I reached a milestone in my transition last week that I didn’t expect. The last 7 or 8 months have been focused almost entirely on my health and survival. Of course I think about my transition, but I am at a point now where it isn’t a focus. I am female and that’s it. The only time being trans has been an issue is in the health system, where some people seem to be less educated about it.
The medication I am on now has fewer side effects, which is great, but it does make me sleepy and I have very vivid dreams. Last week in one of those dreams I was staying in a beautiful old building. It was huge, with three stories, marble floors, stained glass and old oak railings and steps. This building was the housing for the Canadian Olympic team and I was somehow on the team. The coolest part of all this was that I was a female athlete!
This was the first time I remember being female in my dreams. After pretending to be male for 40 some years, I think my brain must have been conditioned to dream of myself the way I lived my everyday life. Now my dreams are starting to match the reality of who I am.
Needless to say, I woke up happy and thouroghly confused about how I managed to get into the Olympics. With so many negative things happening in my life lately, this was a nice and unexpected boost.
That is what I would love to be able to tell my doctor when she calls next week. I would love to wake up one morning and think this. There really isn’t any reason I can see that I shouldn’t be feeling great today.
I met with an intake worker this week at an organization I am excited to start going to. It will provide social contact and an opportunity to feel a little productive again, all in a supportive environment. My new counsellor and I have moved past the get to know you stage and are starting to do some real work. Today, my former employer let me know they are finally going to send me the backpay they owe me, so housing is not an immediate problem. Overall, it has been a good week, but I have been anxious all week. There is no particular reason. Everytime I leave home, I am just waiting for something bad to happen. It is almost like I am holding my breath until I get home again. Home feels safe but danger lurks on the other side of the door.
My logical brain hates this feeling. Unfortunately, logic doesn’t make the feeling go away. I think I am becoming immune to logic. Logic has no place in my life right now. Logic has always served me well and now it just makes me feel worse about myself.
I get angry every time I go to the outpatient center for services. I am sure I do not understand everything that goes on there, but it is hard to see three or four people being paid to chat and joke with each other when I am told there is no funding for the treatment I need. Don’t they realize how inefficient the system looks from the users point of view? Do they understand that the salary of one of those administrative workers could pay for private treatment of 5 people in need?
I have been fortunate enough to connect with a couple of non profit organisations that have provided some of the help I have been looking for. In all cases, they have been efficient, timely and kind. They have always been very clear about who I needed to talk to and what I needed to do. They have always provided follow up, also. An example is this week. After helping me access a government social program, I thought the non profit’s involvement was done. They had gone above and beyond already in my eyes to make the whole process as easy as possible. They called me though and let me know they were still helping and would be setting up an appointment to complete forms that I would have to fill out once I am in this particular program. In contrast, when I tried to do the same thing in the public health system, everyone I talked to sent me to see someone else. In the end I spent almost a month to get nowhere while it took only a week for the non profit to have everything set up.
Unfortunately this does not seem to be the exception to the rule. The non profits seem to do a much better job at providing services with fewer resources. While the non profits are client focused, the public health system seems to be administrative focussed. The system is a maze that is hard enough for the people that work in it to navigate. It is nearly impossible for patients to navigate. The fact that they need positions called Health Navigators should be a clue that something may be wrong.
I am forced to rely on this system for my treatment, though. While the non profits offer excellent and very valuable services, they are limited to social and employment services for the most part. Meanwhile, the government of BC adds layer after layer of beauracracy to the public mental health and addictions system to try to fix it. The system just seems to get farther and farther removed from the reality of the people living with these illnesses. It would be great if the government would recognize these organizations that are working well and try to emulate them. Imagine how much more good could be done in an organization run as effeciently as the non profits but with the resources the public system has. Imagine the lives that could be saved if care was provided by a system that was actually patient focussed.
DBT is a recognized treatment for BPD. This has been proven through clinical trials and it has been used to help many patients. I was introduced to DBT while I was in hospital, even before my BPD diagnosis. I found it to be very helpful for me, even in the small doses offered during my stay. It was encouraging when my doctor let me know I was on the waiting list for the DBT program offered by the health authority’s outpatient department. After a little research, I found that an actual program run the way it was intended by the founder of DBT consists of much more than what I had seen. I had only been given a cursory introduction to some of the concepts. If that was helpful, the full program may actually make it possible for me to live a fulfilling life!
That was three months ago. Last week I found out I am not on the waiting list for DBT. The waiting list is in fact closed because the resources to offer the program are not sufficient to meet the needs. There are DBT programs available in the private sector, but the cost is around $10,000. That is impossible, especially considering my illness is keeping me from decent employment. I often wonder if the cost of not treating mental illness is actually more than the cost to the government of an effective mental health system. When you consider human suffering, I am certain an effective system would be much cheaper.
So here I am with a diagnosis, the knowledge that a great treatment exists and no access to that treatment. At least the system can offer medications, right? Did I mention that no medications have been shown to be effective in treating BPD? There are medications to help with some of the symptoms. My latest one seems to be pretty effective so far for sleep and seems to work some for mood stabilization. What I mean by that is that I find I am much more calm about this lousy situation I have found myself in. I still think it is lousy and it is hard to see any hope.
For now I will take what help I can find and continue to search for more. The hope I had when I left hospital is gone, though.
So far I have made it through another week. Two days ago, I wouldn’t have given good odds on my being here today to write this. I am so tired of just making it through each day. I want to feel like I am actually living each day. Maybe I would be happier if there wasn’t a part of me that knows that I could feel better than I do right now?
The biggest accomplishment for me this week was an interview with social assistance. I think it went well and hopefully I will have some income soon. An advocate from a local nonprofit organization went with me. Having the support, even just as a cheerleader made it easier. Not being able to work and relying on social assistance has brought up some unanticipated feelings, though.
My father was a conservative southern republican. His views on social assistance were not kind to the people who need it. I haven’t really thought about that in years and years. My views and his have obviously always been miles apart. I can only imagine what he would have to say if he were to learn that his only son is, in fact, a daughter who is not able to work because of mental illness.
Anyway, while I was growing up I often heard his take on anyone who couldn’t work. I heard how mental illness is not real in his eyes and how anyone could just suck it up and work if they really wanted to. This week I have found myself thinking his thoughts about me. I have never thought that about anyone else, but I am applying his standards and his stigmas to myself. It really sucks but I can’t seem to convince myself otherwise. I feel so ashamed for being how I am and not being able to work or be productive. On top of that, I am ashamed for sharing in any part of my fathers conservative views, even if they are just applied to me.
All this coupled with extremely dissapointing news about DBT treatment has made this one of the tougher weeks for me. I think I will probably just hide at home this weekend to try to recharge for week ahead. I really just want to be halfway normal and be able to find some joy in my life. I hope I can get there someday before I destroy myself.
When I heard my diagnosis of BPD, I thought it was pretty grim. I had responded quite well to DBT though and my doctor said she had put me on a waiting list for the DBT program the health system offers. That was three months ago, the wait for the program was supposed to be 12 to 18 months. Day to day life hasn’t been easy, but I knew the help I so desperately wanted was in my future. Today I found out I am not on the wait list and they have in fact closed that list so I never will ne on it. The help promised to me that has kept me going, is not available. They have given me a diagnosis and shown me it is possible to overcome it but they will not provide the treatment to help me. I am tired and can’t keep fighting on my own. What I have been holding on for isn’t there any longer.
I have lived with my BPD and depression for many years without looking for help. I am honestly not too sure how I survived, but I have made it so far. Now that I am looking for help and being honest about how messed up my life is, I can’t see going back to suffering in silence. Being open about it is leading to changes and right now they are pretty hard to take.
This week and last I am facing the fact that I am not totally sure when I will be able to work full time again. Before I opened up, I was not being fair to my employers. I knew there were times they were not getting what they paid for because I wasn’t capable of concentrating and doing a good job. I was always worried they would find out and fire me, so I would leave before that could happen. This is the longest I have been unemployed since I graduated from University, though and it is a strange place to be in. I feel so useless and unproductive. At least when I had a job, I was forced to get up, shower and dress to go be unproductive. Now I can do it unshowered from the comfort of my own bed. I don’t like it at all.
No job also means I will have to rely on employment insurance or income assistance. I know this is a legitimate use of these, but I still feel like a useless burden. The limited income will mean moving to subsidized housing. There is nothing to be ashamed of in any of this, my illnesses are very real, very crippling and very much a threat to my existence right now, but I can’t help but think I am taking resources someone more deserving needs.
This really sucks when all I wanted was good counselling and help with my depression and BPD. Unfortunately this is the help I can’t find. I struggling to find a reason to keep going. Without this help I could be a burden to others for a while, and what is the point of that? There is a huge battle going on in my mind most of the time now and depression seems to be turning it’s foothold into a stronghold.