Writing of Chronic Illness:
How and why do you write of something that’s as ever-present in your life as the eyes you look at the world with, the air that you breathe, or the internet in your net-addict life? Where do you start approaching it from, as it is impossible to untangle from every other facet of your life, due to its presence permeating anything and everything else?
Well, you just talk about it. You talk about your life, and you talk about the thing, and you don’t try to separate the two.
As for why I am writing about this thing, even though reading others’ accounts of the same malaise actively makes things tougher for me? Because I know it helps others. Though helping others isn’t actually my goal here. I’m writing of this thing for the simple fact that I feel like it, and it’s a blog, a personal blog, at the end of the day. Besides. There are plenty of people I care about who read these things, and this is as much a part of me as my penchant for writing in poetic prose or being annoyed by spelling mistakes.
It is not my goal to tell an uplifting story, give you life lessons, or be a spokesperson for every chronically ill person, not even for everyone who shares my own sickness. It might happen, because, again, this is a story of handling things, and of my life, but that’s not the goal. The goal is to write for the sake of writing. To share for the sake of sharing. The goal is to be. But we’ll get to that.
What is the sickness I suffer from? Chronic depression. And while I could “convince” you it’s an actual disease, I’m not going to bother. My piece might end up showing it, but if you’re interested in arguing with me about why it’s not a real disease, you can just skedaddle out of here. I’ve got better things to do than convince you. Or rather, I don’t actually have the energy to try and convince you. So I won’t try. And we’ll get to that too.
I also suffer from general anxiety, but that seems like a parasitic affliction. It actually leaves me now and then. And of course, the two are in deep symbiotic relationship, where depression makes anxiety flare up, and anxiety can make depression worse, though the latter doesn’t happen as much.
It is Chronic:
Before I get to anything else, I want to cut to the chase – this is a chronic illness. There is no cure. I don’t expect I’ll ever be “healthy.” The biggest “lesson” I’ve learned is to not expect or hope for that, but to learn how to manage the disease. How to manage my life with it.
You know how in Alcoholics Anonymous they say how long they’ve been clean? It’s not just a measure of affirmation of their commitment to staying clean, and proof of their success thus far. It’s because they accept they will never be not addicts, just inactive ones, who are clean. For now.
Chronic depression, unlike acute bouts of non-chronic depression, is like that. I can be content. I could be happy, even, but it doesn’t mean that I’m not still suffering from it. Just that I’m not suffering from it at the time. It’s a constant companion, and something I know is always there, even if I can’t think of it at times.
Let’s talk of my lived-in experience with depression now. I have a very good memory. I remember a lot from when I was still in kindergarten. I remember being a happy child, who loved playing, running around, and I remember not just having fun, but being happy. I stopped being happy around the time I entered first grade. It’s possible it happened a bit later, in the second or third grade, but it’s not like you think in those terms at the time. But I have not been happy, not even once, between that time and about two months ago. In case you’re wondering, I’m 32 years old. Yes, that’s quite a long time to not be happy in in a culture that tells you that being happy is your main goal in life. Money? We’re told that’d make us happy, after all.
Have I been depressed for about 25 years then? It is possible, but unclear.
I can tell you of how I started using the internet around the 5th-6th grade (since I only started learning English in the 4th grade, and have never been into the Hebrew side of the internet, that should not be surprising), and how at least from the 7th grade, I was an internet addict. At the time there was no 24/7 internet connection plan, so we paid by the phone usage, which was expensive between 8 AM and 8 PM, so I’d wake up early and go online before school, and spend a while online late at night. Before the internet, I spent most of my time home reading books, after the internet, I’d spend most of my non-internet time in bed, waiting to be able to go back online.
During junior high school, my mother took me to art therapy. Did I feel I needed it, at the time? Certainly not. I always wondered why she took me, because I didn’t think of depression, or in those terms, at the time.
I’m gifted. I’ve always had good grades. I got used to not studying. That’s certainly part of it, but I remember during high school’s final year and a half, when I had to study for tests, and just couldn’t. I’d sit in bed, or lie in it, and I wouldn’t read a book or watch TV or do anything fun, because I had to study. But I wouldn’t. I’d just lie there and do nothing. And the stress and bad feeling would mount as procrastination did. That’s a classic symptom of depression as well.
And then came my three year mandatory military service. I did not enjoy it, but that’s not the point here. Even if I did not suffer from anxiety beforehand, I definitely did during and afterwards. It’s rough, never being able to plan your next week, or even the week you are in, because you might get called to do another 26 hour shift, of not being appreciated for very hard work you do, and which you also get no monetary compensation for.
I started taking psychiatric medication at that point. Went to a psychiatrist. And also suffered from a severe bout of acute depression by the end of it.
On Being Depressed:
What does being “depressed” mean? Is not being happy, while also not being “sad” – because my emotional range up until my early 20s was quite narrow, depression? Or do you need to be actively unhappy? I don’t know. I don’t think anyone knows. I don’t think there’s a single answer. And that’s why I can only say I’ve suffered from depression for at least twelve or so years. It’s possible it’s gone on far longer, but, perhaps not.
I don’t know when the starting point of my depression is. As to its causes, what they are don’t really matter. What I know is what I live with now. How I live now.
The questions of emotional self-definition and the “goal of happiness” set out by society, they actually matter, though. It is often said that people are pattern-recognizing machines. I’ve gone over this topic on another blog before, but I believe that we are pattern-creating machines. We look back and construct the story of our lives, and shape what is there to fit, and omit from our minds the ones that don’t add up. And we keep doing it, so the story shifts as we live it.
Moreover, I believe that emotional declarations, such as “I am happy” or “I am sad” (which often happen internally, within our minds), are performative, which is to say, they are true by dint of being said (such as “I judge you to be guilty” by a judge being an act done by way of a performative statement). Most of us not only don’t lie when we make these statements, but we cannot be wrong when we make them – they are true because we think them. We say them, we look at them, and then we ascribe truth to them, which then reflects on how we feel, and how we perceive the world.
It’s quite possible that moments of joy or periods contentment I’ve felt would’ve been described by others as “happiness.” But I don’t define them as being so, and that matters. That also matters to when you talk to other people – we all use the same words, but some of them, we can’t really point to something in the world and say “This is it, this is what it means,” so you have to respect that people feel the way they say they do, because they do, if only because they think so.
Most of us go through several relationships. And there’s the “I never loved this much before,” that you often hear. It may be true. It may not have been true had the person been able to truly compare how they feel now to how they felt before. But we can’t. And we revisit our life-stories as we live them. And it serves to keep in mind, for all things.
My Lived-in Experience:
And that is why I won’t tell you how long I’ve been depressed for. I don’t know. But some sort of emotional cloud had hung over my life for most of it. How does said cloud affect me? Boy, are there so many ways. I am a graduate student, and the inability to actually sit down and hand in assignments had cost me years of my life, quite literally. My memory of recent years isn’t as good of prior years, because depression also harms your memory. Increased insulin resistance, as diabetes and related issues are both a cause for depression and created by it. Man, such symbiotic cycles sure are something, right?
I sleep 12-16 hours a day right now. A part of it is due to the medication I take, which I’ll get to as well. But even without it, the tendency to curl in bed and avoid the world is not just a cliche when you’re depressed, but reality. The Spoon Theory by Christine Miserandino is a highly recommended read for all people. I make plans, and I have to accept that they may very well fall through, whether they are plans to meet with friends for a board-game evening, because I won’t feel like leaving the house or meeting anyone, or whether they’re plans to write a post such as this one and others, because I’m going to run out of energy and have to take multiple 2-3 hour naps during the day.
I used to like arguing with people for fun. Not just having discussions, which are more about trying to take in what the other has to say, but arguments, where you try to convince the other, to make good arguments. As I got older, I’ve run out of patience for these. It might be that it was mostly just growing older and understanding the futility of it, and that most people interested in this sort of behaviour (but not all, it’s really fun to have good-willed arguments with some people) are not worth my time. But it is also an understanding that I don’t have enough spoons for this sort of thing. Neither physical, in terms of how much time and energy I have during the day, or emotional.
Because these aforementioned people try to suck out your mental and emotional spoons by their behaviour. Which is quite unfortunate, as I project a personality and mode of communication that attracts them to me. A lot.
I can’t just read everything. If I read a story about depression, it can make me feel bad. Back when I watched Welcome to the NHK, I sympathized so strongly with it that I lost a month to a more severe bout of depression. I don’t read others’ accounts of depression for the most part, because it makes me depressed.
It affects every day of mine, and most activities. I’m currently feeling the best I have in the last 25 years, but up to three months ago, when my mood started improving dramatically, while the train I was waiting for arrived I had to turn my face away from it as it pulled into the platform, as I kept having the urge to leap in front of it. The thought “I should just kill myself” would pop into my head almost daily, without any particular reason.
I have to work less days, because it takes a serious emotional toll on me (I’m an extroverted introvert, but still an introvert), and I can’t take the physical effort of going to work as much as I need to, because, well, I can’t sleep 12-16 hours a day when I work, you know?
Skipping family weddings, skipping meeting with friends, losing days or even months at a time. That is life with chronic illness, or at least my life with chronic depression. Am I depressed? I am. I didn’t try to convince anyone, and even explored why you shouldn’t, but in case you were wont to try and convince me that maybe I’m not, or it’ll “just pass,” I hope by this stage you’ve been disabused of this notion. As I have been.
On Managing My Illness:
So what do you do with a chronic illness in general, and chronic depression in particular? A disease that isn’t curable? The first thing to do is to accept it. Accepting it does not mean welcoming it, or being happy that it is there, but realizing that if you only have so many spoons, you better not waste them on something as futile as wishing the moon were made of cheese. You’ll get nowhere, except spoonless.
So you accept that this is the way things are. And it is important. Oh so important. One of the most important lessons I can teach anyone, and moreover people who suffer from chronic illnesses, and even more so to people who suffer from chronic mental illnesses, is that you have to learn when to let go. You have to learn to forgive yourself for what you don’t get to. You won’t get to everything. Things come up, energy runs out. And if you keep treating what you did not get to as an open loop that makes it harder for you to do anything the next day, then you’re just paying spoons as interest, rather than using them to eat into your next day’s stack of activities.
And it is hard. Because the guilt on what you’ve left undone is there. I have 50 open tabs in my browser. About 20 of them are things I told myself and others I’d get to, and give them critique on. But it is not a promise to them that is the point here, but the one I’ve made to myself. Managing my depression is accepting the fact I did not get to them yesterday, or the day before, or on any day for the past month, or even more, for a few of them. It is accepting that I just might get to them tomorrow. And whichever day I get to them, it’s fine.
Another aspect of this is the degradation of will. Your willpower is actually a resource you can run out of, even if temporarily. How do you run out of willpower, aside from it just running out, especially as part of your illness? Well, you set yourself goals which you don’t accomplish. So it really is important to identify days where you realize you’re not going to get anything done, and accept that, and forgive yourself for it, and do what you can. Even if that is nothing.
Doing nothing is an important part of managing a spoonless day. Not just randomly doing nothing, but actively deciding to get nothing done, and learning to feel good about it. Well, not happy, but good.
And then there’s medication. Medication for mental illnesses is a touchy and controversial topic in many societies. Going to a psychologist or a psychoanalyst? Everyone does that. It only means you want to learn to know yourself better or perhaps your relationship with your parents still weighs on you. But medication? As numbers show, there’s been a massive boom in how many people take psychiatric medication, but it still carries a stigma.
Let me tell you bluntly: I wouldn’t be here today without medication. I wouldn’t be alive.
But like most chronic illnesses, my medication isn’t a cure. It is there to make the symptoms less. It is there to make them bearable. It is there to make them manageable. What the medication does is allow me to breathe, and during times when things are worse, it gives me the time I need for the worst to blow over, till it’s back to the oh-so-comfortable zone I’m used to being in, that I can take, with the standard “I wish I died” intrusive thoughts and the itch in my feet to leap in front of moving trains.
I’d like to discuss non-chronic depression for a moment here. I know many people who suffer from depression of all sorts. Because of my experience with depression, and because in most online communities I’ve been a member of over the past decade I’m older than most people, I’ve spoken with a lot of young people who suffer from depression of various sorts. I talk to them, and try to help them.
When you suffer from acute depression, medication is still not a cure. But it is possible things will pass over on their own, provided you have enough time in which you don’t die, time in which you don’t feel as if you want to die right now. Medication buys you that time. It buys you time to go and get some counseling.
Counseling hasn’t helped me, but I know many it does help. Acute non-chronic depression can be “cured”, or rather, survived, until you pass over to the other side.
No, medication doesn’t work for everyone. And no, not everyone even needs it. But if you feel like you should, and if you feel that you can’t take it anymore, then certainly don’t rule it out.
On Getting Better? On Other People:
Speaking of counseling and my own experience, things are not always the same. Things can get better. They can get better with time, on their own, or they can get better as you learn to manage the disease better. Perhaps there are causes for your chronic depression that you can somehow resolve, and in doing so, perhaps you won’t be “cured,” but you’ll do better.
I’ve been content for long periods of my adult life. Years even. Contentment has been my main goal in life with depression, not happiness, which I’ve given up on. And then, a few months back, I’ve met a girl. I hadn’t felt this intensely about anyone in many years, not even in the last long-term relationship I’ve been in.
I’ve even felt happiness, for the first time in many years. And yet, I am not cured. I still have to deal with the urge to go to sleep and not face the world, and with my limited amount of spoons, and with days when I do hit rock bottom again. But I have more spoons. I have more good days where I get things done. I go up and down daily during some of the bad weeks instead of losing a week that then becomes a month.
And yet, should things go sour, it is possible that a decade from now I’ll say I’ve not been happy for 35 years, not 25. But I’m going to try and not let that happen.
The girl told me, very truthfully, that she can’t be responsible for my happiness. And she isn’t. As part of all those talks I’ve had with others suffering from depression I’ve tried giving moral and emotional support to, I’ve come to this realization myself – just as these things often don’t have a cause, or a cure, they are also not something another can take ownership of. Sometimes I’ve had to tell people, after having the same talk several days in a row, that I can’t do more for them, though not in those words, that I’ve given them my opinion on a certain issue that was troubling them, and that they had to make the decision on their own. Or that I have to take a break, or that….
And it is heartbreaking. Because I’ve been in the same spot they are in. I know that you know it won’t help you, and that it is not endearing you to your friends, but you keep reaching out, and keep trying to lean on people, and you keep screaming into the non-void until it becomes the void you tell yourself you deserve, because you can’t do anything else. And forgiving yourself for that, while trying to manage the gaping hole, is a big part of being in the throes of depression, which most of us manage only after the worst of it passes over. Not ironic, just sad.
And it is hard to be relied on. It is hard to deal with someone who, no matter what you try to do for them, is still hurting, still clutching you as if for dear life. It is hard to be there for someone knowing they might feel better in the short term, but never truly better. Believe me, I’ve been on both sides of the divide.
And that, just like with dementia, is one of the hardest things of dealing with depression, and other mental illnesses, the fear of losing the self, even when you’re not the person who is suffering. The fear of losing your friends, on either sides.
The only thing scarier than that is the fear of being relied on, especially when you can’t help.
But as I tried to impress upon you earlier. Counseling can help. Medication can help. Friends and love can help. But in the end of the day, it is your life. Not only is it your own responsibility, but you’re the only one who can truly do anything about it.
Others can make it worse, but only you can make it better. Part of loving yourself is realizing that if a talk with someone helped you, that while you should be grateful to them (truly. It is not “nothing” which they do for you), for being a wall to lean on, or someone who threw a rope for you to climb up on, it is still you, and only you, that can do the work, that would result in you feeling better.
Maybe not happy. Maybe never good, but hopefully, good enough.
And after all of these words, covering all of these related topics, I hope you know more of my experience living with a chronic illness, and what some others might be going through.
As for me? I am fighting for this newfound happiness, and hoping, at long last, for more than just being content, even if I’ve accepted depression will always be some part of my life.
“As God himself claims, (so goes the story), “Vengeance is mine; I will repay, saith the Lord.” According to this philosophy, you do not simply belong to yourself. You’re not simply your own possession to torture and mistreat. – “12 Rules for Life: An Antidote to Chaos – Jordan B. Peterson.
In the times it’s hard to forgive yourself, leave it to God.
“Happiness is nothing”
“We focus on the idea of happiness too much. And the problem with that is, is that it takes our focus away from aims that would be more productive. It’s much better to aim for meaning than for happiness”- Jordan B. Peterson.
TLDR: Try reading 12 Rules for Life: An Antidote to Chaos – Jordan B. Peterson if you hadn’t already. Of course there’s nothing that will help you immediately especially some “self-improvement” book, but it may be the first step, who knows?
As for me I can relate to this. When I turned 10 I noticed myself being extremely shy (that’s about time, I think, my depression started) which grew into agoraphobia (or perhaps severe anxiety). Leaving the house was painful. Add to that constant back issues and you got a complete self-resentment, self-hatred. There was a time when I thought of suicide everyday, not commiting but just a routine thought like “I wish I were dead”.
Now I’m in my early 20-ies, still have and will have back issues, I can manage my anxiety and I’m too tired to even be depressed. Ability to forgive yourself and accept things like health problems played a huge part in becoming less anxious and depressed. As well as accepting the fact that you going to die anyway, so there’s no reason to worry or to end it all ahead of time.
Idk why I wrote this sheet. Perhaps as a reminder that everyone has(lives) his/her own hell. “Life is suffering”.
[…] Awareness Week, at least in the USA. I know many people who suffer from mental health issues, and my last post was on the topic as well. There should be an update post coming from me soon. I know most of you […]
Thank you for sharing I want to show this to my friends so they can understand my experience better. Super props for being so well articulated with English being your second language. I could tell from your Oregairu reviews that I felt like I resonated with your thought process.
Thank you. Some people around me have depression, anxiety and related issues, and I´ll benefit from knowing all this. I´ll pray for you, from time to time. Also, your thoughts on Full Metal Panic, Concrete Revolutio and patterns were quite fascinating. I´ll probably watch FMP at some time, CR may influence the next roleplaying campaign I´m playing, and I think I may write something about humans, patterns and Gene Wolfe’s short story “Forlesen”. These have been a very enriching two hours. So, thank you.