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.
A few interesting observations and conversations from the hospital. Some are quite serious others were not so much but helped pass the time.
On my first visit to the ER, I couldn’t bring myself to say I was considering suicide, even to a nurse or doctor. I talk freely about it now. I have realised that is the only way to get help and it reflects poorly on no one to feel like this. It is a symptom of the illness, not a character flaw in me. Someone who had brought a friend in for an od asked me why I was there. I said I want to kill myself. She was a bit taken aback at the frankness to start, but we had a great conversation about it.
On the bad side, another person who brought a friend in because of drugs was calling a relative for a ride home. After the call she reassured her friend by saying, “I told them you bumped your head at work. I don’t want anyone to think you are some psycho suicidal maniac.” How hurtful and insensitive can you be while sitting among patients with mental illness?
I learned about knitting on a round loom from another patient. He was using it to pass the time and as a distraction technique. He actually sold a hat to an orderly while waiting. It looks like something I would enjoy, it is on my list to try.
An eighteen year old and I had a conversation. After we had been talking for about a half hour she wanted to know if I would mind her asking me a personal question. I said no problem, and she asked why my voice was deep. I said because I am trans. She was totally taken aback. She said she wouldn’t have guessed. An unintentional compliment that made my week!!!
I really appreciate scholarly posts that point out where the mental health system is letting down itas patients. Those posts are so necessary and hopefully someone in government is paying attention.
This isn’t a scholarly post. I am too frustrated right now to try to come up with statistics or quotes. How about a non-scholarly article from a user of this system that has been let down. Surely there is a place for those, too?
The system sucks!!! It seems everyone in this broken system has their own agenda. Oh wait, one thing I have learned is that they are not called agendas, they are mandates. I have yet to find the department whose mandate is to treat patients as individuals and to listen to their needs. I am a diagnosis. After the diagnosis it is just a connect the dots game. My diagnosis is this so the next action is this and then we move to this. No flexibility at all and no where in this action plan is there actually room for the patient to be heard.
I feel like I have broken my leg and they keep putting a cast on my arm. They think they are fixing the leg but they won’t listen when I say the cast is on my arm. Their mandate says a cast is in order and the cast peoples mandate says that in this particular year they can only put casts on arms.
What kind of bullshit system is it? I want help, I have begged for help, I have tried to do what I can for myself and still the system totally discounts anything I say.
I had a doctor yesyerday that actually listened to me. They are in short supply from what I have seen. I think that class has been dropped from psychiatry school. Anyway, the doctor listened, the doctor understood, the doctor made the referrals based on a plan he and I came up with together. The department he referred me to ignored the plan and came up with their own. To be perfectly honest, they were not creative enough to come up with their own plan. They just did the exact opposite of what the doctor asked for. Maybe they knew he was the “one” who listens to patients and thought the best thing would be the opposite. Maybe they just read it backwards and upside down. Maybe their mandate says this is what they must do. At least I have another cast on my arm.
The system is broken. Speaking from personal experience, the system is worse than broken. Taking someone who has a mental illness that makes suicide a viable option and showing that patient there is very little hope any other way is worse than simply broken. Last year there was an incident where a young person was discharged and walked directly out of hospital and completed suicide. There have been several incidents like that as a matter of fact. I totally understand it now. When you are in that much pain and seeking help only results in the frustration of not being heard, being totally misunderstood, being discounted as a person and having your well being not matter, it is really really hard to see any other choice.
The system isn’t just broken, the system sucks and it is killing people. What has to be done for this to change?
I don’t think it is any secret that the last couple of weeks have been tough for me. My depression has taken over again and I am struggling. I just got off a long phone call that made it more clear how this disease feeds itself and I wanted to write about it while it is fresh on my mind. Maybe rereading it will even help me in another hour when it has taken over again, because I am certain it will.
There is a post on Facebook called “I brushed my hair today.” If you haven’t seen it and want to understand more about depression, I would recommend reading it.
I have kept quite about my depression for way too long. That has made it worse, but that is one of the ways it feeds itself. Shame and isolation just serves to deepen it. It is really insiduous that way. If shame itself isn’t enough to isolate me, depression makes everyday tasks seem herculean at times. Finding the energy and motivation to shower or brush my teeth can take hours and hours or even days sometimes. How could I face anyone if basic hygiene seems so daunting? That just makes me feel worse about myself which again just worsens the depression.
Today my depression has me questioning whether I deserve to ask for the help I need. I am in dire need of help right now. I know the professional I need to talk to tomorrow and I know she would not tell me to stop bugging her even if she thought I was. I don’t think she has ever thought that, though. What my mind is telling me tonight is that I am expecting too much. I shouldn’t ask for the help I need at this time. I have received help in the past and it is unreasonable to look for it again. I need to do this on my own this time. I have no right to ask for help. I am not worthy of receiving help.
The truth is, what I need to ask for is not unreasonable. The help I am seeking is impossible for me to do on my own at this moment. I am fought out and need a little outside support to help me get back on my feet. The truth is, I can ask for help. I have always had trouble asking for help and I wouldn’t be asking unless it was absolutely necessary.
Depression causes me to believe the lies that keeps me stuck in the depression. Right now that seems so clear. I am glad someone took the time and effort to point it out to me tonight. I also know myself well enough to know that no matter how clear it is at this particular moment, by tomorrow it will mot be clear. All that will ne clear tomorrow is that I am not worth the help and it would be selfish to ask for it. Tomorrow all that will be clear are the lies depression fills my mind with.
If you feel you should stay silent, don’t believe it. If you feel you aren’t worthy of help, don’t believe it. I know it isn’t always that easy. I am there too. When those lies are the only clear thing in my mind tomorrow, I will read this and try to take my own advice.