Many of us who live with a diagnosis of dissociative identity disorder have faced the conundrum of trying to find adequate mental health care. In this article I’m going to discuss the hard choices people like myself must make to find any kind of care at all in our current national mental health system.
I was very fortunate. The first therapist’s care I received was first-rate, not only that, but she diagnosed me correctly the first time. This unfortunately, is not usually the case for people seeking help with the symptoms of DID.
Just finding a mental health professional who will work with dissociative identity disorder is extremely difficult. There is not enough training offered on DID during the training of therapists, psychiatrists and psychologists to help them understand not only when they see it, but how to treat it. Even my therapist, Paula, who was an excellent person who dared to take case and help me had no training. She had to guide me to health by the seat of her pants, guessing and using trial and error to find the right treatments. Many people living with dissociative identity disorder go years and years before being correctly diagnosed. In fact, misdiagnosis is the number one reason many people living with DID either do not survive or take enormous amounts of drugs to treat symptoms that need special treatment from a very well-trained trauma therapist.
I didn’t know how good I had it until I lost her to a bankruptcy I was forced to take against the clinic she worked for when my (ex) husband became ill.
What I discovered and experienced was a morass of incompetent, disbelieving therapists and psychiatrists who were only interested in getting paid from the State of Illinois and giving me high-powered drugs. The list of diagnoses that were heaped up in my medical records is astounding. I’ll try to list a few below:
- Bipolar Disorder
- Schizo-Affective Disorder
- Borderline Personality Disorder
- Severe Recurrent Depression
- Depression with Psychotic Features
The above diagnoses are severe and the treatments are harsh. The one that caused me the most problems though, was borderline personality disorder. I was hospitalized for thinking of dying by suicide and the staff treated me horribly because I had that diagnosis. They accused me of being manipulative and acted towards me as though I had committed a crime and needed to be punished. Because of that treatment, I feel very much for anyone given a diagnosis of BPD. The way many in the “helping profession” think and feel about persons with this disorder is horrendous, and it is not helpful nor is it called for.
Then in 2005 I became so ill that I checked myself into a long-term mental health facility where I was to remain for over seven years. I “woke up” two after having been there for two years and was promptly taken to the office where the staff informed me that dissociative identity disorder did not exist, and that it was all made up in my mind. I was told never to speak about my diagnosis with my assigned therapist, any of the other residents of the facility or any of the staff. I left that place in 2012, and to be honest other than their telling me the above, they treated me well.
It does not help at all that there are those who claim to live with DID who do not. I’m not saying they are lying, nothing could be farther from the truth. What I am saying is that there are lots of people in DID community who have other disorders and believe wholeheartedly they have DID when they don’t.
Here’s an important note to anyone questioning your diagnosis: If you read that last paragraph and it made you wonder if you are faking it, you are not. People caught up in this disorder who do not have it will think that it is someone else, not them, who are malingering.
The draw to be a person with dissociative identity disorder is clear to see. The disorder has received a lot of publicity and seems to many who do not have it to be sensational and desirable. The feeling that it sets one apart from the crowd and makes you special, that is the biggest draw of all.
Everyone who lives with DID goes through stages of feeling set apart and special from those whom we call “singletons”, but for someone who is malingering, their emotional attachment to the perceived special-ness of DID is totally different. They love the label, and they will do whatever it takes to be what they perceive proves they live with the illness. As I’ve already said though, these folks do not mean harm, they are just lost in their own diagnosis whatever that may be.
Also, to be clear, there are other diagnoses that can have dissociative symptoms. Borderline personality disorder is very closely related to dissociative identity disorder. People who live with that diagnosis can experience fugue states and dissociative episodes. The difference is that they do not have separate and distinct personality states.
Well, back to being between a rock and a hard place.
Another aspect of treatment so many living with DID experience is the many drugs that are often pushed upon us.
I’ve had doctors prescribe everything from Lithium to high powered anxiety medications when there are drugs to treat DID. Sure, they could help me with some of the accompanying problems that come with the disorder such as depression and anxiety, but taking the amounts that were prescribed to me only served to numb me out to life and keep me sleeping often so I would not cause any trouble talking about my real diagnosis. I have told at least two psychiatrists that I did not want to take the drugs they were given me and was told if I did not take them, they would fire me as a patient. Really?
When I left the long-term facility, and could see a psychiatrist outside again, I didn’t even bother to tell them I didn’t want to take their meds. I would just fill them, and promptly dispose of them when I got home. I wasted a lot of money, but hey, you do what you have to.
I’m sure this piece is resonating with a lot of people out there. Finding good help in our current mental health environment is difficult and sometimes impossible. I’ve seen around twenty psychiatrists and at least ten therapists in my thirty years of working through these issues. Paula was the only one I have ever seen who helped me. Thank God, I was given the opportunity to return to her long after the bankruptcy so we could finish the work we had started. She retired in September 2015, and I wish her all the good things that life can offer.
Insurance is another thing that stands in our way on the road less taken. Paying for a therapist or a psychiatrist costs and enormous amount of money. If you find your insurance balking at paying for your care, then fight them. You can appeal your case and take them to court if you must. Don’t take their obstinate negative answers, fight! You may not succeed, but by god just the fight will encourage you. There are some organizations willing to help like Beauty After Bruises who offer grants to help pay for care.
I want to leave with some words of encouragement. I know it is hard to find help, but it is out there, and people like myself and many others in the DID community are working hard to train up and coming therapists and psychiatrists about our disorder.
While you are struggling to find adequate care, keep in mind that there are lots of people out here in Internet land who truly do care. We spend our spare time writing, discussing and fighting for the changes to the system to help you and ourselves to get better.
Join the fight, don’t give up, and keep reading.
“We are not grand because we are at the top of the food chain or because we can alter our environment – the environment will outlast us with its unfathomable forces and unyielding powers. But rather than be bound and defeated by our insignificance, we are bold because we exercise our will anyway, despite the ephemeral and delicate presence we have in this desert, on this planet, in this universe.” Aron Ralston, Between a Rock and a Hard Place
NEVER, EVER, EVER GIVE UP!!!!