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.
I know that how I feel isn’t necessarily a reflection of reality. I know I have no reason to believe my GP is actually tired of me and will tell me to find a new doctor when I see her Monday. I know going to the spot I dream of ending my life at isn’t a healthy coping strategy. I know dreaming of ending my life isn’t healthy. I know I should eat better. I know I should exercise more. I know I should go outside more than 2 or 3 times a week.
What else do I know?
I know how I feel is absolutely my rrality right now. I know I cry worrying about the only health professional who listens to me leaving me. I know the spot I dream of ending my life at calms my mind. I know dreaming of ending my life brings me peace. I know I don’t have the motivation to eat better. I know I don’t have the energy to exercise. I know going outside even 2 days a week is an accomplishment right now and more than 3 is next to impossible.
It may not look like much to anyone else, but I am trying really hard. I know what everyone says I need to do and I know what I am up to. I am doing more than I am up to right now. Without help, this is the best I can do and the fact that I am still alive must mean I am doing something right?
A nurse called me last weekend to check up on me after I was discharged from hospital. The phone call got off to a particularly bad start because the organizatiin he works for had consulted with a doctor I had made it perfectly clear I did not trust and would not work with anymore. It only got worse when he asked me how I was. I was pretty honest, at the time I was in a lot of emotional pain and was frustrated with the whole system that was supposed to help me. I did not see much hope in ever receiving help or of ever feeling better. He said, “I understand.”
I know I get agitated when I am frustrated, but I think no matter what mood I was in, this would not have been received well. I said, “Oh, you have been in anguish and not been listened to at all by supposed caregivers?” He said, “No, but I can understand.” That is when I called bullshit. He admitted he had never been in a situation even remotely like mine. There is no way he could understand. He has never had to live in fear of what he might do to himself but looking forward to the relief it might bring at the same time. I am a pretty smart person (despite what some of these caregivers think, you can be intelligent and diagnosed with a mental illness) and I know I could never come close to understanding this without living it.
For me, it would have been much better for him to say he understood what I was saying or that it sounded painful or something instead of pretending he knew what it was like to be me. I have a lot of respect for people who share their lived experiences with mental illness. Some of those stories really resonate with me and sometimes it is nice to know you aren’t the only one. I have zero respect for someone assuming they understand what it feels like. If he would have told me he had lived with mental illness and had gone through these dark moments, I would have accepted that he truly understands. No one’s experiences are going to be just like mine, but it possible to come to a close understanding of others struggles if you have struggled in similar ways.
There is still a question mark because I am not entirely convinced. Last week the title would have been There is No Hope with no question mark. This is a huge improvement in just a week that maybe I can climb out of this dark and painful place I am in.
I have been begging for help from a system that does not consider the individual. They have not listened to me, they have witheld medication as a form of punishment when I didn’t agree with them and they have dangled the carrot of hope in front of me only to yank it away. For over two months I have worked with a mental health team that has done nothing to help. When I ask them for help, I am usually given reasons why that help is not available to me and offered no alternative. Now, after being in hospital three times in the last two weeks, it looks like things may be shifting.
One week ago, I left a meeting with my mental health team feeling completely hopeless and alone. It was after office hours but I reached out to the only two people who I thought may listen and understsnd. I left a message for my GP and an advocate in the health system who helps trans people find proper care. These two were my absolute last hope.
Over the last week, both of these individuals have listened to me. Both have understood what I was saying. Both have spent hours trying to help me.
I realize one single person will not have all the answers, but these two have mapped out a path at least. Identifying resources in a complicated system and accessing these resources is a herculian task when I am depressed. Sometimesl being given a step by step plan is just the encouragement and help I need. The first thing that happened was my doctor getting in touch with my mental health team to tell them I would no longer work with them. This has made me eligible for services that can really help. My doctor also mapped out what I need to do to access these services and that process is now underway.
I have also been told about some organizations that my mental health team never mentioned. I visited one on Monday and in a few hours I had worked with two different advocates to help me with income and housing. These are two things I had been asking my team for help with for over a month. If they had pointed me in the right direction, these would have been cleared up by now.
I can see a much better path ahead now but it has been a fight to get here. It seems impossible at times, but help is out there. I felt like giving up so many times. I spent agonizing sleepless nights crying and talking to crises lines. Just saying it isn’t always easy doesn’t even begin to describe how bad it is and what it takes to keep going. At times all that kept me going was those two allies holding hope for me. I guess faith would be more accurate because I don’t honestly think they knew at the time what to do. It can be done though.
I know the system isn’t right, also. If I had been listened to and if the professionals I was working with had been aware of the resources available in the community, it would have saved me a lot of pain and probably saved the system a lot of money. Help should not be this hard to find and help should have never left me alone and feeling worse. I have started including members of my province’s government in my tweets, including copies of my blog posts, in the hopes that the system can be improved so others may not have to face these same difficulties alone.