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Neurodiversity Awareness/Appreciation

Neurodiversity Awareness/Appreciation

Sunday, March 30, 2014

Blogging For Mental Health

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I don't know why I never found this before, but I recently came across the Blog For Mental Health project. The idea behind it is to get bloggers to write about mental health in order to help teach others about it and promote acceptance instead of stigma. I already kind of try to do that, so I decided to join the project! 

The site suggests that we talk about our own experiences with mental health. If you read this blog on a somewhat regular basis, you know that I have ADHD and Aspergers, and also depression and anxiety. But what you may not know is that my family's history with mental illness began long before I was born. 

My paternal grandmother had severe paranoid schizophrenia. When she began going through this it was back in the forties, when mental illness was way more of a mysterious, frightening, shameful thing. My grandma was in and out of institutions. A person could be expected to be committed for a year or more, even a lifetime. Common treatments for schizophrenia at the time were insulin coma therapy, electroshock therapy, and even lobotomy. My grandma, fortunately, did not have to undergo a lobotomy, but she went through at least fifty or more electroshock treatments before they stopped being popular. In the early 1950's, Thorazine was introduced as the first medication to treat mental illness, and caused my grandma to develop permanent tardive dyskinesia (involuntary movements... she would constantly hop around, bounce her knees and feet while sitting, and thrust her tongue in and out.) 


A patient getting electroshock treatment in 1942.
My grandma missed years of her children's lives when she was in institutions. Even when she was out, she was often not able to be particularly motherly. Her schizophrenia symptoms were too strong and disruptive, and the trauma of witnessing it was too difficult for her kids to forget.

Growing up, my brother and I only saw our grandma a few times a year, despite the fact that she lived only about twenty minutes away from us. We were at our maternal grandparents' house just about every weekend, often spending the night there, and we even temporarily lived there a few times. Their house was a second home to us. But Grandma's house was an odd place... only because we did not know her. When we went to see her, we did not bounce into her house and run off to play freely like we did at our other grandparents' house. We sat stiffly on the couch, closely supervised by our parents, and watched the adults have uncomfortable conversation. The conversation always turned to whether my Grandma had heard my mom or someone else talking on the phone about her, whether someone was plotting against her, etc. My dad would groan and yell at her and ask her if she had taken her medication. She smelled strongly of perfume and gave us really wet, lipstickey kisses, and her loud, screechy voice hurt my ears. As kids, we didn't realize that everyone didn't have a grandma like this... we assumed everyone had one set of warm, loving grandparents, and one somewhat frightening grandmother. But either way, going to visit her was never very pleasant. We could sense that my dad had a lot of negative feelings towards his mother, and that everything she said or did seemed to irritate him. 

The summer that I was nine or ten, Grandma was living in an apartment complex for senior citizens. It wasn't independent living, but mostly just an over-55-only complex. My grandma did not like to take her medication and would often skip it. At some point she had been put on a monthly injection instead, but she had even been skipping that.  One day the people who worked in the office there called my mom to tell her that Grandma was suddenly moving out... she'd arranged moving vans and everything. She was moving away to hide from whoever she believed was out to get her. My mom asked the office to stop her from moving and send the moving vans away, but they said they couldn't do that, since it was just an apartment complex and they couldn't force people to stay. So my mom told my brother and I to get into the car and we drove to the apartment complex. My mom warned us that the police might have to come, and that they might even put our grandma in a straight jacket. We were not particularly alarmed. We took it all in stride, deciding it might be an interesting thing to watch. I think if we had known Grandma better we would have been more scared of what would happen to her. But nothing really surprised us at that point. In the end, the police didn't have to come. My mom and my uncle talked my grandma into letting them take her to the hospital, where she got a shot that calmed her down.

It was not until a few years later that I first learned that Grandma had a mental illness. My cousin was visiting us. He was a year older than me. Since he lived in another state, he saw our grandma even less than my brother and I did. He definitely noticed the things about her that we had always taken for granted, like the way she was constantly moving. One day the three of us (my cousin, my brother and me) were in the car with my mom, and we were making fun of our grandma. I mean, she wasn't there with us, but we were mocking the way she moved around. I know it sounds horrible. But we were little kids, and we didn't understand. Finally my mom told us that there was a reason for how Grandma acted. She told us what paranoid schizophrenia was, and that our grandma had it. 

We still didn't really, fully understand. We got the feeling that we were not supposed to talk about it or ask about it in front of the adults... my mom had said it when my dad and aunt and uncle weren't around, and that was going to be the end of it. Knowing a little bit may have been worse than knowing nothing. Remember, I was a little odd myself, and since I wasn't diagnosed with anything at this point, I was just thought of as a weird kid, a nerd, a dork, etc. But now my brother and cousin also claimed that I was going to be schizophrenic like Grandma. They decided that they were immune to it because they were boys, but since Grandma was a lady and I was a girl, the only girl cousin in our family, I would be the one to inherit it. 

Flash forward a few years. I had been having a lot of behavioral problems, which stemmed from a combination of many things, including having undiagnosed ADHD and Aspergers, having difficulty with school work, being an outcast at school, and problems that were going on with my parents. My parents were very good at painting a picture that made it look, from the outside, like they were the perfect family. I was not very good at sticking with this plan. I was the wild, angry, sad kid who refused to pretend things were okay. My parents decided we were going to go to family counseling... all of us. After only two family sessions, in which my parents smiled and laughed and hugged us, the counselor announced that she only needed to see me. I was appointed as the Problem in our family. I was in and out of counseling all through high school, except for the times when my mom would refuse to bring me there because she was upset that the counselor wasn't "fixing" me quickly enough. I eventually ran away from home for three months, only coming home after multiple coincidences led the police right to my doorstep in a far away state. I was sent to a mental hospital. I don't know if this is still popular, but at that time, at least in the suburbs, sending kids to a psychiatric hospital was pretty standard for behaviors such as running away from home, underage drinking, joining a psuedo-gang, etc. I was in there with a bunch of kids who had been "committed" for things smoking weed or cigarettes, breaking curfew, and being disrespectul to their parents. Most of the other kids were quickly diagnosed with depression, and put on medication. 

I was another story. I wasn't very good at taking all of their psychological tests. I told them I didn't want to go home, admitted I believed in aliens and ghosts, and I tried to do a maze they gave me by starting in the middle and working my way out in both directions. The doctors knew my Grandma had schizophrenia. They also knew I had never claimed, or appeared to, have hallucinations or think anyone was after me. (I did say that I thought people were following me sometimes... because before I had run away, my mom had claimed that all of the police in the town were going to be watching me and that they'd call her if they saw me being anywhere where I wasn't permitted to be.) So they came up with a diagnosis of Psychotic Disorder Not Otherwise Specified. They put me on an antipsychotic medication, which left me lethargic and barely able to do the third-grade level workbooks they gave me in the hospital's "school" program. My parents agreed to the diagnosis... it would explain my behavioral problems over the last few years. 

The main point of this story is, in some way what happened to me was like a reflection of what had happened to my grandmother decades earlier. The mental health system had improved a lot by the time I found myself inside it. I only had to stay three weeks instead of multiple years, and electroshock therapy was never suggested as far as I know. The medicine I took had side effects, but once I stopped taking the meds the side effects disappeared. But one thing that was similar was the way people thought of me. I remember my mom warning me that my friends from the neighborhood, whom I'd hung out with before I ran away, might be scared of me now. I remember how, whenever I said or did something my parents thought odd or illogical, they would look at me hard and ask, "Have you been taking your medication?" After spending my childhood hearing my parents ask my Grandma that same question, it made me sick when they said it to me, and I would shout at them to never say those words to me again. I often sensed that people in my family were watching me, waiting for me to do something insane. I perceptively noticed two things... one, that my family members did not like to speak of my running away, the hospital, or my subsequent diagnosis with a mental illness, especially in public; and two, that they believed, by never speaking of these things, they were somehow protecting me or doing me a favor. 

I had been penpals, off and on, with my sixth grade teacher, for years. He had been someone who had recognized there was something different about me when I was in elementary school, but instead of shaming me, he had encouraged me to be myself and had appreciated my creativity and different way of thinking. While I was still in the hospital, I wrote him a letter telling him all about what had been happening. I wasn't allowed to send mail from the hospital without first having it approved by my parents and the hospital staff. So my mom took the letter home and mailed it for me. A decade letter, this teacher sent me an envelope full of copies of the letters I'd written him, as well as some of his replies. He thought it would be interesting to me to see how troubled I'd been in those days. One troubling thing I found in this envelope was a letter to the teacher, from my mom. When she'd mailed the letter I'd written in the hospital, she'd added her own note, swearing the teacher to secrecy. My mom asked him never to tell anyone about my being hospitalized, or about anything else I wrote in my letters to him. It went beyond basic confidentiality. She wrote that she didn't want this to "come back to haunt" me later in life.

In the years after that, I was eventually diagnosed with Aspergers, ADHD, depression, and anxiety... in different combinations, depending on which doctor you asked. I never met another doctor who believed I had a psychotic disorder. Sometimes I still wonder if it could be true. Why did I hate and fear that diagnosis so much? Because I hated the way my family and others looked at me. I didn't want people to look at me the way I had grown up looking at my grandma. 

Even without the pesky psychotic diagnosis, I still feel the effects of stigma. My parents and brother hate it when I mention any of my current diagnoses. My parents find it embarrassing, and my brother thinks I could be perfectly fine if I just tried harder or meditated or something. Several times when I pulled out my medication to take it during a breakfast out with my family, if someone like my (maternal) grandmother asked why I had medicine, my mom would interject, "For her allergies." Which is partly true... one of my morning pills is for allergies. But why is it perfectly okay to tell someone I take medication for allergies, while taking medication for depression should be kept private? 

On that note, why is it acceptable for someone to tell their employer they need to leave early to see their doctor for a blood pressure check, or to take off work for a few weeks to have and recover from surgery on a bone, but most people wouldn't dare casually mention needing to visit their psychiatrist, or needing to check into a hospital because of a mental health issue? 

I once blogged about how, when joining a particular Meetup, I wrote in my introduction that I had ADHD and Aspergers. My reason for writing it was to explain that I might seem very quiet or act a little differently. It was my way of saying, "This is me... this is what you get." The meetup organizer emailed me and said he would not approve my membership until I removed that sentence from my introduction. He reasoned that, since the Meetup was for socializing but not particularly for dating, it was "inappropriate" for me to include my "private medical information" in an introduction. That irritated me to no end. First of all, shouldn't it be up to me to decide what I was comfortable putting in my introduction, what I felt was most important for others to know about me? And second of all, if this was "private medical information," would someone who mentioned that they had diabetes or that they used a wheelchair, be told to omit that information?

I have so much more to write about this topic. But this post is getting lengthy. So for now, I will end with the original words of the pledge, created by Lulu, the founder of the Blog For Mental Health project. 

“I pledge my commitment to the Blog for Mental Health 2014 Project. I will blog about mental health topics not only for myself, but for others. By displaying this badge, I show my pride, dedication, and acceptance for mental health. I use this to promote mental health education in the struggle to erase stigma.”  

To read other Blog For Mental Health entries, check out the Official Blog Roll

DON'T FORGET TO TAKE MY SURVEY! ONLY FOUR DAYS LEFT! HURRY! RUN! GO TAKE IT! 





5 comments :

  1. It really is great that you continue to speak about your mental health. Don't let anyone stop you!

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  2. I think it's very brave that you are able to talk to candidly about this.

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  3. Wow, Angel. As you know, I really really appreciate all of the stories that you share and this was a big one to share. Thank you. I feel sad for your grandma because I'm sure she was very misunderstood and nobody should have to undergo the treatment that she did and I also feel sad for you that you felt you had to run away but I totally understand it too. It sounds like maybe it was a good thing for your family and your doctors in getting to a place where they were able to figure out how to help you.
    Again, thank you for sharing. You are awesome.

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  4. Even though there have been tremendous strides in treating mental health problems, we have a long way to go to total understanding. When there is no understanding, people react with fear. Your candid disclosure about your family history has increased my compassion toward those who live with difficulties like this. But you, I think, are tremendously poised and confident!

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  5. Thank you for sharing your story. While we've certainly made progress since the 1940's in the treatment and perception of mental illness, we have so much more to do. Blogs such as yours will help dispel myths.

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