I am going to go with what I have read in peer reviewed journals, learned through groups, and learned through talking with others who have the diagnosis. No one chooses to have C-PTSD. It sucks!!! Nightmares, flashbacks, hyper vigilance, dissociation, anxiety, and depression. Add in that most of the people I have met believe that they could have stopped whatever happened including me. By the way, NO medication is effective for any of these symptoms. Those who have this diagnosis often need years of therapy and other treatments. They need to learn to feel safe in their own body.

Treatment is a persistent issue among patients. Medicare does not cover any long term treatment. Private insurance, if one is lucky to have it, does not have any long term facilities for trauma that are in network. What does this mean? Patients wind up cycling through the same safety level of treatment when they need more. More costs a lot and when you are unable to work and don’t have rich parents that treatment becomes out of reach.

In my quest for treatment, I called many of the residential centers whose treatment times range from 3 months to 18 months. Only one accepted my insurance and it was out of network. I was told I needed $5,800 up front and they could only guarantee that it would cover 28 out of the recommended 90 days. Why go? I found it odd that I had been on a unit for safety and stabilization over 20 times. I did the calculations and it would be cheaper to provide the higher level of treatment in the long run. Other centers wanted as much as 12,000 a month and were 6 months or more.

Then there are the people who think because a person has a mental illness that they cannot do a job and are inferior. My experience came when I went to school to become a social worker. I was trying o get a BSW. My advisor seeing that I already had a bachelors, recommended going right to a Masters program. I was so excited to get accepted. I wanted to work with elderly patients or in a hospice. My placement was in neither of those areas. The school placed you without any input. After my first field placement interview I was asked to come in to see the head of the department who quickly told me all of her doubts about me being able to do this.

Fast forward to getting a field placement and being there for 6 days. Time for the faculty advisor to come in and see how we were doing. I was the last one that she saw and she was not alone. My field supervisor was in the room with her. I was told that the head of the building did not want me there any longer because I was diagnosing clients. I had been a teacher, I knew better than to diagnose anyone. None of my notes or reports showed this. What was going on? It did not matter. My mental health was to bad to be in a placement. I did not understand. I had completed all of my work and was doing well in my classes. Then I was told that the principal had also checked my background. I knew it was public knowledge that I had lost custody of my kids. That is why I did not want a placement in a school or an environment with a lot of children. I was told that the parents would be upset. The school provided me with a medical leave.

Today, I still want to be a social worker band assist families and patients with navigating the medical system. What chop would even want me???

C-PTSD comes with its own stigma and oppression. Maybe, patients do see things differently, yet that would seem to be a strength not a weakness.

What the Doctors Don’t Tell You! * May Trigger*

Asking for help in itself is hard for most of us. Asking for help with the symptoms of a mental illness seems impossible. There is the stereotype that still runs through our society that somehow a person with a mental illness is weak or damaged. That they cannot take care of themselves or have chosen to have this. They are just not fighting enough.

Then a person goes to the doctor. For me, I was told that within 3-5 years that I would feel better. It has been 16 years and I still feel as horrible as on day one. Even to get to the right medications took months. Sometimes the side effects would make me feel worse or cause new symptoms to creep in over the first few weeks. Give the medication time the doctor would say. I do no need time when I know that I feel worse.

My body was no longer my own. It began with the medications. Then came the sleep routines, the mediation, the ECT, and with that the memory loss. My brain was now trapped behind a barrier. I was no longer in the drivers seat. Just a passenger in a car that did not have a final destination.

The doctors do not say that your friends will feel so confused about how to treat you, that many of them will politely bow out of the friendship. They do not say that your spouse will be overwhelmed and feel like they are helpless, causing them to leave. If there are kids and the mental illness is severe enough, the system will make sure that you lose them unless you have 10’s of 1,000’s of dollars. Divorce, loss of children, loss of friends, loss of self, and a constant pressure that just gets worse over time because you are expected to be well. Somehow all of these things miss what the doctor says. Reducing symptoms is sometimes not possible and some people are treatment resistant, causing them to live in limbo.

For me, the doctors missed a lot that I wish that I had known. Maybe I could have prepared myself or at least knew the reality of the future that I was facing. B

Will I be Able to Deal with the Inside?!

New therapist. Nothing like opening up old wounds again. At least I am being encouraged to work with parts and not rush this work. It just seems to take everything out of me. I am mentally and physically exhausted.

My system has so many roadblocks up. How am I going to get through them all? Are my parts going to cooperate? What if I cannot handle things and melt down? Maybe I need some meltdowns. They would allow me to get through all of the emotions that have been held in for so long.

Getting Care for Complex PTSD is Near Impossible

Last year, I had Medicare. I was told that they did not cover any long term mental health care. This year, I have private insurance. I was hopeful that treatment would be covered. Instead, I have been met with the same obstacles as always. Since I do not have a substance abuse issue or an eating disorder, long term treatment is not available in network.

The places in the country that will accept my insurance out of network still want $10,000 or more for a deposit. I cannot afford that. I am not sure that many people could. Now, I am stuck without the level of care that I need. I know that I cannot be the only one out there struggling with this.

Mental health care in this country needs to change. It should be affordable for everyone, not just those who have thousands of dollars to put out up front.

Another Battle for My Kids

I had to be inpatient for a few weeks to work out a few internal conflicts and emotions. While in the hospital, I achieved and surpassed my goal. In fact, this is the first time that the techniques I have learned inside the hospital work outside of the hospital.

The downside of going inpatient is that I need to complete tasks in order to get my kids back. Sometimes it is hard knowing that I am still trying to get my bearings, yet I need to get the necessary paperwork in order to see my kids.

I had not gone in the hospital for a few years. In that time, my kids have become teenagers. Sometimes, I just want them to get to 18 so I can see them without all of these restrictions.

Having a mental illness does not mean that one will automatically lose physical custody of their children. It does mean that there will be a long and expensive battle full of experts and questioning of the kids. Luckily, my kids said that they still wanted to see me. I realize that I am lucky to still be able to have a relationship with them and watch them grow.

Resources for PTSD *Trigger Warning**

There are very few resources for people who have childhood trauma. First, there are few groups where people can gather to get assistance and support if they are struggling with symptoms. More outpatient groups are needed in order for those with symptoms to not have to turn to the hospital.

Then, very few doctors know how to treat someone with trauma. The symptoms can change depending on the time of year or if a client is triggered. Most psychiatrists do not know how to handle a patient in which suicidal thoughts run like background noise and self harm is pervasive. They cannot prescribe a pill to take the memories away or decrease the intrusive thoughts.

The cost of childhood trauma is far worse than what happened. Therapists are scarce and often do not accept insurance. For those on a limited income, therapy becomes out of reach. Unless one has a name brand insurance many hospitals that treat trauma are not accessible or affordable. A stay at a specialty hospital where all of the staff are trained on the techniques to help a client can start at $30,000. Again, for someone struggling with the outcome of childhood trauma, this is impossible to come up with.

General units do not seem to help with PTSD and trauma symptoms. Often, they are only acute care designed to just get someone out of a crisis. The problem is that a patient who is having and increase in nightmares, flashbacks, intrusive thoughts, or other symptoms is discharged and has no where to go. General units do not have staff trained to handle trauma or they are so short staffed that there are few around to help.

It seems to me, as a patient, that there is a big hole in the mental health system for those who have experienced childhood trauma. We need more doctors and affordable care. Insurance companies need to be aware that just because a client is not symptomatic one day does not mean that the symptoms will not increase in the following days.

Childhood trauma needs to be addressed from the doctors and therapists to the insurance companies. Once a week therapy is not enough. Limiting the number the number of sessions only increases stress and could mean that there is not any help when memories come up. The huge gap in the system needs to be fixed. Those with childhood trauma and PTSD should not have to hang on by a thread because there is no affordable help.