Dear Julie,
I have DID and recently had a very rough time for about a month or so. Like you, I did not have anywhere locally to go for compassionate and client-centered care. I live in Georgia where the overall mental health system is very backward and the Community Mental Health Center system does not recognize DID and does not officially treat it. I have been an advocate for that to change for many years but was told that DID "is not a priority".
About 3 or 4 years ago I had to leave that system due to their refusal to accommodate me, and I found the private sector only slightly more willing to treat someone who is on Medicare and Medicaid and who needs long-term, intensive therapy. Many of the therapists I encountered were abomidable, some even abusive. Last spring I had one wonderful therapist who became pregnant and moved to Texas, and I have not really found a suitable replacement since. Now I have almost run out of my lifetime inpatient limit for Medicare (my primary insurance), quite frankly found myself fighting for my life. The one hospital locally that used to have a very good Dissociative Disorders program closed several years ago and during my last relapse it felt unsafe for me even to risk looking for an individual therapist again. I scoured the globe for some place that was art-based and holistic to take me on a scholarship basis, but none would do that. I was wished "Good Luck" and sent on my way. I told the admissions person of one program that would have been helpful to me that if I'd had a dollar for every time someone had wished me "Good Luck" I'd have the money to pay for my treatment by now! I knew deep in my heart what it would take for me to feel better but all these for-profit programs were too concerned about losing any of their profit (God forbid they should give anything away), that they just turned their back and walked away, leaving me to my agony.
I lay in my room, so triggered that I could hardly tolerate talking to people, switching dozens of times a day and feeling like the lowest form of life that nobody would reach out to help me. The only thing I could do was to ride it out and rest as much as possible until it ran its course and ended. I could not even stand to eat, and I wanted to die. Even in my worst hour my resolve was deepened that I never wanted anyone to go through the hell that I was suffering. I have had the goal for quite some time to start such a program as I was needing, and I told a friend of mine who had a consumer art gallery in Sautee, Georgia that as soon as I felt better I needed to start this alternative. My eventual goal is to make it into a medium-term residential art-based program that would be 50% therapeutic, and 50% vocationally based (for learning, making and selling artwork). Alot of other art-based programs I've heard of have skip over the therapeutic part and only focus on the vocational but I feel in order to truly meet the needs of people who are suffering with these kinds of disorders there needs to be a balance of both.
This woman in Sautee, Georgia I just mentioned recently applied for a small grant with which to help other people get such programs off the ground in each region of the state. I will have to start small and work up to making mine residential but I'm wanting to correspond with others who have similar goals to start these types of art-based programs. My though was that we could start a network of various centers nationally so that eventually there will be alot of suitable places for people to go when in crisis, and hopefully one day insurance and money will not be such a barrier. Ultimately these different centers could refer back and forth, and working in one could entitle you to receive care in another (it could come with a salary as part of the benefits package). I have some really innovative ideas about how this could work. The more survivors can work together on these things the quicker we'll have some real solutions. I'm encouraged to see that others are thinking in the same direction. Sincerely,
The Advocate