Invisible Illness Awareness
It is apparently Invisible Illness Awareness week, and a lot of people on my friend's list have been posting about their own various struggles with such. I wasn't sure if I should participate or not, but I've been encouraged, and so here it is.
The big reason why I was going to bow out was because I have no official diagnosis on any of my problems. There are of course good reasons for this. For those of you who haven't been around long enough to hear the story in detail, or have seen me hint about it but wasn't sure what I was talking about, I was abused by the mental health system and the department of social services when I was a teenager (on top of the abuse I already experienced from my parents and the school system, only ten thousand times worse). Mentally and physically abused - yes I mean physical violence and yes I mean from staff members not other patients (although that too, which always went ignored) as well as being forced to take drugs I didn't need for years (yes forced, I was threatened with violence every time I hinted I might not take it on my own). As a result of that, I don't trust doctors as far as I could throw them, and tend to think the mental health system is ... on my less generous days, evil and everyone involved in it should be lined up and shot; my slightly less less generous days that its a deeply flawed system that doesn't attract the best people into it. Either way I don't feel the system should be trusted to fix what it broke in the first place. I've done much better on my own than I ever did under their oh so helpful gaze, I don't function wonderfully by average standards but a lot better than I have any right to be, a lot better than I did.
So, what are my invisible illnesses? Severe anxiety, depression (not so much anymore, but not so long ago it isn't worth mentioning) and a sleep disorder, this one in particular I believe - yes I know a rare disorder I by rights should not have, and yet after ten years of it I know exactly what my symptoms are and this is the only one I have ever found that describes what is wrong with me.
The depression and anxiety are fairly self explanatory, you don't have a life like that and not walk away with some problems. These were first recognized when I was as young as twelve, medication was prescribed and wonder of wonders it had no effect; it didn't seem to occur to everyone that my depression could come from being locked up and my anxiety from being treated like shit all the time, nope it simply must be chemical (and you went to college for how long?). It was probably around for longer and steadily got worse as time went on. At its worst (ages seventeen until twenty-two) I never left the house and in fact rarely left my bedroom, half the time I could barely get out of bed.
People generally believed I had these problems back then, although kept insisted they had to be caused by something else and I continuously heard that it wasn't really as bad as I was making it out to be and I needed to get over myself. Especially from my mother, amateur psychiatrist, I'd love to beat to death the person that taught her the phrase chemical imbalance, what a perfect excuse to absolve her of any responsibility for how I turned out. Naturally she doesn't think she was ever in any way abusive or belittling or otherwise lacking as a loving parent where I was concerned (she blames me instead), and as for the other situation ... it goes back and forth. She does know some things happened, since often I had marks (bruises, claw marks, sprains, half broken nose, and then there was that woman that tried to kill me, her and my father had to threaten them with a law suit to make them fire her, and they knew what she did believing me was not the question, they just didn't care), but on the other hand she often says that I'm exaggerating or even outright making up half of what happened and even if it is all the gods' honest truth, I should "just get over it" since it happened so long ago, right. Whatever she needs to tell herself to make her feel better I guess.
People I know now often don't think that there is anything wrong with me, apparently I do a much better job of hiding it, of appearing to be far more confident and comfortable in the world than I in fact actually am. I can be a bit of a control freak when it comes to myself, the way I act and the way I appear, part of which comes from being so severely introverted and not wanting to make a scene (which clashes in strange and interesting ways with my personality, eccentric aesthetics and explosive temper :-)) and also from not wanting appear to be weak or to illicit any offers of help seeing how much good that has done me in the past (I had to learn not to let any problems show since they would only be used against me later, you don't just unlearn such training). This probably explains why, despite that I have bad anxiety and frequently reach points of not being able to deal any more, I don't have panic attacks the way so many others with the same problems do. I internalize it all and just quietly exit as quickly as I can (storming off sometimes, might be obvious if you were really paying attention). Before you think I have it better, this is also probably why I get sick so fucking often; most of my illnesses are psychosomatic and tied directly to moments of extreme stress (and I have those very frequently) that I can not express otherwise.
Having met and talked with people in recent years who have PTSD (post traumatic stress disorder), I find myself wondering if I don't have some form of that myself, if that isn't core problem that ties the various mental/emotional problems (depression, anxiety, no self esteem, attachment issues, total lack of trust etc., etc.) together. I wouldn't be too surprised, everything I went through it actually makes some sort of sense. Some symptoms I know I have (as something I haven't yet discussed, my exaggerated startle response, and how quickly I can shift into fight or flight mode at even the smallest perceived threat), but other classic symptoms don't come up, like flashbacks (semi-frequent nightmares about being put back into that situation, yes; flashbacks of what actually happened there, no). Although I suppose that, like the panic attacks I don't have, it manifests itself in other ways (that I think about it a lot without allowing it to consciously register is a very good possibility; that its dialog replaying in my head more than visuals, since I'm not a visual thinker anyway, another possibility). But whether or not this is the case, it probably doesn't matter much in the end. I won't be looking to get the PTSD Stamp of Authenticity because, again as I have learned from the people I met, PTSD is not something that can be cured only managed, and I'm already trying to manage it all (and doing a better and better job of it with each passing year), having that official label wouldn't change anything I'm doing now so its not important to me to really know one way or the other.
Then there is the sleeping disorder, which reared its head very suddenly when I was sixteen. I went to bed so I could get up in time for school the next morning, only I couldn't sleep; didn't get more than ninety minutes of sleep, next day same thing and on it went. After a week I got to see my good therapist and she wrote me a prescription for sleeping pills and that was what pulled me through what little school I had left to me. I couldn't sleep without those damn pills. But eventually I was off my parents' insurance plan and around that same time I was starting to see some ill effects of living on sleeping pills like that and so I let them go. The problem has never resolved itself.
I called it insomnia for a long time because that was the word that I knew, eventually I realized insomnia was not the right term, that the problem was with my body clock like it wasn't working right or broken altogether (I was saying this before I ever heard the term circadian rhythm disorder). To describe as best I can, I am not able to control when I go to sleep. My body sleeps when it wants to, and that rarely has anything to do with how tired I ought to be or how early I have to get up (or how early I got up yesterday). And the time when my body wants to go to sleep varies constantly, there is no real consistency to it. Often it will alter more slowly, an hour later every couple of days or so, but bigger disruptions to my life or to my peace of mind (stress, travel, too much to do, etc.) means greater disruptions of my sleep cycle, anywhere between a sudden five hour difference to me suddenly pulling thirty-six hour days. Other than that, when I do fall asleep I do stay asleep (unless woken up and unable to go back to sleep quickly enough, then I'm awake until I reach the correct cycle time again) and my sleep is generally decent and restful, good thing because I need a lot of sleep (7-9 hours) to function properly. Its just the falling asleep, the cycle. Short of drugging myself (and I will do it, sometimes I just have to) there is nothing I can do to stop this.
In my experience, no one takes sleep disorders seriously, on the scale of things that cause you to be unable to function it ranks somewhere between a hang nail and a bowel cramp. Of course most of these people have never had a problem sleeping at all, or worse had a brief bout with insomnia years ago, got over it and are now really self righteous about what you ought to do to fix it. Like in ten years I never would have tried to basic sleep tips everybody gives you, like if it was really that fucking simple I would still have this problem ten fucking years later! My mother for a long time blamed it on laziness and wanting to avoid doing things I didn't want to do (that I missed quite a lot of stuff I did want to do because I wasn't sleeping right blew right by her), although I should note since I found the above linked site and forwarded it to her she has stopped making such accusations, guess she has a hard time explaining away the fact that for tens years I was perfectly describing the symptoms of a rare disorder neither of us had ever heard of.
I always love hearing from people that I should just make myself get up early anyway, because I'll be tired the next night and will go to bed earlier; even if I don't do it the first night I will sooner or later. Wow, why didn't I think of that? And here I am, suffering needlessly for a decade when the answer is right in front of my face! No, you know what happens when I do that? I don't go to bed any earlier the next day, my body has decided this is when it wants to go to bed and what little sleep I got the night before and how utterly exhausted I am does not matter. I could get ninety minutes of sleep (and yes, I've done this before, countless times) and I will still be awake just as long the next night. So let's say you have to leave the house by nine to get to work but you can't sleep until seven-thirty. You make yourself get up anyway, go to work, and then the next day you are still up until seven-thirty (and maybe a few minutes longer). Next day, same thing. And the next day. And the next day. How long do you think you would be able to continue functioning (keeping in mind that ninety minute time frame will keep shrinking on you)? How long before you are so tired that you're going to sleep no matter what you have to do that day; sleep perfectly soundly while the alarm rings in the background, pass out while getting dressed or making breakfast, or just turn the fucking thing off and crawl back into bed because you are so exhausted it actually hurts to move.
This is a big reason why I don't work any more (though the anxiety comes into play in a big way as well). I tried for over a year, with a job that allowed me to be a bit more flexible with my schedule than your average job would be (because they certainly believed I had severe sleep problems, they could both tell as soon as they set eyes on me whether I slept before coming or not, like I said I need sleep to function and when I don't get it function plummets quickly) and it didn't work. Because this is what kept happening. Even needing to be somewhere every day did nothing, even working into exhaustion (even for the less physical days there was still being out around people, I find that draining) did nothing. I would try, but I was frequently late anyway and sooner or later I just had to skip work because I wasn't able to handle the sleepless nights any longer. Over a year, and nothing I did ever changed. And the stress of that, going with so little sleep so often, of fighting against my body's natural impulses and trying to make it function in a way it didn't want to, make me sick. I was sick almost constantly when I was working. It was so bad that within a month of my quitting (for reasons that initially had nothing to do with this) everyone I knew started telling me how much better I looked, how much healthier I seemed. I ran into one of my old co-workers a month ago said the same thing. My health improved immediately, and since allowing my body to do what it wants to do (why ever it wants to do it) instead of fighting against it, its only gotten better; I feel better than I ever have.
Which doesn't make it easy. I honestly don't remember a time when I wasn't dealing with some anxiety, even if the severity fluctuates its kind of a way of life for me now; this is where the huge adjustments come in, and even as I've been living with it for ten years its still not easy. My sleep effects everything in my life, and everything in my life effects my sleep. I think this contributes a lot to why I can never keep track of time; I miss out on things I want to do, and while I can potentially force myself to be awake for a particular event I need at least a week's advance notice, and the preparation involves forcing myself into an insomnia state (I can't make myself get up, but I can make myself stay awake) until I have pushed the cycle forward to where I want it to be, its unpleasant and doesn't always work; every time something happens, stress or or even just minor changes like traveling, sleeping in a new place, having a guest here, weather changes, etc. are going to effect things, how much or how little I have no way of knowing, and honestly in times of dealing with stress of changes (even temporary ones) that's one more worry hanging over my head that I don't need; the only way I will ever have a job is if I can find something that I can do at home on my own time, I gave the nine to five thing (not literally those hours, but you get my point) an honest try and I physically could not do it, fighting with my body like that destroyed my health and even then I didn't win the fight nearly often enough to hope to keep a job, if I had kept it up I probably would have wound up in the hospital.
I am sort of amazed I'm able to maintain a relationship with both the sleep and the anxiety really. But Renee just seems uniquely equipped to handle me, and while I was convinced before I'd never be able to share a bed with someone for all these reasons, it hasn't been any problem. Her sleep schedule seems more flexible than most people's, and she's able to deal with and help as best she can with the stress not being able to sleep causes me (and that's not pretty, not by any means).
I'm trying to adjust to living on my won schedule, which is a lot of work right there even after a decade of this, because the rest of the world runs on a pretty tight schedule and its drilled into your head in a thousand different ways. One of those ways, a small and relatively unimportant one but just as an example, I will often last morning or last evening in reference to whenever I got up and whenever I went to sleep actual time of day notwithstanding; Renee doesn't quite get that, but its normal reference points that we use in our language and I've just not been able to purge it entirely. I do what I can when I can (living in the city helps with that, places that open earlier, close later, and several twenty-four hours places around; I wouldn't be able to do small town again, too narrow a window to get any sort of errands done), plan most things carefully ahead of time around what I think my cycle will look like, adjust where needed and give myself permission to let it go if things change. I have and continue to struggle with keeping track of time and maintaining a routine of any sort (we've seen this come up in a religious context for me over and over again), its hard to manage when your schedule is so changeable and unpredictable. Letting myself just go with the flow instead of trying to impose something articifical has helped, but I haven't hit upon that magic formula quite yet.
And that's about all I can think of to say on the matter. Hope you all enjoyed. :-)
The big reason why I was going to bow out was because I have no official diagnosis on any of my problems. There are of course good reasons for this. For those of you who haven't been around long enough to hear the story in detail, or have seen me hint about it but wasn't sure what I was talking about, I was abused by the mental health system and the department of social services when I was a teenager (on top of the abuse I already experienced from my parents and the school system, only ten thousand times worse). Mentally and physically abused - yes I mean physical violence and yes I mean from staff members not other patients (although that too, which always went ignored) as well as being forced to take drugs I didn't need for years (yes forced, I was threatened with violence every time I hinted I might not take it on my own). As a result of that, I don't trust doctors as far as I could throw them, and tend to think the mental health system is ... on my less generous days, evil and everyone involved in it should be lined up and shot; my slightly less less generous days that its a deeply flawed system that doesn't attract the best people into it. Either way I don't feel the system should be trusted to fix what it broke in the first place. I've done much better on my own than I ever did under their oh so helpful gaze, I don't function wonderfully by average standards but a lot better than I have any right to be, a lot better than I did.
So, what are my invisible illnesses? Severe anxiety, depression (not so much anymore, but not so long ago it isn't worth mentioning) and a sleep disorder, this one in particular I believe - yes I know a rare disorder I by rights should not have, and yet after ten years of it I know exactly what my symptoms are and this is the only one I have ever found that describes what is wrong with me.
The depression and anxiety are fairly self explanatory, you don't have a life like that and not walk away with some problems. These were first recognized when I was as young as twelve, medication was prescribed and wonder of wonders it had no effect; it didn't seem to occur to everyone that my depression could come from being locked up and my anxiety from being treated like shit all the time, nope it simply must be chemical (and you went to college for how long?). It was probably around for longer and steadily got worse as time went on. At its worst (ages seventeen until twenty-two) I never left the house and in fact rarely left my bedroom, half the time I could barely get out of bed.
People generally believed I had these problems back then, although kept insisted they had to be caused by something else and I continuously heard that it wasn't really as bad as I was making it out to be and I needed to get over myself. Especially from my mother, amateur psychiatrist, I'd love to beat to death the person that taught her the phrase chemical imbalance, what a perfect excuse to absolve her of any responsibility for how I turned out. Naturally she doesn't think she was ever in any way abusive or belittling or otherwise lacking as a loving parent where I was concerned (she blames me instead), and as for the other situation ... it goes back and forth. She does know some things happened, since often I had marks (bruises, claw marks, sprains, half broken nose, and then there was that woman that tried to kill me, her and my father had to threaten them with a law suit to make them fire her, and they knew what she did believing me was not the question, they just didn't care), but on the other hand she often says that I'm exaggerating or even outright making up half of what happened and even if it is all the gods' honest truth, I should "just get over it" since it happened so long ago, right. Whatever she needs to tell herself to make her feel better I guess.
People I know now often don't think that there is anything wrong with me, apparently I do a much better job of hiding it, of appearing to be far more confident and comfortable in the world than I in fact actually am. I can be a bit of a control freak when it comes to myself, the way I act and the way I appear, part of which comes from being so severely introverted and not wanting to make a scene (which clashes in strange and interesting ways with my personality, eccentric aesthetics and explosive temper :-)) and also from not wanting appear to be weak or to illicit any offers of help seeing how much good that has done me in the past (I had to learn not to let any problems show since they would only be used against me later, you don't just unlearn such training). This probably explains why, despite that I have bad anxiety and frequently reach points of not being able to deal any more, I don't have panic attacks the way so many others with the same problems do. I internalize it all and just quietly exit as quickly as I can (storming off sometimes, might be obvious if you were really paying attention). Before you think I have it better, this is also probably why I get sick so fucking often; most of my illnesses are psychosomatic and tied directly to moments of extreme stress (and I have those very frequently) that I can not express otherwise.
Having met and talked with people in recent years who have PTSD (post traumatic stress disorder), I find myself wondering if I don't have some form of that myself, if that isn't core problem that ties the various mental/emotional problems (depression, anxiety, no self esteem, attachment issues, total lack of trust etc., etc.) together. I wouldn't be too surprised, everything I went through it actually makes some sort of sense. Some symptoms I know I have (as something I haven't yet discussed, my exaggerated startle response, and how quickly I can shift into fight or flight mode at even the smallest perceived threat), but other classic symptoms don't come up, like flashbacks (semi-frequent nightmares about being put back into that situation, yes; flashbacks of what actually happened there, no). Although I suppose that, like the panic attacks I don't have, it manifests itself in other ways (that I think about it a lot without allowing it to consciously register is a very good possibility; that its dialog replaying in my head more than visuals, since I'm not a visual thinker anyway, another possibility). But whether or not this is the case, it probably doesn't matter much in the end. I won't be looking to get the PTSD Stamp of Authenticity because, again as I have learned from the people I met, PTSD is not something that can be cured only managed, and I'm already trying to manage it all (and doing a better and better job of it with each passing year), having that official label wouldn't change anything I'm doing now so its not important to me to really know one way or the other.
Then there is the sleeping disorder, which reared its head very suddenly when I was sixteen. I went to bed so I could get up in time for school the next morning, only I couldn't sleep; didn't get more than ninety minutes of sleep, next day same thing and on it went. After a week I got to see my good therapist and she wrote me a prescription for sleeping pills and that was what pulled me through what little school I had left to me. I couldn't sleep without those damn pills. But eventually I was off my parents' insurance plan and around that same time I was starting to see some ill effects of living on sleeping pills like that and so I let them go. The problem has never resolved itself.
I called it insomnia for a long time because that was the word that I knew, eventually I realized insomnia was not the right term, that the problem was with my body clock like it wasn't working right or broken altogether (I was saying this before I ever heard the term circadian rhythm disorder). To describe as best I can, I am not able to control when I go to sleep. My body sleeps when it wants to, and that rarely has anything to do with how tired I ought to be or how early I have to get up (or how early I got up yesterday). And the time when my body wants to go to sleep varies constantly, there is no real consistency to it. Often it will alter more slowly, an hour later every couple of days or so, but bigger disruptions to my life or to my peace of mind (stress, travel, too much to do, etc.) means greater disruptions of my sleep cycle, anywhere between a sudden five hour difference to me suddenly pulling thirty-six hour days. Other than that, when I do fall asleep I do stay asleep (unless woken up and unable to go back to sleep quickly enough, then I'm awake until I reach the correct cycle time again) and my sleep is generally decent and restful, good thing because I need a lot of sleep (7-9 hours) to function properly. Its just the falling asleep, the cycle. Short of drugging myself (and I will do it, sometimes I just have to) there is nothing I can do to stop this.
In my experience, no one takes sleep disorders seriously, on the scale of things that cause you to be unable to function it ranks somewhere between a hang nail and a bowel cramp. Of course most of these people have never had a problem sleeping at all, or worse had a brief bout with insomnia years ago, got over it and are now really self righteous about what you ought to do to fix it. Like in ten years I never would have tried to basic sleep tips everybody gives you, like if it was really that fucking simple I would still have this problem ten fucking years later! My mother for a long time blamed it on laziness and wanting to avoid doing things I didn't want to do (that I missed quite a lot of stuff I did want to do because I wasn't sleeping right blew right by her), although I should note since I found the above linked site and forwarded it to her she has stopped making such accusations, guess she has a hard time explaining away the fact that for tens years I was perfectly describing the symptoms of a rare disorder neither of us had ever heard of.
I always love hearing from people that I should just make myself get up early anyway, because I'll be tired the next night and will go to bed earlier; even if I don't do it the first night I will sooner or later. Wow, why didn't I think of that? And here I am, suffering needlessly for a decade when the answer is right in front of my face! No, you know what happens when I do that? I don't go to bed any earlier the next day, my body has decided this is when it wants to go to bed and what little sleep I got the night before and how utterly exhausted I am does not matter. I could get ninety minutes of sleep (and yes, I've done this before, countless times) and I will still be awake just as long the next night. So let's say you have to leave the house by nine to get to work but you can't sleep until seven-thirty. You make yourself get up anyway, go to work, and then the next day you are still up until seven-thirty (and maybe a few minutes longer). Next day, same thing. And the next day. And the next day. How long do you think you would be able to continue functioning (keeping in mind that ninety minute time frame will keep shrinking on you)? How long before you are so tired that you're going to sleep no matter what you have to do that day; sleep perfectly soundly while the alarm rings in the background, pass out while getting dressed or making breakfast, or just turn the fucking thing off and crawl back into bed because you are so exhausted it actually hurts to move.
This is a big reason why I don't work any more (though the anxiety comes into play in a big way as well). I tried for over a year, with a job that allowed me to be a bit more flexible with my schedule than your average job would be (because they certainly believed I had severe sleep problems, they could both tell as soon as they set eyes on me whether I slept before coming or not, like I said I need sleep to function and when I don't get it function plummets quickly) and it didn't work. Because this is what kept happening. Even needing to be somewhere every day did nothing, even working into exhaustion (even for the less physical days there was still being out around people, I find that draining) did nothing. I would try, but I was frequently late anyway and sooner or later I just had to skip work because I wasn't able to handle the sleepless nights any longer. Over a year, and nothing I did ever changed. And the stress of that, going with so little sleep so often, of fighting against my body's natural impulses and trying to make it function in a way it didn't want to, make me sick. I was sick almost constantly when I was working. It was so bad that within a month of my quitting (for reasons that initially had nothing to do with this) everyone I knew started telling me how much better I looked, how much healthier I seemed. I ran into one of my old co-workers a month ago said the same thing. My health improved immediately, and since allowing my body to do what it wants to do (why ever it wants to do it) instead of fighting against it, its only gotten better; I feel better than I ever have.
Which doesn't make it easy. I honestly don't remember a time when I wasn't dealing with some anxiety, even if the severity fluctuates its kind of a way of life for me now; this is where the huge adjustments come in, and even as I've been living with it for ten years its still not easy. My sleep effects everything in my life, and everything in my life effects my sleep. I think this contributes a lot to why I can never keep track of time; I miss out on things I want to do, and while I can potentially force myself to be awake for a particular event I need at least a week's advance notice, and the preparation involves forcing myself into an insomnia state (I can't make myself get up, but I can make myself stay awake) until I have pushed the cycle forward to where I want it to be, its unpleasant and doesn't always work; every time something happens, stress or or even just minor changes like traveling, sleeping in a new place, having a guest here, weather changes, etc. are going to effect things, how much or how little I have no way of knowing, and honestly in times of dealing with stress of changes (even temporary ones) that's one more worry hanging over my head that I don't need; the only way I will ever have a job is if I can find something that I can do at home on my own time, I gave the nine to five thing (not literally those hours, but you get my point) an honest try and I physically could not do it, fighting with my body like that destroyed my health and even then I didn't win the fight nearly often enough to hope to keep a job, if I had kept it up I probably would have wound up in the hospital.
I am sort of amazed I'm able to maintain a relationship with both the sleep and the anxiety really. But Renee just seems uniquely equipped to handle me, and while I was convinced before I'd never be able to share a bed with someone for all these reasons, it hasn't been any problem. Her sleep schedule seems more flexible than most people's, and she's able to deal with and help as best she can with the stress not being able to sleep causes me (and that's not pretty, not by any means).
I'm trying to adjust to living on my won schedule, which is a lot of work right there even after a decade of this, because the rest of the world runs on a pretty tight schedule and its drilled into your head in a thousand different ways. One of those ways, a small and relatively unimportant one but just as an example, I will often last morning or last evening in reference to whenever I got up and whenever I went to sleep actual time of day notwithstanding; Renee doesn't quite get that, but its normal reference points that we use in our language and I've just not been able to purge it entirely. I do what I can when I can (living in the city helps with that, places that open earlier, close later, and several twenty-four hours places around; I wouldn't be able to do small town again, too narrow a window to get any sort of errands done), plan most things carefully ahead of time around what I think my cycle will look like, adjust where needed and give myself permission to let it go if things change. I have and continue to struggle with keeping track of time and maintaining a routine of any sort (we've seen this come up in a religious context for me over and over again), its hard to manage when your schedule is so changeable and unpredictable. Letting myself just go with the flow instead of trying to impose something articifical has helped, but I haven't hit upon that magic formula quite yet.
And that's about all I can think of to say on the matter. Hope you all enjoyed. :-)