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.

What a Bad Day!!

Mental illness and the symptoms that come with it have taken another thing from me. My current husband wants a divorce because he has stated that I put to much of the past on him. Maybe that is true knowing all the shit that has happened.

For me this means that I have nowhere to live and that my son will not be able to see me because I will not have a room for him to stay in. Right now, so many things are up in the air. This also means that I may not be able to take or see any of my cats which are my babies.

I guess I will just have to take one day at a time at this point and hope that somehow things will work out in the end.

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.

Another Birthday

As a kid, birthdays were supposed to be fun. Kids in my class would have parties and invite almost the entire class. I did not get an invitation. I soon learned that I was never going to be invited to a party.

This started the years when I was just quiet and tried as much as I could to be invisible. This continued pretty much through high school and college. I did not make friends and through the years the number of friends that I have I can count on one hand.

This year with COVID, I actually feel normal for the first time. No one is having parties. People are having small dinners and get togethers. For once i I fit into the norm. A small dinner and cake with a few people is just right .

There is No Such Thing as a Simple Doctors Visit

Why does a person need all of these tests if they have any symptoms of an illness??? I really do not want nursing staff asking personal questions and then giving me the look.

We all know that look. How many medications we are taking or how many hospitals we have been in. Then there are the coexisting health issues that each doctor has to double and triple check. Why would I need to make up anything else and why would I want too?

Then there are the questions that they think they know the answers too. Substance use. Again, why? In fact I would get better inpatient treatment if I had that issue!! At least they disscuss the reasons that one has become reliant on self-medication.

By the time the doctor actually comes into the room, they go through a big sigh and make a big deal of sitting down. Don’t they know that I can tell they are not my therapist. I want to talk about the problem that brought me to this person. My psychiatric problems are handled by others, et they insist on asking about personal issues. I have learned to stay quiet. Normally, there is only a 15 minute time slot anyway.

Maybe if you read this, you will be able to laugh the next time at the doctors 🙂

Feeling Separated

Having complex PTSD is so hard. I feel like every program that I have been is focuses on safety and stabilization. That is where the programs that most insurances pay for end. Now, I am supposed to go home by myself and work with my therapist.

Why are there not support groups for us? There are not enough therapists who understand this diagnosis. The result is that there are not enough treatment centers. All I want is to be with other people who need to learn to express themselves. To have a safe way of processing my story and share other’s experiences of life with this diagnosis.

I just want to be able to feel normal. I want to meet others who share these feelings and experiences.

Another Waste of Time

After 3 kids and getting other issues fixed over time, I went to see a urologist today for the issues that I am having. Things started off well. The normal questions and the normal exams.

Then the doctor came in and talked to me. He left the room and came back saying that he needed to an exam to see where my organs were and if there were issues. Obviously, there are issues or I would not be there!!

Because, of the trauma I have been through, I could not go through with the procedures that he wanted and was sent away. I guess I just have to live with this problem. Why can’t all doctors understand about trauma?

I have one doctor that will use a twilight sedation to make her patients remain comfortable. Here, there is no help. Just a doctor who completely dismissed me. Why after going through so much do I have to constantly battle for understanding and compassion from those in the medical field.

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

Hearing Music

One night, about 5 months ago, I thought that my son had his music turned up to loudly. I was getting ready to go over to his room, when I realized that he was not there. I figured that it was something outside and I let it go.

The next night, as I was attempting to relax and fall asleep, I heard music again. This has been happening almost every night since. The music changes. It might be classical, 70’s, rock, or even tribal. No matter what kind of music, it is disturbing.

None of my doctors seem to know what to do about this new symptom. Each night it is different. Music , has become my nightly companion,. I just wish that the doctors could tell me more.