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Insanity
Written by Chloe on Wednesday, October 15, 2008
Recently, my psychotherapist and I discussed the chronology of various mental illnesses that I have had. We wanted to see how they might have arisen, and how they have interacted with each other. It doesn’t bother me if people think I am mentally ill, or insane, or whatever. I have never met anyone who I did not consider to be insane. So, here is my laundry list, in chronological order:
BIID
This came first. I have various early memories of this to which I am unable to attach a definitive time tag. I believe I was born with BIID. The first memory with a time tag is from when I was five years old. I started at a new school when I was five. I was very interested that there was a child with leg braces at this school. It was the first time I had seen someone close to my age with leg braces. It made me hopeful, since I knew that was what I needed. I asked my mother a lot of questions about this. It was polio, she said. It was a disease that people had. I wanted to know everything about it. My mother answered all of my questions, satisfying my curiosity. I was curious about a great many things, so I doubt that she had any suspicions. How many parents would suspect of their five year old child that she WANTED to get polio, she WANTED to be paralysed, she WANTED to need leg braces? My mother said there was a vaccine for it so that you wouldn’t catch it. I told her that I didn’t want the vaccine. She agreed to that, and I was never vaccinated. Later, when I asked her more questions, she said that some children had got polio from the vaccine. That was confusing.
My most intense childhood expression of BIID was from age seven through twelve. When I was nine years old I made my first, and only, deliberate attempt at self injury. I tried to break my back. I walked away with only a few abrasions. However, I was well aware that if my angle of impact had been slightly different I would have broken my neck and could easily have become a complete quadriplegic. It scared the shit out of me. Sometimes I have wondered about the person I would have been if I had become a quad that day.
BIID has never left me alone, but I have been able to manage it with occasional knee splints and bandages for most of my life. After my back injury in 2006, it reintensified hugely. It is getting worse.
DYSTHYMIA
I’m using this as shorthand for "Early Onset Dysthymic Disorder". It is also known as minor chronic depression. This started when I was seven years old. The trigger was finding out about being intersexed. It wasn’t about anatomy. It was about what I perceived as dire social consequences surrounding it. At ten years old another kid at school showed me his/her genitalia. I recognised that I was not alone. I also started reading books about intersex conditions. I became O.K. with this. I had three dysthymia free years from ten until twelve.
At thirteen puberty happened; other people’s, not mine. Periods did not happen until I was twenty. My breasts started growing a year or so after that. Very intense feelings of inferiority set in at thirteen. Dysthymia came back to stay for a while. I managed to get another three years of respite from age twenty five to twenty seven. Dysthymia came back again after a brief failed relationship.
At age twenty eight my insecurities and low self esteem led me into very abusive thirteen year relationship. Dysthymia continued. My early forties were dysthymia free, but then my intersex demons came back to haunt me again. Although those demons were finally laid to rest some years ago, the dysthymia has stayed. I’m not convinced that I will ever get rid of it again, but I don’t think it’s impossible. Often I get days, or even a couple of weeks, without any symptoms, particularly if I am in a wheelchair. Otherwise BIID exacerbates my dysthymia
OCD
Obsessive Compulsive Disorder started on my tenth birthday. Probably it was ready to go, and turning ten hit the start button. The first symptom was a compulsion to do everything by numbers. The number had to be ten or a factor thereof. I still do this. It always depends on factors of my age. If my age is a prime number then the system reverts to one based on right angled triangles. So, for example, if my partner asks me to get two cans of soup at the store, I can’t do it if my age is an odd number. I could get three cans if my age is either divisible by three, or is a prime number. This system applies to numbers of items, numbers of repetitions of an action, appliance settings, etc. Everything: number of pieces of toilet paper used, number of times I brush my hair, numbered items on a restaurant menu. A while ago my partner asked me why I had put a kettle on to boil at such a low setting. I told her it was the highest setting that was a factor of my age. "Ah!", she said. She knows all about this. Anyone who is around me much will eventually notice such things. If you don’t have OCD you probably think I’m a nutcase. If you do have it, then you understand; just like BIID.
Compulsions are what you do. Obsessions are what you think about. I have both. Often the two are linked. It seems that OCD is probably exacerbating my BIID. I am completely obsessive about BIID related stuff. I am compulsive about it too. For example, I am very compulsive about using the wheelchair at home. I never get out of the wheelchair to do something that I could possibly stay in it to do. This does feel like a compulsion. It starts every morning with a bed to wheelchair transfer. I really can’t tell how much of this is OCD related. But perhaps all of the BIID issues would be just the same without the OCD?
My obsession-compulsion pairs change periodically, usually after several years. Prior to the BIID/OCD interaction, the issue was bras. The result was that I now own around 140 bras, in every conceivable style and color. That particular obsession-compulsion is now completely gone. It will be interesting to see if at some point the OCD component of BIID shifts to something else.
SOCIAL ANXIETY DISORDER
This started when I was thirteen; puberty again. This one is hard for me to talk about. Feelings of inferiority, being different, low self esteem; all of these were extreme. I was robbed of my ability to be a social being. Here’s an example of what it was like: By age fifteen, if a teacher asked me a question in class, I would find myself unable to breathe, unable to speak; I would turn bright red, and start sweating; the muscles around my eyes would go into involuntary spasm, clenching my eyes tightly shut so that I was unable to see. I was well aware that I was making quite a spectacle of myself. This exacerbated the situation. Things gradually deteriorated until I was nineteen. I was at college. Other undergraduates would try talking to me. I pretended I didn’t hear, and I did not respond. I understood that I was in trouble. I knew that things could get worse. I could end up not being able to leave my room, in case I would have to talk to someone.
If you are following this, you will understand that psychotherapy was completely out of the question. That is an example of a social situation that would be absolutely terrifying. I had to struggle out of this completely alone. I did not have friends to talk to of course. At age twenty one I was finally able to make friends again. I made myself go to parties. It was VERY difficult for me, but I gradually made progress. At twenty three I had a boyfriend! Things continued to improve slowly. In 1992 I had my first television interview. I couldn’t breathe or talk. I wondered if my eyes would clamp shut. I kept my cool and focused on nothing else but taking a breath. It worked. Now, I am able to get up in front of a couple of hundred psychology students at the local university, just me and a microphone on stage, and give a talk about the psychological impact of being intersexed. I no longer have this disorder. I am cured! It is gone for good. My friends probably have a hard time understanding how I used to be. I am super social, and I LOVE parties!
Social Anxiety Disorder and BIID have a positive influence on each other for me. I have overcompensated for my previous lack of friends. I have many friends who are very loving and caring towards me. This makes it a lot easier for me to get emotional support for having BIID. Conversely, wearing leg braces or being in a wheelchair has given me even more social well being than I had before.
In writing this, I contemplated what I would do with a magic wand that had the power for me never to experience just one of my mental illnesses. This is the one. I completely missed out on teenage socialisation. The inability to make friends, the feeling of being unloved and unlovable, was all horrible for me. Other mental illnesses have been pretty bad, but I have had friends to help me deal with them.
MAJOR DEPRESSIVE DISORDER
This was triggered on June 13th 2004 by the break up of a relationship. Every time I woke up for the next six months the first thought in my mind was that I wished I was dead. For the first few weeks I could do nothing but sit on the couch. I stopped eating. Turning on the television was way too much effort, and I wouldn’t have been the slightest bit interested anyway. At some point, I’m guessing about a week or ten days into it, I answered a phone call from my psychotherapist. She asked me how I was doing. I said that I was pretty bad. She gave me lots of good advice. One of the things I did was to send out an e-mail to some friends, saying that I needed their help. (I am crying as I write this). People responded. One friend in particular spent a lot of time with me. She would come over to my place and make me help her prepare dinner for us. I ate. I had been starving myself; not as a suicide attempt; I just had no interest in eating. My friend saved my life. One does not forget such things.
The closest I came to a suicide attempt was trying to get struck by lightning. I spent a lot of time thinking about how to die. Every time I got in my car I would hope for a fatal accident (now I hope for a paralysing accident).
My issues were not just about the relationship. I still had not completely faced the intersex demons. I’m not sure how I was able to avoid major depression before. Both of my parents, as well as my sister, have had major depression. It’s in the family. Dysthymia is also a predisposing factor. The depression was gone after eight months. I stopped taking antidepressants after another two. This was my only definite episode of major depression. I know it can come back. One episode is a predisposing factor for another episode. It is easy for me to imagine life circumstances that would trigger another episode. It scares me.
It is possible that I had two prior episodes of major depression, one at age twenty one and the second at twenty seven. The boundary between intense dysthymia and major depression is very fuzzy. In any case, it was not diagnosed in these instances. At the time of the first possible episode I was not yet in a sufficiently good psychological state to be able to see a mental health care professional. I did see a psychotherapist in the second instance, but without a definitive diagnosis.
I’m not sure if BIID might trigger an episode of major depression in me. I hope not.
GENERALISED ANXIETY DISORDER
This appeared concurrently with the episode of major depression described above. After resolution of the major depression, the generalised anxiety remained. Although I do not have a severe case of this, I definitely fulfill the diagnostic criteria. I have discussed my anxiety issues at length with my psychotherapist. He suggested that a significant part of my anxiety is about the possibility of having another episode of major depression. This rings true.
I also clearly have substantial anxiety about BIID. I am worried about where it is taking me. I feel that I am desperately clinging on to sanity by doing the minimum necessary to keep myself functional in the face of raging out of control BIID. Ultimately I suspect that minimum will require paralysis, one way or another. I am anxious about this.
My biggest current anxiety concerns the fact that BIID is having a massive deleterious effect on my ability to earn a living. It is EXTREMELY hard for me to focus on work issues when it feels that my mind is so ravaged by BIID.
BIID IN PERSPECTIVE
BIID is the only one of my mental disorders not listed in the DSM-IV. Yet it certainly "feels" like a mental illness to me. I know full well that the thoughts and feelings I have in connection with it are not "normal". Currently it is having a greater negative impact on my psychological well being than any other mental illness. I am able to step back from this and truly feel why people might consider me to be insane because I "want" to be paralysed. It seems insane to me too.
I can also see the arguments that this is a "mental disability" rather than a "mental illness". If I am not in my wheelchair, then my mind is paralysed by extremely intrusive, constant, unremitting BIID thoughts. If I am in my wheelchair, then I have the functional equivalent of physical paralysis. I have no way out of being disabled no matter what I do.
Regardless of how one feels about categorising BIID, there is no doubt that it is a very serious condition with limited treatment options. I agree with those who suggest it is appropriate for it to be included in the DSM in order to facilitate such treatments. I have long since shed any sense of shame about having a mental illness. BIID is just one more on my laundry list.
Tags: Anxiety, Back Injury, Bandages, BIID, Depression, DSM, Dysthymia, Insane, Knee Splints, Leg Braces, Mental Illness, Paralysis, Polio, Quadriplegic, Self Injury, Wheelchair
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2 Comments
The recent flooding of our basement prompted me to go through boxes of stuff with water damage. Amongst these I found my old school reports. It is clear that signs of Selective Mutism began when I was 8 years old. Here is a quote from when I was 9: “[S]he is surprisingly shy in class and will only ask questions if [s]he thinks that nobody else will notice.”
There is absolutely no mention of such things from age 10 through 12. For example at age 11: “It is a great help to have in class a [girl] who sets a high standard, and this [s]he does while remaining normal, healthy and fun-loving.” Those were good years.
At age 13 the Selective Mutism kicked in big time and is evident in my school reports through 18. Here is one from 16: “[S]he is quiet to the point of appearing almost detached in class.”
I am SO thankful I no longer have this.
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1 On 9 June, 2011, Chloe said:
It is not every day of the week that I find out I have had one more psychological disorder than I thought I had. This morning one of you brought my attention to Selective Mutism. Thank you for this. I was unable to order my own food at restaurants until I was in my early twenties, a classic symptom of the disorder. Not being able to speak in social situations REALLY sucks!
I had assumed that my inability to speak was subsumed in Social Anxiety Disorder, but apparently it warrants a separate additional diagnosis of Selective Mutism. This morning, for the first time in my life, I have been talking about it (online) with others who have experienced this. The emotional intensity is huge for me and the tears have been streaming down.
As with some other things, I believe the root cause for me was the lack of an environment conducive to appropriate gender expression. Apparently this disorder is associated with a genetic predisposition to anxiety disorders. This certainly fits since both of my parents had generalised anxiety disorder, clearly to the point of dysfunction in the case of my mother. There is often comorbidity of Selective Mutism with other anxiety disorders such as OCD.
Talking of OCD, it appears that has now been decoupled from my BIID. The latter now has MUCH less of an obsessive component to it. Other OCD things have a tendency to creep in. Most recently I noticed that I have to visit websites in a specific order. When I get on the computer, transabled.org is always the fifth website that I visit (they are not in order of importance).
Treatment of BIID with leg braces and wheelchair continues to be of benefit for reducing social anxiety. I doubt if it will ever be reduced to zero but I no longer see it as a problem. Perhaps the Selective Mutism doesn’t have much to do with BIID, but I feel obliged to disclose it in the interest of not keeping anything hidden here.
Thank you again, friend, for the Selective Mutism link. I am keeping you anonymous because I value the privacy of my friends. It is entirely up to you if you wish to reveal the connection.