Some would say I am lucky, I have managed to find and keep a job. It doesn’t pay much but it pays the rent. In a few weeks I will be through my probation period and have benefits. Keeping the job has been a struggle. Finding help while working is a bigger struggle. It seems the mental health system is only geared towards people who do not work a traditional Monday to Friday schedule. Outpatient services, a lot of private counsellors and most support groups are only available while I am working. If I were on social assistance, I would be able to access these services but I wouldn’t have the money to pay rent and eat. Now I have the money for these neccessities, barely, and I have to worry about keeping my job without the services that might improve my quality of life. It seems the health care system would be interested in helping people who need it and have jobs. Why not help before it becomes a crisis that makes working impossible? I can’t be the only one struggling with this, can I? Is the health care system only there to cater to its employees or is it there to serve the needs of the patients? Right now I have to choose between work and services that may help me if they ever receive proper funding. Work wins out, it is more reliable than the current healthcare system and it provides for basic survival.
A smile is always on my face, the tears are all on the inside.
I care more for others than myself, because I don’t like who I am.
I am a model employee, I couldn’t stand for someone to see my imperfections.
I am a great listener, it is so much easier than talking about myself.
I am always ready with a joke, it deflects attention away from my real issues.
I am always willing to help, helping others is the only worth I see in myself.
The last few weeks have pointed out the difference between worry and anxiety to me. Right now I am dealing with both and they both suck.
I have felt really on edge the last several weeks. It feels like my fight or flight response is stuck in overdrive. I am not sure exactly when or how it started and most of the time there is no reason for it.
My response was to figure out the cause and fix it. Because financial security has been on my mind, I impulsively applied for a full time job last week. By the end of the week, they had offered me the job on the condition that my references are ok.
Now I see that financial security was a worry. I have almost found a solution for the worry, but in the process have added a couple more worries. Now I have to worry about the reference checks and whether I am able to work full time again.
The whole time all of this has been happening, I still have that uneasy feeling. I can see now that it is not related to anything in particular. It is just a general ominous feeling that something bad is going to happen. This is my anxiety. My one big hope right now is that the job will work out and full time work will help at least distract me from this anxiety for 8 hours a day.
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.