I feel like I need to write something, but I don’t know what. I need to feel some connection to something other than depression and darkness. I am so tired.
I saw my GP on Thursday. She is a wonderful person and I know she is worried about me. I hate that I am such a burden. Just before I left her office she told me something that meant so much. She let me know what she thinks of me as a person. It isn’t often that I am a person to someone else. Most of the time I am a patient or client. This means a very controlled one way relationship with no chance to be real. It has its place, but it makes me feel even more isolated to have no real relationships.
Something in me snapped a few weeks ago. On my son’s birthday, I gave up. I have been fighting this darkness for a long time and I just couldn’t anymore. I have given up. I quit my meds that weekend. The doctors think that is the cause of me getting worse, I think it is a symptom. I reached the point where I can’t see a purpose to fight anymore.
I know I have been a pain in the ass to a lot of people. I am sorry. I don’t mean to be. I was desparate for help. I wanted a reason to keep going and haven’t been able to find one.
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?
In the past week I have been told this by two different hospitals. I hate hearing this and let my nurse know about it Sunday morning. Ok, maybe losing my shit was not the most productive thing. I was in a very emotional state and locked in a observation unit at the time though. Maybe yelling at her is understandable even if it was not the right thing to do.
My MH team has told me the same thing, ” you look fine.” What I now hear when someone tells me that is”we are not going to do anything to help you.” That is what it has meant, really. I have not figured out how mental illness can be diagnosed by looking at someone. I wish I knew what BPD or depression looks like. Maybe I could put on the right look to get help.
I wish they would at least talk to me before diagnosing me. Or look at my track record, it has not been good the last couple of weeks. If my MH team had listened to me 2 months ago I may not be in the crises I am in now. I was doing better then but I knew I needed help before it went downhill again. I told them that and they said “it looks like you are doing good.” I wonder if all of these professionals would think I looked good when I was standing on the bridge for 2 hours contemplating ending my life?
I have said it before, I think looking good is the definition of highly functioning for someone with mental illness. It in no way means they have their shit together or they do not need help and support. At least it does not for me.
P.S. One fun note from my last hospital stay: Saturday at dinner I started feeling a little sick. I had eaten half of the food on my tray and left it at the table for no more than 5 minutes to get up and walk a little. When I came back, a young girl was eating my blueberry cake. That was the only part of the meal that looked good. I was pissed but polite.
Monday morning at breakfast, that same girl sat with me to eat. No mention was made of my cake. It turned out she was a super nice person and we chatted and even shared our food with each other. We had a lovely morning together and a nice hug as I was leaving. I was able to sincerely wish her the best. She turned out to be the best part of my stay there.